6Eggs: Rexulti - severe neuological/functional PWS. Anyone else experience this?

August 18, 2022

Hi All,

Just a bit of a history. 2013 I got suddenly chronically fatigued and sudden unexplained sexual dysfunction which then worsened into depression. Looking back it was probably severe overworking of my job at the time.

Over the next few years I was triated on a number of different drugs, SSRIs, SNRIs, noval ADs that were a new class (can't recall which one) anti seizure drugs etc and later on a few antipsychotics.

For the most part I had severe side effects from SSRI/SNRIs but everything else did nothing, like taking a sugar pill. I quite all these cold turkey after months of use for each and had no issues.

Sexual dysfunction for my main complaint even though the fatigue and flat affect were disabling but the later I cared little about at the time.

Out of my own research I found Mocloemide by 2016 and started that and saw about 50% improvement in depression and gained some energy. My sexual dysfunction improved slowly to an acceptable level that caused me no issues.

But due to struggling with motivation and work attendance due to the fatigue I lost my job. The psych prescribed me Rexulti and like magic it worked I was near 100% me again. This was late 2018/early 2019. My sexual function improved further. I had normal function although still not the libido prior the depression but normal compared to the general population as I was hypersexual before depression anyway so not an issue. 18 month later I started having SD again out of the blue and also weird sleep issues like jerky sleep/wake transitions and bad sleep paralysis. It took another 12 months to pinpoint the Rexulti as the cause as my docs weren't versed on this pretty new drug and my psych denied Rexulti as causing SD which I asked about before even taking it as SD was my main concern.

So about August 2021 I started tapering and did so over 8 weeks as per the usual info that I could find on google and assumptions based on the psych saying to cut to 50% dose in one go to see if SD might improve.

I had the usual withdrawals, all psychological ones but nothing that google didn't already suggest. I never really had withdrawals before so unusual for me. I had some burning pain in my genital area as well but had that once or twice with SSRIs as a side effect.

The withdrawals went away after a few weeks. About 9 weeks later the genital burning suddenly came back and within a week or two I got burning and then numbness there and also my lower legs.

Then I got soft glans syndrome and completely numb glans and semi numb genitals and saddle area. Few weeks later same burning and numbness happened to my face and hands. Then esophagus and tongue and I was having issues with swallowing, then breathing. I could not go to the toilet properly, 1s and 2s due to retention.

Few more weeks, then arm/leg weakness and incoordination. Uncontrolled sweating at the lower lumbar that gave a bad rash and infection. There was muscle jerks that persisted for weeks, feeling of face and tongue paralysis even though I could move. I had some paranoid thoughts about my thoughts in a cyclic fashions and couldn't hear sounds correctly. (eg dog snoring sounded like a kid saying "muma" then changing to a chainsaw outside even though the dog was on the bed)

I have had 100s of physical neurological symptoms, too many to list. I have been in hospital 5 times this year due to physical symptoms mimicking other serious conditions like, Spinal injury, GBS/CIDP, heart attack, seizure, stoke etc

Due to being so upset and anxiety ridden 3 months post withdrawal I had to reinstate and retapper but chose to tapper from 0.25mg not to go back to square 1 just so I could mentally deal with the debilitating physical symptoms. I couldn't work for months. The reinstating did nothing for the symptoms so what ever was triggered by the withdrawal could not be reversed.

During the last 7-8ish months of retapering at 50% reduction each 3 months corresponding to a bit over 10% biological reduction each step I have seen some things improve and some things worsen and many things comes in waves and many new symptoms on the way like tinnius, non sweating hands and feet, visual hallucinations, blindness, narcoleptic like attacks triggered by youtube+ headphone and driving.

I am currently at 0.0625mg or 1/32 of the normal dose (2mg which is what I was on) for depression or 1/64 of the schizophrenia dosage. I plan to go to 0.03mg in about 10-12 weeks and then stop 12 week after that.

I have also reduced my moclobemine from 300, to 150 and last week to 75mg, although I feel it hasn't got much of an impact unlike the Rexulti reductions which are hell for about 4-6 weeks post reduction, so it's like continuously going through the same cessation over and over while being on it has done nothing to reverse symptoms as mentioned.

I am still having bad SD which comes in waves but different combo of symptoms each time. The symtopms are pretty much exactly like PSSD but without anorgasmia or ejaculation issues, quite the opposite in fact. Orgasms are too intense with recently PE being a new symptom I had not had before.

I had been diagnosed with FND but I feel this isn't completely correct as this is clearly caused by the Rexulti. Has anyone else had extremely severe neurological symtoms from Rexulti and recovered? If so how long until the recovery? For me this has persisted for almost a year and only partial improvement and I fear it might me permanent like some PSSD sufferers.

I have been googling since November last year and still have not come across any cases of this. I seem to be the only one. One other person I talked to only complained of ED and PE that has persisted for years but they got it instantly taking it and only had the mental withdrawals, no neurological ones.

Love to hear anyone else had this from Rexulti or other antipsychotics.

Cheers!

August 25, 2022

Hey there 6Eggs,

Sounds like quite the ordeal to date. With quite the number of different drugs tried and stopped as well.

Thank you so much for getting your signature done for us as well.

I just want to get you started, give you some general information, and hopefully get you to slow your tapers down a bit.

On 8/17/2022 at 11:28 PM, 6Eggs said:

I am currently at 0.0625mg or 1/32 of the normal dose (2mg which is what I was on) for depression or 1/64 of the schizophrenia dosage. I plan to go to 0.03mg in about 10-12 weeks and then stop 12 week after that.

I have also reduced my moclobemine from 300, to 150 and last week to 75mg, although I feel it hasn't got much of an impact unlike the Rexulti reductions which are hell for about 4-6 weeks post reduction, so it's like continuously going through the same cessation over and over while being on it has done nothing to reverse symptoms as mentioned.

I don't think you should keep doing 50% reductions! I guess we don't even use moclobemide here in the U.S., although I did find some information about it......we don't have a tapering topic on it. Rexulti does get used here in the US, but as yet we don't have a topic on that either.

Have you just been slicing pills to do all your reductions to date?

I'm just going to give you some of the really basics here today.

The 10% taper recommendation is a harm reduction approach to going off psychiatric drugs. And likely the best method to take when tapering off psychoactives.

*Why taper by 10% of my dosage

Taking multiple psych drugs? Which drug to taper first?

What is withdrawal syndrome.

Brain Remodelling

Dr.Glenmullen’s withdrawal symptom list.

The Windows and Waves Pattern of Stabilization

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. The CNS likes stability. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system.

Magnesium, nature's calcium channel blocker

Omega-3 fatty acids (fish oil)

And I'm so sorry 6Eggs, as we don't have tapering topics written up specific to moclobemide or rexulti yet.

I'll just leave a couple links to some information on those drugs here now, for all of our usage. I know you've done some reading on your drugs. And then often we do need to search further, to find ways to help get doses that are outside of those prescribed, with more accuracy than just cutting pills too.

moclobemide

Rexulti-Drugs.com

Welcome again 6Eggs. This will be your Introduction page and the best spot for you to ask questions around your taper, keep a bit of a journal going, and communicate with us all.

Love, peace, healing, and growth,

manymoretodays(mmt)

Edited August 25, 2022 by manymoretodays

August 25, 2022

Thanks for the reply. I have been following the halving rule of thumb every 3-4 months. It's very close to the research from Horowitz who has had good success with the reductions for antipsychotics of 10% receptor occupancy every 3-6 months which is a little less than 50% reduction when looking at dosage for most antipsychotics.

Each drug has a slightly different hyperbolic curve and from the limited data on Rexulti I found the halving rule my doctor suggested to be slightly more than 10% receptor occupancy per reduction.

I have some withdrawals with each reduction but they settle after about 4 weeks. Despite the continuous reduction I still have had great improvement. I am now functional in life and working my contracted permanent part time job hours, where as early this year I was in and out of hospital and was not working and bed ridden about 50% of the time.

Reinstatement did not fix the symptoms, they got better with time even with this relatively fast reduction. It's more that the symptoms from the first cessation has lingered. I reinstated 4 months after my last dose which might explain why it did nothing for physical symptoms, only added the original side effects back on top of my withdrawal. However it did solve the extreme mental distress and anxiety. I plan to continue like this with the Rexulti as it is working even if it's unpleasant at time.

Since my first post I have read that these neuopathy type symptoms are not uncommon from withdrawal so I know I am not the only one.

As for the moclobemide, I have gone from 300 to 150 many months ago and experienced instant improvement and I decided to do another halving again recently, but this time it was absolutely awful! So I am going to use the 10% per month method as it seems I have hit some sort of threshold where reduction give bad withdrawals. The good news is those moclobemide withdrawals seemed to have settled after 2 weeks and I feel really good on my good days, bad days not great but bearable now.

The moclobemide reduction has triggered a sudden recovery (although still inconsistent/in waves) of my soft glans. Yay finally! I have now a minimal glans firmness and blood flow and colour/texture like I did pre drugs/withdrawal and also the sequence of erection is normal again since this all happened. For me, the glans starts to erect first and quickly followed by the shaft and they both reach erect state at the same time. During this whole time since November 2021 my shaft would erect first and the glans would either stay soft or erect much later with a lot of input. It's still not great, but sometimes it is and it's a massive step forward so the moclobemide will now also be tapered going forward but much more slowly as I react to it badly.

Is there a recommend dose from when I can stop the Rexulti? I planned 0.03125 (1/64th) but after reading some of the posts on here I might go one more at 0.0156.

Receptor occupancy should be well below 5% by then. I have my pills compounded as the Rexulti full dose pills are tiny, 3mm? diameter.

For the moclobemide I have access to a rifle powder scale which can do mg with high accuracy and the moclobemide tablets are quite large and I will sand them down with fine wet-dry paper.

My PE seems to be a bit better, not so on/off and a bit more control, but other times is fine and I can orgasm at will when ever I like. I'd say it's 50/50 if I get PE or not when having sex, so in waves like my other symptoms. The PE is pretty new but I did have it last year when I got down to low doses of Rexulti and it resolved completely after about 10 weeks or so being Rexulti free so I think it's a side effect rather than withdrawals, same thing with my libido and erections, they got worse the longer I stayed on the drug while re-tapering. Same low libido, ED and arousal disorder as last time. The main reason I tried to stop it.

August 27, 2022

Hi again 6Eggs,

Could you get some of your doses of both drugs in your signature too?

I am seeing some in your narrative responses, but getting those in your signature will help make things clearer to anyone stopping by.

Keep the dates for sure, and then add in dates of drug changes, and doses too.

AccountSettings/signature should take you right to your signature, where you can update/edit whenever needed. Just be sure and hit SAVE when done.

On 8/25/2022 at 2:34 AM, 6Eggs said:

I have some withdrawals with each reduction but they settle after about 4 weeks. Despite the continuous reduction I still have had great improvement. I am now functional in life and working my contracted permanent part time job hours, where as early this year I was in and out of hospital and was not working and bed ridden about 50% of the time.

And this is great news ^ Yay......happy dance, woop de doo.

On 8/25/2022 at 2:34 AM, 6Eggs said:

Thanks for the reply. I have been following the halving rule of thumb every 3-4 months. It's very close to the research from Horowitz who has had good success with the reductions for antipsychotics of 10% receptor occupancy every 3-6 months which is a little less than 50% reduction when looking at dosage for most antipsychotics.

Was it this research proposal paper? Horowitz, 2021: A Method for Tapering Antipsychotic Treatment That May Mimimize the Risk of Relapse

Good stuff, huh?

So you are doing a 50% reduction and then wait 5 months?

And as yet no lasting jolts of WD symptoms? You did describe some of what you felt in your above post too, thanks.

Even Horowitz does note that we are all different and should most definitely pay attention to our own variations too. Some do choose to do just 10% or less on a 4 week schedule. And I have to wonder if and when getting lower and lower in dose.......whether you too might benefit from reductions of just 10%(or less) every 4 weeks. Yes the receptor occupancy thing is definitely a huge part of what goes into safe tapering. There must be more though too, in that way of individual variation.

On 8/25/2022 at 2:34 AM, 6Eggs said:

Is there a recommend dose from when I can stop the Rexulti? I planned 0.03125 (1/64th) but after reading some of the posts on here I might go one more at 0.0156.

Receptor occupancy should be well below 5% by then. I have my pills compounded as the Rexulti full dose pills are tiny, 3mm? diameter.

For the moclobemide I have access to a rifle powder scale which can do mg with high accuracy and the moclobemide tablets are quite large and I will sand them down with fine wet-dry paper.

I know in that Horowitz paper the end dose is set around 1/40 of the starting dose.
And I think you'll like this whole nugget too: Managing the Endgame Taper

I think it might be best to work your way off the Rexulti first, and then some time after that resume the moclobemide taper. And likely you are doing that? Sounded like you might have shifted into just Rexulti tapering now.

And I am thankful too, for your recoveries to date.

I do recall another member struggling with FND.......not specific to Rexulti though. I think at that time, we referred her out to find FND specific resources, FB or otherwise. Why do I suspect so many have gotten that as a consequence of psych drugs??????........ah, well.......I've been around this world to long I expect. I wonder if there are those given that FND diagnose, that have NOT been on other drugs. It's an ugh ly situation.

Okay, keep on coming back. Keep us updated!

Love, peace, healing, and growth,

mmt

August 28, 2022

Horowitz does NOT advise a 50% reduction at every step:

Quote

This suggests that many patients may tolerate dose reductions of 25%–50% of the most recent dose (corresponding approximately to 5–10 percentage point decrements of D2 occupancy) every 3–6 months. Smaller reductions (such as 10% of the most recent dose) made every month may be more tolerable in the aim of produ- cing more “evenly spread” perturbation to the equilibrium.

On 8/17/2022 at 10:28 PM, 6Eggs said:

the Rexulti reductions which are hell for about 4-6 weeks post reduction

The intensity and duration of your withdrawal symptoms indicates whatever method you're using, your reductions are TOO LARGE for your nervous system to accommodate. These warning signs indicate that if you continue this way, you might suffer progressively more serious problems.

Much smaller reductions might be made more often than every 3-4 months with better results. As you know, we recommend 10% exponential reductions -- mentioned by Horowitz above -- which approximate the hyperbolic taper.

August 29, 2022

6 hours ago, Altostrata said:

Horowitz does NOT advise a 50% reduction at every step:

The intensity and duration of your withdrawal symptoms indicates whatever method you're using, your reductions are TOO LARGE for your nervous system to accommodate. These warning signs indicate that if you continue this way, you might suffer progressively more serious problems.

Much smaller reductions might be made more often than every 3-4 months with better results. As you know, we recommend 10% exponential reductions -- mentioned by Horowitz above -- which approximate the hyperbolic taper.

Yes the symptoms suck but they are getting progressively getting better and shorter waves with each reduction and at the 8-12 week mark I am always significantly better than the previous stable period. 10% reduction with any sort of accuracy is not possible at this microscopic amount as the tolerance in compounding is proportionally getting bigger verses the actual dose and I can feel this with each batch or 30 pills I have compounded which show up as either original side effects or WD when I start a new batch of the same dose. After all we are talking only few 10s of micro grams now that have to be evenly dispersed into a filler by grinding from already tiny pills and each compounded pill varies at a guess 5-10% in itself as not all of them are completely filled (transparent capsules).

I don't know if you missed the bit in my previous post, 7-8 months ago I was basically disabled and could not work, barely could drive and often bed ridden. I am 90-95% fully functional and working normal again and can see light at the end of the tunnel. This method is working at least for the Rexulti.

I agree that 50% is way too fast for the Moclobemide though, at least now it is, was fine the first couple of reductions. I am going to experiment with 10-15% per 4 weeks or so but not until several weeks becasue the last recent reduction of 50% was a bad one but luckily not too long lived, but the end results were fantastic and very encouraging so I know that it's key to half my problems due to some complex interaction with the Rexulti.

August 29, 2022

On 8/28/2022 at 7:54 AM, manymoretodays said:

Hi again 6Eggs,

Could you get some of your doses of both drugs in your signature too?

I am seeing some in your narrative responses, but getting those in your signature will help make things clearer to anyone stopping by.

Keep the dates for sure, and then add in dates of drug changes, and doses too.

AccountSettings/signature should take you right to your signature, where you can update/edit whenever needed. Just be sure and hit SAVE when done.

And this is great news ^ Yay......happy dance, woop de doo.

Was it this research proposal paper? Horowitz, 2021: A Method for Tapering Antipsychotic Treatment That May Mimimize the Risk of Relapse

Good stuff, huh?

So you are doing a 50% reduction and then wait 5 months?

And as yet no lasting jolts of WD symptoms? You did describe some of what you felt in your above post too, thanks.

Even Horowitz does note that we are all different and should most definitely pay attention to our own variations too. Some do choose to do just 10% or less on a 4 week schedule. And I have to wonder if and when getting lower and lower in dose.......whether you too might benefit from reductions of just 10%(or less) every 4 weeks. Yes the receptor occupancy thing is definitely a huge part of what goes into safe tapering. There must be more though too, in that way of individual variation.

I know in that Horowitz paper the end dose is set around 1/40 of the starting dose.
And I think you'll like this whole nugget too: Managing the Endgame Taper

I think it might be best to work your way off the Rexulti first, and then some time after that resume the moclobemide taper. And likely you are doing that? Sounded like you might have shifted into just Rexulti tapering now.

And I am thankful too, for your recoveries to date.

I do recall another member struggling with FND.......not specific to Rexulti though. I think at that time, we referred her out to find FND specific resources, FB or otherwise. Why do I suspect so many have gotten that as a consequence of psych drugs??????........ah, well.......I've been around this world to long I expect. I wonder if there are those given that FND diagnose, that have NOT been on other drugs. It's an ugh ly situation.

Okay, keep on coming back. Keep us updated!

Love, peace, healing, and growth,

mmt

I will try somehow edit my sig to include this but I have already used up the 12 lines on what I have already.

I am doing 50% each 3 months as 4 or more months is too long and the drug side effects creep back in I found and the WD symptoms are more bearable that the tardive side effects. The reductions always stop the original side effects for about 3 months. Both the WB and original side effects are getting better at these very low doses.

My aim has always been 1/64th as my best efforts for extrapolating the receptor occupancy on this drug (due to limited data) at these low doses suggests receptor occupancy is higher than 10% at 1/40th. My calc suggests somewhere between 15-18% at the current 1/32nd dose. I would like to get to about 5% before stopping so 1/64th is close but now considering 1/128th, what is an extra 3-4 months anyway after having to deal years of this crap?

As for the Moclobemide, I am pausing that for at least 8 weeks or more post last reduction to allow it to settle (which is mostly has already) and will try the 10% and maybe 15% and see how I go. So I will be tapering both at the same time but the Moclobemide much more slowly and offset behind the Rexulti. After having sudden improvement from the Rexulti specific WD after cutting the Moclobemide I know the key is to reduce both together as there seems to be some complex interaction where the Moc is inhibiting recovery of the Rexulti WD.

On my good days I feel almost like myself, a self I didn't know existed or at least can't remember due to how long I have dealt with psych drugs and previous mental illness. Even my sexual dysfunction is lifting. I complained of PE the last several weeks and yesterday and last night I had no issues with PE, physical function down there was pretty good and my partner and I had sex 3 times yesterday and it was awesome! The most I have done in a day in quite a few months.

With FND there is a growing amount of researchers etc... questioning the whole idiopathic FND and seeing the strong correlation between FND and past and/or current psych drug use. Even my neurologist believes these drug WD are my FND but still sticking with FND diagnosis as PWS and PAWS isn't officially recognized as a diagnoseable condition by the medical feild, which is should damn well be.

August 29, 2022

17 hours ago, 6Eggs said:

I will try somehow edit my sig to include this but I have already used up the 12 lines on what I have already.

6Eggs,

Try and just add the dates, and dose changes to the pre-existing lines on Moclobemide and Rexulti

You can leave out some of the symptoms and narratives there in the signature too.

You could bold both Rexulti and Moclobemide(just the names) too, and then keep all the pertinent date, drug, dose changes information together on each of those in one to two lines.

I'll copy your present signature here:

Late 2014-Early 2015 started Lovan SSRI for fatigue and severe SD. Severe side effects. CT

2015- multiple SSRIs and SNRI (type?) Anger and side effects. CT

2015- Agromelatine 6 months- No effects CT

2016- Present Moclobemide. Partial response without side effects.

2017- 2017- Added Sodium Valproate- No effects just hair loss. CT

2018- Antipsychotic. (type?) No effects. CT.

2018- Latuda Antipsychotic. 6 months. No effects. CT.

2019 Jan- Rexulti. Massive improvement no side effects. 2mg dose.

September 2020- Sudden severe SD after a number of years of being fine and jerky sleep/wake transitions + severe sleep paralysis, injuries to face during sleep.

August 2021- Rexulti concluded as cause. Begin taper over 8 weeks. Delayed severe neurological WD symptoms in late November 2021 after being symptom free.

Reinstated and taper Rexulti @ 0.25mg Jan 2022, 0.125mg May, August 0.0625mg (current dose).

Taper Moclobemide March 2022 from 300mg to 150mg, August 75mg (last reduction too harsh, moving to 10-15% per 4 weeks going forward). Big improvements, can see the light at the end of the tunnel

Did you say you have a scale already? That may be very helpful with your Rexulti now, and keeping further reductions to much less than 50%.

You've seen improvement all around, and maybe......just maybe........staying on a bit now, and more slowly tapering might help reduce the chance of of any of the supersensitivity reactions. Which could occur now, or even a year or 3 out. If you've never experienced psychosis....in terms of hearing things, seeing things, or even a change in thought organization..........that's great, but with what you are doing you might be setting yourself up for some of that.

Anyway. I'm not seeing Rexulti as water soluble at all and so a scale, if already using, might continue to be your best option. Many do more of suspension even with poorly soluble substances we see here. I did my last drug oxcarbazepine in water, even though I didn't know then, but it is poorly soluble in water. It made a nice milky suspension and it all worked out for me.

I'll leave you a list of links at the end, that you might begin to go through, in hopes they help with slowing things down AND perhaps even going for a long HOLD now, while planning ahead with the how to's

With your Moclobemide, I am finding it to be fairly water soluble, which is great.

From: https://go.drugbank.com/drugs/DB01171

Water Solubility

1.12 mg/mL

You can also scroll on down and see some of the CYP450 information on it that comes up. I think you had mentioned some of that somewhere above.

Usually when we do find conflicting CYP450 metabolisms between drugs, we first make sure they are not taken at the same time......and if they are, get them spaced out at least 2 hours from each other in hopes that will minimize metabolism conflicts.

And man.......it's difficult, complex.......really hard I think, to alternate tapers the way you are doing and get a grip on the then subsequent changes in the CYP450 metabolisms.......then further basing your taper plans around that. Just saying.

Anyway. I'd be thanking my lucky stars for current improvements and all. And if I were you........surely, I'd slow down. I'd slow the heck down. Why risk it? Oh my gosh. Why risk it with both drugs........ that some kind of cumulative rapid taper rebound is going to creep up and blow away all the progress, you've made to date.

As far as the Rexulti being responsible for significant adverse effects you've got it lowered now. You're doing better. Why push push push it? Or take the risks you are now taking?? Why, why?

And I've got to warn you of this sometimes "honeymoon effect" after massive tapers, and then sometimes even along the way. I just do. Be careful. Slow down.

I've reread Horowitz again......and yah, it's a proposal, a research endeavor, and nowhere do I see it suggested to do tapers like the ones you are doing. I wish I knew how to use that formula that is in there too.......it always leave me scratching my head.

Important topics in the Tapering forum

and while your specific psychoactive drugs are not in the lower list, in the top list you'll find information on using scales, on math, on making liquids to taper, measuring, etc.

Liver Enzymes Cytochrome P450 Interaction Tables

I'm sure I made my point. So, okay. Truly happy for your now.

Love, peace, healing, and growth,

mmt

Edited August 29, 2022 by manymoretodays
okay, links going where they should be.....yay!

August 30, 2022

Yeah I have had that super sensitive side effect earlier this year, hearing things and weird uncontrolled thoughts and feeling paranoid about those thoughts in a cyclic manner. That happened when I reinstated Rexulti actually, never happened while I was CT. But went away after a month or 2. Still occasionally get visual hallucinations but only when waking/falling asleep, fractal type stuff like those described by LSD users. Never had it while awake, neither was the auditory stuff. The weird thoughts were scary though but luckily it only lasted a few weeks after reinstating. At that point I hadn't even touched the Moclobemide.

My scales won't measure the rexulti doses, not sensitive enough to be accurate for the micro grams worth and the stuff in the capsules is a tiny amount of powder and can't be cut without spilling the contents.

I have to stick to compounding for that one.

When I get to my lowest dose I plan to hold and see if things improve or ?? This is like 7-8 months away at this point.

Moclobemide is easy to measure as the tablets are big like OTC pain meds, so I will be able to handle this myself until prob 15mg or so before compounding will be the better method. This drug I def will let it sit for a while and go slow on it as it's not so bad side effects wise.

Also I forgot to mention that the Rexulti has a super long half life of 91/96 hours for the main drug and metabolites so it takes about 4 weeks to effectively plateau out after a reduction, this is when I feel the symptoms, once it levels out my symptoms mostly lift and the next 8 weeks is the stable period before what feels like inverse tolerance creeping in (like mentioned, original tardive side effects).

So thinking about smaller more regular reduction like the 10%-4 week method might be more painful due to indefinite drug level drop off due to the long half life as I won't have periods of stability but then too long on one dose I get reverse tolerance which also sucks. So far the 12-13 week reductions have worked best and a balance between the 2 edges of the sword. Perhaps reducing by a smaller amount might help, I could try I suppose.

I am hoping once I get to the lower/lowest dose/s that these side effects go away or at least mild enough so I can hold for a while before finally stopping.

September 8, 2022

On 8/30/2022 at 1:01 AM, 6Eggs said:

Also I forgot to mention that the Rexulti has a super long half life of 91/96 hours for the main drug and metabolites so it takes about 4 weeks to effectively plateau out after a reduction, this is when I feel the symptoms, once it levels out my symptoms mostly lift and the next 8 weeks is the stable period before what feels like inverse tolerance creeping in (like mentioned, original tardive side effects).

Hi 6Eggs,

Woah, yes......longer than Abilify, which it does seem to have some similarities too. Important point is to NOT feel symptoms at that 4 week point......it would be so great for your and your nervous system to not get WD symptoms.

That's good then the supersensitivity was manageable. Most I experienced was more of a positive nature.....I'd hear people having conversations about psych drugs in a busy cafe. Hear people talking about me, but oddly it was usually ok stuff too. I'd see the back of someone and be sure they were a long lost friend or relation and then get closer and they were complete strangers. It was a weird thought phenomena thing. Anyway.......just glad it wasn't any of that persecutory stuff. And I was aware, enough to say to myself......well, I don't if that was real or not.......and don't stress it.

Anyway, any updates or information to share,

L, P, H, and G,

mmt

September 8, 2022

Luckily I didn't have any of those sorts of super sensitive type WD symptoms, more distorted internal self awareness kind of thoughts I guess and the auditory symptoms were distortions and not really hallucinations and they went away pretty quick but had very short bursts of those for a number of months. Like few min to secs bursts maybe once a month? I have not had them for a few months now.

I get what you mean about avoiding WB symptoms but they are already there regardless, they just temporally worsen for a few weeks before improving a few steps ahead of where I was at the last stable-ish period.

I am going to try hold 4 months for the Rexulti and see if this has any benefit. With the Moclobemide, the last 4 weeks were crap. First 2 weeks were horrible, week 3 was great and week 4 was crap again but different. Now feeling better the last 2 days. So I have to be much more careful with the Moclobemide going forward. I need to hold for a number of months and then go forward trying the 10% method. It might be possible the 4th week was actually the new batch of compounded Rexulti as it started the week I started the new batch and didn't feel like the first round of Moclobemide WB, it was more like the Rexulti ones, can't say for sure but I typically get a reaction with each batch, which I mentioned in a previous post that being such a low dose it's likely going to vary from batch to batch.

My PE is gone now which is great but my sexual function is still quite variable but at least not weeks and weeks of bad followed by a few days of good and then weeks of bad again.

It's much more consistent but seems to be a couple of days on and then couple of days off which is a lot better than the above and gives me some peace of mind it's getting better.

October 1, 2022

Bit of an update.

Seems things are settling down now, 9 week post reduction in Rexulti and some 7 weeks post Moclobemide.

Interestingly, the 2nd batch of compounded Rexulti made me feel worse physically than the first 4 weeks (1st batch) which followed the reduction by 50%. I suspected the 2nd batch was a lower drug amount than the first as the symptoms suddenly improved within a day or 2 of starting the 3rd batch. The 3rd batch also saw a reduction in libido and sexual function too, which is what happened when I increased the dose. But not a biggie, it's not too bad and still better than months prior just a step back from the 1st and 2nd batch.

While I was making my -10% next batch of Moclobemide to try once I know things are settled for sure I found that my 75mg doses which are the 150mg tablets snapped in half varied by some 15-20% daily which could explain why some days have lots of symptoms and others are ok. Moc has a very short half life and WD can be felt for me at least, 20 hours after a dose change or miss. This was true even before I ever tried to stop any of those 2 drugs and as long as I have taken them. I sanded down the next reduction with sand paper and I was able to get all of the doses within 1-2% of each other, far better than snapping them, so even with the reduction I am hoping to see improvements in stability.

This also prompted me to check the chemist's compounded doses and I found they generally vary 5-10% on average and some doses were as much at 25% less than most of the others. Not at all ideal but as such low amounts it would be hard to do any better.

I also discovered that even though I have had many batches compounded over the year, the last 3 or 4 all have the same expiry date which means they are using the same off the shelf packet to compound from. I suspect my monthly batches are made from a single tablet as 1 is more than a month's worth. All these variables, from the individual original tablets to the variation in my compounded capsules, there could be a significant amount of variation day to day and over the dosing period.

October 3, 2022

Hmmm.

I seem to remember brassmonkey pointing out that the weight difference between manufacturers was often of 50 mg or was it 5 mg, and to be expected. I'll @brassmonkey, so that when available they can take a look and weigh in on the subject.

As I'm not sure what to make of your % difference and how that might relate to mgpw(mg of pill weight) and if it is significant.

It does seem you felt a difference though.

So you are settling into WD normal now? And that is good I think.

Keep up the good work.

L, P, H, and G,

mmt

October 4, 2022

Thanks for posting that link, it's very interesting and seems exactly what I am experiencing. I have been pretty stable for a number of months now with gradual averaged improvement, certainly not bad enough to stop me getting on with life anymore.

I had a thought yesterday. It could be the batches I have made that caused me to feel worse last month and mostly fine this month, but I also know that I generally have a bad wave just before 8 weeks on a dose and once I cross the 8-9 week mark I suddenly improve and stay stable until the next reduction. It could well be that patterns as this would be 3 of 3 since reinstating. I have improved again since the last post and feeling pretty ok. Even sexual function is rebounding back to the substantial improvements I saw the first 4 weeks of this current dose so it's reassuring that I have not lost those improvements.

October 12, 2022

I am starting the -10% reduced dose of the Moclobemide tonight. I'll report back how it goes.

Also, a few general question? I am still having pinched nerve symptoms in my lower legs after working jobs at work where I am doing heaps of crouching up and down to get under machines and the symptoms persist for several days to a few weeks after resting or not crouching. This was one of 2 very first symptoms I got when withdrawing the first time last year that sent me on a wild goose chase as all the doctors and hospital thought spine or pelvis nerve injury/compression but was ruled out.

Is it possible that WD can involve extremely sensitivity to nerve compression? I get it in my arms too which I never had prior to WD. For example, if I stretch and happen to bend my arm/s in (close up my elbow) I get the same pinched nerve sensations in my forearms that linger hours after straitening out my arms. Same if I put pressure on my elbows when sitting in bed or the couch, the symptoms linger for ages instead of 10 sec or so like they should.

No matter how many times I experience this, I swear it's something physical in my legs and arms, but since it started the day the drug left my body last year I have to convince myself it's a WD symptom, but I just can't get my head around now it's physical like that.

Is there any cases of other people having nerve compression mimicry from WD?

Also, is there any hypothesis/theories to why serotonergic agents cause skin/tactile numbness either during use or WD? I have googled this a lot since last year but found little relevant info on the subject other than it's established that it's a thing.

November 20, 2022

Bit of an update.

Just about to finish my last 0.0625mg batch which was actually worse than the previous 2 batches. The compounding chemist discarded the bulk drug as it was expiring so they ordered a new lot for my last 0.0625mg batch and it felt like it went up a dose, the usual Rexulti side effects suddenly worsened as soon as I starting that batch.

So in about 5 days I start the 0.03125mg regime for the next 3-4 months. Almost there.

The Moclobemide 10% reductions have been tolerated very well and has seen a great stabilization and improvement of WD/SE symptoms. The self weighed and adjusted doses of 67.5 ish mg dose actually brought stability as I worked out my snapped in half 150mg tablets to 75mg were inconsistent by as much as 15-20% with 10% day to day variation being the norm. When I sanded and weighed each tablet for the 67.5 dose, I got them within 1-2% of the worst variations.

I am now currently down to 60.18mg and have some 2.5 ish weeks to go before starting on about 54mg which I have already prepared in advance.

With the Moc 10% reductions I have had the biggest improvement in stability, libido, glans erection is well on the way to full recovery, the glans sensation has pretty much recovered, mostly normal now with less fluctuations and even more improvement since the 60.18mg.

Face, lower legs and hands are still a bit funny sensation wise but comes and goes. Worst after taking the meds at night, usually good during the day. Still have visual noise, worsens with Moc reductions but improves before the next reduction is due.

Doing very well and the Moclobemide seems to be the drug that reducing it has had the biggest and most meaningful improvements. I am starting to speculate that Rexulti was blocking the serotonin receptors while the Moc was increasing serotonin availability and my CNS adapted to the condition of blockage with higher serotonin levels and when I tried to stop the Rexulti the receptors were perhaps completely overwhelmed from the above natural level abundance of serotonin.

November 30, 2022

Hello! How are you feeling these days? My family doctor asked me to CT rexulti 3 mg which I have been on for a year. I am scared reading your post saying rexulti stabilization takes a long time. Do you think I am safe now? Do you think I will get new withdrawal symptoms from rexulti? It is too late to reinstate, I am so scared.

December 1, 2022

Thank you 6Eggs for the detailed updates! Yes, I think sometimes we can only speculate. And glad your latest batch of rexulti seems sound. Best. L,p, h,and g. mmt.

December 1, 2022

22 hours ago, angela9985 said:

Hello! How are you feeling these days? My family doctor asked me to CT rexulti 3 mg which I have been on for a year. I am scared reading your post saying rexulti stabilization takes a long time. Do you think I am safe now? Do you think I will get new withdrawal symptoms from rexulti? It is too late to reinstate, I am so scared.

Hi Angela, Thanks for the conversation in the PMs. Would have been good to have some of that conversation here as it's apparent you are having quite a lot of the symptoms that I had/have but not really the sensory stuff as of yet. Keep us posted here as things change. I think you should stay on the 5mg of your AD until you know if anything improves or worsens before taking the next step. It can take a few months to really know. For me, it worsened so I had to reinstate and taper again, but you might be lucky having been on Rexulti only 12 months.

5 hours ago, manymoretodays said:

Thank you 6Eggs for the detailed updates! Yes, I think sometimes we can only speculate. And glad your latest batch of rexulti seems sound. Best. L,p, h,and g. mmt.

So far, so good. Week in to the 0.03125 (1/64th) and it's not bad at all. Was really fatigued for the first 4 days and loss of libido/ED but then got sick with some cold yesterday so perhaps that was from what ever virus I have incubating for those days, not sure really. RAT test for covid was negative and within 24 hours I have mostly recovered.

The Moclobemide reduction from 67ish mg to 60.18mg was also a brand change as the usual brand name was out of stock and it's apparent I had some side effects and troubles from that which included some libido loss etc... and bad moods that I could not explain, electric shock sensations when sleeping/waking, trouble sleeping and worsened buzzing sensation and skin numbness, worse tinnitus. I have read many complaints from users of Moclobemide that certain brands work better than others. So at my best judgment I think the brand change may have gone up the dose slightly? even though I cut them to be a reduction cross brand. So I got 2 packets worth so I have maybe 3-4 months worth of the same brand to work with and will ask to get the same one going forward. I got about 8 days before the 54ish mg dosage starts, if I see improvement again I know I am on the right track.

December 26, 2022

Hi All, an update.

Just finished the first month of the 0.03125mg (1/64) Rexulti and I didn't notice too many debilitating physical symptoms but did suffer general low mood and pretty bad SD and loss of libido for almost the whole first month.

I also started the 54 ish mg of the Moclobemide some 2 weeks ago and felt no real negative effects that I could pinpoint to that reduction so this confirms that the brand change likely went up a dose relative to the previous brand and explain why that made me feel so crap for that month.
Like a light switch about 5 days ago my mood suddenly improved and my libido came out of nowhere and SD nearly resolved. This is the best it's been in years in this aspect, it feels more or less right and normal now. The soft glans suddenly mostly resolved too, (maybe 80-90% normal?). So I know I should make a full recovery given how close the Rexulti is to being gone from my system. The reductions in Moclobemide continue to show improvement shorty after each reduction stabilizes and is very tolerable doing the 10-11% per month once I stuck to the same brand.

I think it's worth speeding up the Moclobemide taper a bit so the ratio from activation from the Moc to the blockage from the Rexulti are more balanced and come down together. I found that Rexulti going down faster than the Moc makes symptoms much worse compared to reducing them the same rate due to my hypothesized receptor over activation from the Moc.

The only issue is I can't do the Moc reductions in larger steps like the Rexulti due to the extremely short half life of Moc. So I did some basic maths and figured I could give the Moc reductions a go at 10-11% per 3 weeks and that way the activation/blockage ratios end up similar at the end of each 4 month Rexulti cycle and the Moc should be able to CT in 12 months or so from now so not at all too fast from start to finish (almost 2 years). The Rexulti will CT in 7 months from now.

Otherwise I feel like I am going on with life fine and progressing well.

December 29, 2022

On 12/25/2022 at 8:48 PM, 6Eggs said:

I think it's worth speeding up the Moclobemide taper a bit so the ratio from activation from the Moc to the blockage from the Rexulti are more balanced and come down together. I found that Rexulti going down faster than the Moc makes symptoms much worse compared to reducing them the same rate due to my hypothesized receptor over activation from the Moc.

Hi 6 Eggs,

Hmmm. I don't think it's worth speeding up the Moclobemide taper. I just don't.

You could wind up worse. I mean I have seen many a zealous taperer go too fast, and then it might be months or more than a year to get back the previous stability or WD stability.

It's just so hard to know, for sure if indeed it is CYP450 metabolism that is effected and subsequent changes in the blood level of one or the other of your drugs. I think it is. It's theoretical.

I'd go with keeping your whole taper plan more simple. It is now very complex sounding and variable from our basic harm reduction plans.

Ultimately I know it's up to you, and you are very bright. I would just hate to see you get into trouble with symptoms.......

Thanks for the update, and keep them coming

On 12/25/2022 at 8:48 PM, 6Eggs said:

Otherwise I feel like I am going on with life fine and progressing well.

Yay! This is wonderful ^. Makes my day brighter!

L, P, H, and G,

mmt

December 31, 2022

Well I have experimented with the Moclobemide long enough to know that it's more the amount of reduction that brings about WD symptoms and not so much the time span. It stabilizes very quickly, 1-2 weeks, I think this is mainly due to the extremely short half life and mechanism of action which the CNS/PNS can turn over enzymes within 2 weeks from what I read unlike SSRIs where the transporter can altered/broken for a long time in some people.

As far as I have experimented there seems to be no long term WD from Moclobemide (at least for me it doesn't), just the severity of the WD which is mainly due to reduction size as mentioned.

I seem to have way more negatives being on it than coming off. Yesterday I was unwell and I have put it down to handling the drug with exposed skin the day prior. I was very dizzy and brain fog all day and the night/day before I had restless leg syndrome in my right arm and hand
(the hand that was mostly expose from spending hours sanding and making up 3 batches worth of the tapering).

My fingers on both hands were numbs and tingling, right more so. This seems to happen almost every time I sand the tablets down and get dust on my fingers and hands. Obviously gloves would help if not the fact for sandpaper and sanding by hand. So it's a necessary evil as gloves instantly tear and get dust inside them which is worse than having regular breaks to wash my hands. My skin on my fingers and hands get red blotchy and itchy reaction for a few hours. Moclobemide is quite nasty when you have become especially sensitized to it.

I feel fine today which goes to show that going down is way better than going up a dose with this stuff.

I am about to start the 48ish mg dosage after tomorrow so I'll report back in a few weeks to update on progress and how a 3 week cycle feels.

Edited December 31, 2022 by 6Eggs
Typo

January 27, 2023

Minor update. Now on my 3rd 3 week cycle and doing pretty good, 2nd cycle was virtually additional WD free. Feel a bit out of it on the new cycle of 42.8X mg but not any worse than other 10% reductions.

I managed to talk to the compounding lady at my chemist in person about taking on compounding of the Moclobemide in the next few months due to repeatability of the scales eating into the doses as they get smaller. I got some great info and insight into how they compound and the limitations of that.

Firstly they compound from few, typically several whole and part retail tablets. A machine grinds and adds filler and fills 100 positions in a plate that then loads 100 capsules. The fractions/divisions is what gets your desired dose within what ever fraction is closest. The smallest starting tablet for this process is 1/4 but normally doesn't get less than a few whole tablets for the final CT dose.

She told me they have a +/- 10% for compounding and the retail tablets they buy in also typically have +/- 10% so she said that each of my capsules could be as much as ~20% out from the target. This I said explains why I react better or worse with each batch I have made and why the brand change in Moc was felt strongly.

So basically what I suspected several posts ago was correct, that below therapeutical dose the dosage is hard to control with any reasonable accuracy and depending on the drug can very well contribute to the ups and downs of WD.

As for the SD side of things, that is continuously getting better and the fluctuations are shorter lived than ever before. I am finding that 90% of nights and mornings I have nocturnal erections which was very rare for me for the last 10 years or so. Also the soft glans issue is getting better and better and they are also often decent to good during nocturnal erections which has not at all been the case for the prior 8ish months.

The erection sequence of the glans and shaft have massively improved in the last 2 months I'd say and closer to normal now.

I feel spontaneous arousal often now which is what I felt like prior to the whole depression/fatigue thing and years of these meds.

So far so good. Cheers all !

February 16, 2023

So last update I said I felt a bit funny on the 42ish mg of the Moc, that didn't go away and got worse actually and on my last 7 days I got burning/stinging pain in my saddle area which I rarely get but sometimes do, usually very short lived. Well it was bad and my lower legs and feet were burning like an MF! then my whole body but a bit less than the legs and saddle area. I throught, here we go again! this was very similar to the initial Rexulti WD in Nov 2021. But felt more like a sun burnt stinging sensation and seemed to be amplifed by pressure on the skin/muscles/joints and the heat (heat wave in Aus atm) so less debilitating than the first time but still sucked. I also felt very out of it, mood was unstable but still managable. I forced myself to go to work and I'm glad I did (except for the close to 40c days in a car with no AC and hours of driving).

I had no idea why this was happening and considered extending the dose interval to allow time to stabilize but then thought, hang on, I've had a bad month cycle on the 60ish mg dose but came good as soon as I got to 54mg. So I stuck it out and it was getting worse, the pain and fatigue, complete SD and loss of libido I thought there was no recovery from this but I knew my brain was being irrational as it does when I get bad periods of symptoms.

Also my muscles over my body have been twitching like mad for probably 2, worst are the usual inner quads on my upper legs just above the knees, both are mirror of each other in terms of the muscle and twitching involved. I had them same time last year for about 6 weeks after reinstating the Rexulti.

Well I started the next reduction on the 13th at 39mg and noticed that the burning which was the worst by far after taking the meds at night was no where near as severe the first night of the 39mg. I am on day 3-4 of that and wow do I feel better now. Mind is clear, no weird woozy out of it feeling, no dizzy and feel generally happy. My sexual function started to return back to previously last good state and today just about back equal to last time's best point.

Sleeping great and dreaming. Can get up for work pretty easy at the moment as well. Virtually no pain or burning today during the day but feeling some stinging on my feet and ankles tonight but that was after the meds were taken and fine prior.

It's really odd. Seems like I have crossed some sort of dosing threshold? or that certain dosages have very negative effects and either side are much more tolerable.

If it's stable I'll leave it as is, if not, I can make up a week or so extra tablets at the current dose to allow time to stabilize.

Will keep you all informed. Btw, about 5ish weeks before I start my final 4 month run of Rexulti at 0.015mg before CT. That's 1/133rd of the standard dose. Somewhere around the 5-7% receptor occupancy from my calc.

Take care everyone

April 9, 2023

Been a while and still suffering a lot of the above and some other oddities that feel familiar. I am mentally doing a lot better but still having sensory issues and paresthesia and is pretty apparent that it's cyclic on a 24h period. I get some disorientation and slight euphoric dizziness, myclonus, weird sleep, visual disturbances, sexual dysfunction, burning pain and the paresthesia when I take my meds at night and greatly reduces by morning and during the day but accompanied with stabbing migraines as if some kind of Moclobemide hangover.

My best guess is that I am experiencing the same thing but a much milder version of the initial Rexulti withdrawal + Moclobomide hypersensitivity/toxicity.

My chemist told me that it takes at least 3 months or more for Rexulti to clear which explains the long delayed WD effects. So I think from the previous reduction it took the 3.5 months for the effect to happen and the Moclobemide side effects to be unblocked more than previously.

So I am on the last 7 or so weeks of 0.0158mg of the Rexulti before I CT. The symptoms seem to get better with each Moclomemide reduction even though it brings about it's own acute WD, luckily always short lived and mostly manageable.

Seems like a dilemma with the hit and run, super short half life of Mocloimide and actually tapering it. Can't get any stability due to the aforementioned and can't taper any faster due to the acute WD symptoms for the same reason being a hit and run drug. Basically I'm screwed either way. Moclobemide really sucks, can't wait for the day I'm off it.

June 1, 2023

Titled: Moclobemide interdose WD and reaction post dose SE. (Can I split the dose twice daily to help this?)

Hi all,

Just looking for some advice regarding Moclobemide tapering at low dose (close to completing).

Over time my side effects post dosing and then interdose withdrawal symptoms have become very clearly cyclic on a 24h period with more extremes at each end. Worse reactions after taking the dose and pretty bad WD after the drug is eliminated and then ceases pharmacological action.

I am almost done with the taper, 17.5mm of Moclobemide after seemingly successfully Rexulti taper which I took my last dose nearly 2 weeks ago after a nearly 2 year taper down to 0.015mg from 0.25mg.

However the Moclobemide is really terrible with its extremely short action. After taking it, I get numb face and neck and fingers, slightly reduced sensation in penis and noticeably worse sexual function (even though It has massively improved in the last 2 years). I get a high feeling and feel nauseous sometimes.

A few hours latter, most of this clears and is replaced with often a fast heart rate and some panic feeling (always at 11pm to 12am) This is followed by drastically increased tinnitus and auditory distortions, and also sometimes (but less often now at the lower doses) brain and body zaps that feel like a seizure is coming but never does.

This is followed by early morning and mid morning period of virtually symptoms free but still vague hints of paresthesia (2 years of catastrophic paresthesia that slowly got better as I tapered down both meds, but biggest improvement from Moclobemide reductions).

Then about 2pm to to about 5pm close to the next dose I get burning pain and pins and needles nearly everywhere and generally feel unwell. Worst pain is in the feet, genitals, and face and inside the mouth if it's really bad. (Same as burning mouth syndrome, which can be caused by drugs and follows this daily pattern according to google. It can be so bad that I need ice packs.

My question is, can I split the dose and take them exactly 12h apart? I am taking one dose at 6pm currently. Moclobemide has a half life of 2 hours, peaks in 20min (this is when I feel high and get numb face etc... It's pharmacological actions completely ceases at 16 hours, hence the burning type pain that sets in after that. This pain slowly got more pronounced over many months once I got below about 45mg despite going even slower than the 10% per month. I believe it's because of the dose being too low to limit it's own metabolism and no longer steady in the body as at full dose the liver enzymes are saturated to produce a steady level of drug.

If my logic is sound, do I skip my evening and go to half morning and then start the half the next evening or full evening and then start the halves the next morning. The issue is I have both WB and SEs with this med.

Thanks in advance.

Edited June 5, 2023 by manymoretodays
merged from tapering to member topic, title added

June 5, 2023

Hi 6Eggs,

On 6/1/2023 at 1:40 AM, 6Eggs said:

I am almost done with the taper, 17.5mm of Moclobemide after seemingly successfully Rexulti taper which I took my last dose nearly 2 weeks ago after a nearly 2 year taper down to 0.015mg from 0.25mg.

Just get that date, year, month spelled out, and day noted next to your final dose of Rexulti in your signature please.

Up to you on splitting the moclobemide now or later. Later is an option if you want to give a bit more time since your finishing your Rexulti prior to the next dose change. There may be more to come with Rexulti WD, I don't really know........so up to you if you would like to just observe a bit longer prior to any more drug changes. Changes in spacing should be counted as a drug change.

Your logic sounds good.

On 6/1/2023 at 1:40 AM, 6Eggs said:

If my logic is sound, do I skip my evening and go to half morning and then start the half the next evening or full evening and then start the halves the next morning. The issue is I have both WB and SEs with this med.

Generally to split a dose, we'd advise doing so at an hour at a time each day. Moving it toward or back to the desired time of the split dose. Treat it like the "dose change event" that it is. Meaning no tapering during the 12 days of moving or shortly after. So if you take it in the morning move 1/2 of the dose first an hour after you take it on day one. Day 2, 2 hours. Day 3, 3 hours. And you can stop moving at any time, take a break if needed. Or perhaps you'll get to day 12, with your dose then split 12 hours.......and then take another break from any changes. I do believe you are pretty fastidious on symptom tracking in relation to your drug changes, and tapers, and so expect you'll continue doing that and letting that guide you as well.

Is moclobemide your final drug to taper? Looks like it, from your signature. And forgive as I'm remembering your case today yet not reading back to feel more familiar.

On 6/1/2023 at 1:40 AM, 6Eggs said:

After taking it, I get numb face and neck and fingers, slightly reduced sensation in penis and noticeably worse sexual function (even though It has massively improved in the last 2 years). I get a high feeling and feel nauseous sometimes.

With the split lower doses, maybe the above won't occur. I do follow your logic.

Okay. Appreciate your updates. And hope using some general guidelines to dose splitting will help. I would not just go right to a 12 hour split, but would do it a bit more gradually myself. If you decide to alter from a one hour split to doing a 2 hour split, and then time elapsed would be reduced to 6 days......I could see that.....giving your self management and observation to date. That would be good if you no longer got the immediate effects of numbing, and feeling high and nauseous.

Best. L, P, H, and G,

June 6, 2023

Thanks for the reply.

Yes, Moclobemide is my last one. I've been pretty well considering so I forgot about updating my sig and haven't been active for a while.

So rather than moving one dose later, I could move one earlier instead? I take the Moc at 6pm or as close to it as I can.

For the adverse reaction upon taking my dose, I found that the mentioned high feeling, numbness/burning and feeling sick etc... This happens within 10min of taking the dose, but on an empty stomach. However if I take it with my dinner, especially in the middle of eating it, I don't get the acute reaction but rather it comes on much slower and lingers longer. The numbness isn't as bad and I don't get the high feeling or nausea either. But the burning is really bad! and I feel wired. The buring is more intense and lasts longer than the acute reaction on an empty stomach. The acute scenario seems to trigger worse symptoms during the day too.

During the day I am starting to stabilize and feel better but still weird mild metallic pain/feeling which is also in my mouth (I don't know any other way to explain it).

I have reduced the Moclobemide quite rapidly over the last 4 weeks and holding at the moment until things settle so a lot of this pain is very likely the Moclobemide WD/SE, I have had weird pain from larger reductions before on this med. The interesting thing with reducing Moclobemide is lots of smaller consecutive reductions give me the best improvement and reduction in symptoms up until the cumulative effects catch up and then it's bad, luckily only for a number of weeks at most before clearing up. Going very slowly seems to just aggravate the side effects so I rather suffer short term every so often and get some relief than constant side effects which I feel are worse (in a mental torture sense). This last point I am 99% sure nearly all my symptoms are the result of sensitization to Moclobemide from using Rexulti rather than WD from the Rexulti itself.

The well documented side effect and WD profile of MAOI and RIMA very closely match my WD/SE symptoms and not at all for modern antipsychotics (Rexulti and Abilify especially).

As the Rexulti reductions (in amount, not %) got smaller, the WD got less and less, to the point I basically was hard pressed to pick them from the daily fluctuations and they were very short lived unlike at the beginning of the taper. This recent CT did get some acute WD but they were all the same typical ones condensed into about a week and how have cleared it seems.

This has left a situation where tapering off the Rexulti has been pretty straight forward but as I've tapered off the Rexulti the Moclobemide has become much more sensitive and thus harder to tapper off , then in turn fallen behind the Rexulti which it had a countering effect to the Moclobemide, which then aggravates the Moclobemide more.

Ideally I would have tapered off the Moclobemide first but since I tried to stop Rexulti the first time leading me to WD so I didn't even consider the Moclobemide until many months later nor did I know it was the source of most of my symptoms. So all the above factors are like a catch 22. And I also didn't have any of the info or experience that I have now.

I am so close now and I expect as I have now seen from the more aggressive slide and hold taper that the persistent symptoms are recovering quite quickly now which tells me I should recover with some time once I am off everything.

So hopefully the split dosing should help me get though the last of the taper a bit easier.

I read magnesium can be helpful for these sort of sensory symptoms. Do you recommend any particular type of magnesium supplement other others? Oxide, citrate, etc...

June 6, 2023

Oh and I forgot to mention I found this PDF from the tapering strips company on Moclobemide which had a gold mine of impossible to find info. Tapering schedules and also occupancy data.

I used that as a guide and compared it to other drugs they do and it suggests that Moclobemide taper is pretty quick compared to most drugs, I used their slowest taper and halved it again to be safe as a guide but in my experience as above, at least for me anyway a stabilizing period is needed often. (which they do have that as an option when ordering)

https://www.taperingstrip.com/download/moclobemide-aurorix/#

I looked at their antipsychotic PDFs and I was pleased to see I had tapered down to absurdly small doses as exactly suggested by their documents. Even the taper period I chose was appropriate it seems, longer actually. Very encouraging!

June 6, 2023

28 minutes ago, 6Eggs said:

So rather than moving one dose later, I could move one earlier instead? I take the Moc at 6pm or as close to it as I can.

Exactly.

Then when tapering resumes, and I would give tapering a break for at least 6 weeks or so, once you've got the 1/2 dose forward.

Doesn't Rexulti have the long half life? And what I think about the long half life drugs......is that WD often hits much later.......creeps up and surprises one, after 3 months off or something. All I'm saying is don't hurry scurry to the finish line now. Yes, encouraging.......all that you've found. No need to rush into being off both drugs though........from my perspective. I would hate to see you hit hard with WD 3, or 6, or months later is all I'm saying........I'd do everything possible to avoid that. A slim chance of dopamine supersensitivity psychosis could occur, way out after any AP, I would presume too. And. I wouldn't wish that on anyone. Especially if you've never dealt with any psychosis ever before......that could get tough.

With the split doses of moclobemide, once you get there (And maybe a 10 hour split rather than 12 hour if you sleep past 6 am now??)...... Up to you. Anyway, once you taper again, take off your 10% or less- from both doses. It's the same as when you take the 10% off the total dose. You'll see when you work the math.

19 minutes ago, 6Eggs said:

Oh and I forgot to mention I found this PDF from the tapering strips company on Moclobemide which had a gold mine of impossible to find info. Tapering schedules and also occupancy data.

Awesome. Very cool. Occupancy data doesn't always take into account the individual though, their specific history with drugs, and previous tapers or not, and just.......well, all kinds of things. It IS cool to get/see/find that information though!!!

Keep it cool 6Eggs. I prefer citrate or glycinate or good old magnesium sulfate in the bath. Only one of the 3 though in any 24 hours. The epsom salts(mag sulfate) really help with muscular type tension, even in much less than the package recommends for me. Total relax. Best at bedtime for me.

Happy tapering 6Eggs. And don't ever worry about HOLDING too long. HOLDING is great. Look how far you have come. And I know you don't want to get stuck on any other psychiatric/ psychoactives in your future.

June 6, 2023

I just spoke to the pharmacy. They haven't made my doses yet luckily. I asked them if they can split it but since I am going to the doctors for an unrelated matter, I'll ask him to do a new scripts to reflect the splitting. I'm also going to extent the dosages a few weeks more per dose to give me more headroom. Also will ask for a separate script (for several weeks worth) for the current dose so its more stable and also split so I can do that before the next reduction which is the other script. Obviously not now but some weeks down the track. I don't want to split it and drop a dose at the same time.

Yeah I have that fear of a delayed acute WD from the Rexulti, hopefully not. The first time I had WD immediately after reducing it, but the full blow neurological stuff happened exactly 8 weeks after my last dose of 1mg. Obviously way too big and quick of a jump but that was the only info and recommendations I had at the time.

I reckon I got some form of psychosis at the nearly 4 month mark but that was immediately after I reinstated and that lasted several weeks, the auditory hallucinations where there in small bursts for several months as well as the visual ones, but visual ones aren't psychosis as far as i know? These all cleared up as I tapered. Rexulti is not know for WD induced psychosis but it might still be possible. Being a partial agonist makes it far less likely. I reckon a lot of the Rexulti WD I had/have is from the extremely potent alpha and serotonin type 2 antagonism.

A lot of these mental and sensory feelings I had when I tried venlafaxine many years ago, an SNRI. I CT after 2 weeks I recall as it was unbearable. I was in pain, angry and couldn't stand being around people.

A very knowledgeable chemist at the compounding pharmacy said that Rexulti takes about 3 months to fully clear the body. 91h half life doesn't really account for this but it lines up with my experience of how the WD got worse with time and peaked about that 3-4 months.

I suspect that it's because it's fat soluble and maybe accumulates in some tissues perhaps.

June 17, 2023

The last few weeks have been unbelievably awful. The Rexulti WD kicked in full swing about a few days after my last post but a little different to the first time.

Firstly it seems much more acute this time (minus the vertigo I had the 1st CT in 2021) and condensed, I feel like I had 4 months worth of WD in 2 weeks.

I had become extremely intolerant of the Mocbolemide to the point of extreme raw/burning/electrical pain in almost all of my body but worst in my private bits, feet and mouth and esophagus, extreme disphoria and mild suicidal ideation. I had something that looked like parkinsons when trying to do fine motor skills and the more I tried the worse the tremors. I had this symptom lots of time for a short period during the early stages of re-tapering. This has cleared up already.

I took a week off work and was basically bed ridden for a good part of it.

About a week ago, I started to get more tolerant of the Moclobemide and thanks to the suggestion of the magnesium. I got a pretty high dose from the chemist and this had the same effect as taking 5mg of Valium (when Valium worked as intended pre PWS days). This got me through the worse of the Moclobemide sensitivity and now I can take it without loosing my mind without the magnesium.

I got my compounded split dosing of the Moclobemide 2 days ago, a little higher dose than what I was on, 18mg, they couldn't do 17.5 due to the way they fraction it. So the first night I took it an hour apart straight away and first capsule was not felt, the 2nd made me ill and I had a bad first half of the night, tonight I did 2 hours apart, I still felt the effects of the 2nd dose but not anywhere near as bad. This is a good sign so far.

I don't know how I managed to get through this last 3 weeks but knowledge is power I guess, the sheer will to hold on and not give in to doing anything drastic really surprises myself.

I am still having a lot of symptoms but they are getting better pretty quick it seems, even when some days feels like a few steps back. The pain is really odd sometimes, like a 9v battery on your tongue sensation but in your private bits and saddle, feet as well as the mouth itself. The type of feeling changes often and also have almost completely pain free periods and even whole days.

Even my libido and sexual function has bounced back to a reasonable level after probably the worst crash in almost 2 years, although orgasms can still be quite painful, especially immediately after, with the same 9v battery on tongue type of sensation and pain. The pleasure of them is still great though, even with the side sensation of pain.

The mental turmoil to almost normal happy me and stability seems almost incredible considering what happened.

Definitely not out of the woods yet as the Rexulti is still probably in my system and slowly eliminating the remainder, so I expect symptoms to fluctuate, maybe worsen in some cases for a while before it's completely cleared and my CNS can start to stabilize and repair.

Many of the symptoms have diminished and morphed back into the common persistent ones I had before which almost cleared completely before the CT of the Rexulti, these are the soft glans (though still heaps better than it was even 6 months ago) and the non sweating hands and feet is quite bad at the moment, but almost isolated to after taking the Moclobemide at night.

Interestingly, no real numbness, a few small bouts of very mild numbness in the inner thigh and groin area that cleared within an hour. This pain is a real downer though and quite persistent even if I have periods pain free. I had this type pain the very first time I tried to reduce Rexulti. But that said, it's most definitely not as painful as the last 2-3 weeks.

It's encouraging to see pretty quick play out of symptoms and then improvements shortly after. The 1st time I tried to quit Rexulti, symptoms were relentless and just got worse by the day for months on end until reinstatement was necessary, which is turn also brought it's own severe side effects on top of the PWS.

I'll keep updating as I go.

July 7, 2023

Well things have tuned out interesting. As the above post, the acute withdrawal of the Rexulti cleared and there was the remaining lingering symptoms as always from the past several months.

What seemed to be improvement over the next few weeks played out the same way as the first time I tried to quit Rexulti. A delayed and pretty severe protacted stage which is where I am at now.

I had the return of the burning raw electric neuropathic pain in the saddle/private area, lower legs and feet and this time ( although I had it for a short while in early 2022), very bad same type of pain in my mouth and lower face. Then I felt out of it and uneasy although this has improved to the point I can manage day to day but still feel down often from the feeling and the pain.

a few days into this protracted stage I got the odd lower lumbar and saddle clenching feeling, the sweating of the lower lumbar as well as the feeling of needing to hold No. 2 even though there was nothing to hold. Then within hours I felt unsteady in my walking and my legs felt like they were lagging in the spacial dimension and out of sync from the actual movement, yet I could walk fine like nothing was wrong. Everything felt like this in some odd way or another for a day or two. I had this for several weeks the first time I CT, this however lasted less than a day for the former.

I had/have the tactile/pressure echo effect I also had the first CT. When I touch something or sit, pressure on any part of my body. I get pins and needles that kinda echos the original moment of actually touching, this feeling can echo on for mins in a cyclic fashion or be "stuck on" for hours in the worst case.

The pain is the one symptom I hate the most and it's accompanied uneasy feeling. Mainly the private/saddle area and mouth. The legs and feet are tolerable and are more of a hot stinging sensation (like direct summer sun on your skin). The former is like a raw electrical burning pain, like licking a 9v battery all day but also in your private bits.

Sex is pretty much a no go for me at the moment, orgasms are pleasurable but also hurt with the same electrical burning pain an arousal itself amplifies the pain else where, including my mouth. The soft glans syndrome is back again and pretty bad but I have had worse, it may get worse yet but it always gets better again when I reduce the Moclobemide, so it seems like a drug interdependence type symptom.

Some of the positives are, I sleep well and have no more shock/jerk sensations when falling asleep. I got them often after reducing the Moclobemide but didn't get any since I CT the Rexulti. I do wake up feeling emotionally in pain sometimes but even that seems to have stopped for now.

Also no real numbness but I do have off sensations that feel wrong/uneasy in some way I can't describe. So I think the numbness was the Moclobemide at higher doses doing that, the Rexulti just triggered it or sensitized me to it.

Muscular contractions and twitches have all but stopped and even when I take the Moclobemide I rarely get them now.

My WD symptoms seem to look more like opioid or DAWS than an AP. But reading about Abilify withdrawals, Rexulti being a successor to it, they work very different to other APs. They don't really know how either of these 2 drugs working but some studies suggest it increases or agonies dopamine in various parts of the brain as oppose to blocking like other APs do.

A study I found that burning mouth syndrome in some people are a subset of RLS (which I have) which, is a dopamine system disorder and treating it with a dopamine agonist stops the symptoms (until it's augmented).

I am hoping it's not something like DAWS or similar dopamine desensitization. I have not read good prognosis on dopamine system adaptation from drugs, they are often hard to reverse and permanent in quite a few cases.

The Moclobemide side of things are steady at the moment. Still on the same dose but split and separated by 2.5 hours. One at 5pm, the other at 7:30pm. That was enough to reduce the severity of the peak, even though the symptoms still arise from the doses, nearly all from the 2nd dose.

I have hope although not much, that the burning symptoms and the rest are a paradoxical reaction from the Moclobemide but I think most likely it's the Rexulti.

Although, when I was able to maintain a closer ratio of occupancy between both drugs my symptoms were the best they had been during this whole taper journey and if the Moclobemide vs the Rexulti was higher than 2:1 then my symptoms got worse and reemerged pretty badly. Of course that Rexulti is probably close to or already eliminated, the Moc is completely dominate now.

My symptoms were pretty good when I reduced the Moc more than usual towards the end but the Rexulti CT flipped the symptoms back towards similar ones I had when the Moc was a much higher dose.

I guess time will tell if this is going to get worse before better, so leaving things as they are for now.

August 14, 2023

Another update.

Since quitting the Rexulti, things have been generally pretty terrible but starting to look up and make clear sense now.

As warned I did developed some pretty nasty psychiatric symptoms pretty badly many weeks later, my partner was actually scared for her and children's safety after I told her some of the horrible intrusive visions and thoughts I was having. She was convinced it was psychosis but I reckon it was more similar to OCD but without the physical compulsions.

They cleared up after a few days but I still get annoying somewhat intrusive thought tangents and just odd stupid thoughts.

The good news is, it's not so much the Rexulti WD but I now know it's sensitivity to the Moclobemide as I only get them after taking it at night with the other adverse reactions.

I have also developed intermittent extreme fatigue, muscle tightness and pain and weakness, mainly shoulder blade to torso muscles and connective tissue and lesser in my lower legs and forearms. This is the exact same fatigue and weakness feeling I had that started the whole drug saga, misdiagnosed as depression but later somewhat diagnosed as CF. Now I am starting to think I have always had some sort of autonomic dysfunction that gets triggered by environmental factors. It's very likely I am on the ASD and autonomic issues apparently go hand in hand with ASD people.

The biggest difference is this not relentless like years ago but intermittent and way more intense. Often starts 5 min within waking up symptom free. I read that Moc has this as a side effect which could explain why I felt like this for many years while on it. Sometimes after taking it at night, I get this plus extreme muscle stiffness, all over, in my neck and feel like I am going to pass out. My breathing can become labored and shallow too. Doesn't always happen though, but always have some sort of an adverse reaction to Moc for the last 2 years post Rexulti.

This clears up after 30min to an hour. But after such reactions I have a bad mood and fatigue, stiffness for a few days after more than normal.

My sexual functions slowly got worse with time and is mostly terrible. Low libido too. Sometimes it improves for a short while before going bad again for ages.

The other night I forgot to take my 2nd dose for the night, I felt sooo much better that night and the next day. Happy, much better short term memory and less sensory issues. My libido went up and for the first time in many weeks was able to have almost normal erection without much effort, and perhaps in more than 2 months almost normal glans erection.

I am 100% convinced the Moc is basically poisoning me. So I can't wait to get off this crap, but must carry on and stick to the plan. I am waiting for the 6.5mg x 2 compounding currently. Interestingly with the last few reductions/adjustments while Rexulti free, the Moc WD didn't seem to materialize. When I was on both, the Moc reductions were extremely sensitive and always accompanied by night time sleep/brain and body shocks and what I swear were basically some sort of seizure. I have not had any of that this time after Rexulti has been out of the picture. Hopefully that means tapering Moc will be easier going forward.

September 6, 2023

I feel like things are getting worse, more so the reactions to the Moclobemide at night, and if I have a bad reaction I am crook as for days. I had the worst reaction 3 nights ago and have to take the week off from work. I was completely bed ridden the other day, so much intense nerve like pain. Always multiple times worse after taking the Moclobemide at night.

The last few reductions have yielded immediate relief but they only last a few days at most before feeling crap again, and then the reactions at my dosings are more severe.

I feel like this is my CNS and body trying to reject the drug, feels like it gets used to the reduction briefly before more aggressively trying to reject it once I hold.

At this point I am not sure if it's wise for me to continue to keep taking it as holding and tapering are not really working. The rexulti seemed to have kept the worst of the symptoms at bay, even though the rexulti kicked off this whole chain of events and as it's slowly cleared from my system the symptoms that always improved with Moclobemide reductions have reverted and in almost full force.

The odd thing is, my psychiatric symptoms aren't that bad, the intrusive thoughts went instantly and completely once I went below 15mg after CT the rexulti so I know the moclobemide is driving a lot of the symptoms. I just have this agonizing relentless nerve like and burning pain and very bad sexual dysfunction which include a lot of this pain, and dry hands and legs from lack of sweating and some digestive annoyances and just a generally noisy sensory experience, oh and altered sense of taste. The numbness I had in the past hasn't really reemerged which is great but the odd skin sensations can feel like slight numbness at times, mainly in the face and fingers.

All of my symptoms are listed as the more severe adverse symptoms listed for Moclobemide and RIMA/MAOIs in general. I am not even that convinced that it's WD much at this point, other than sensitivity and some lingering things from the rexulti, rather a continuous adverse reaction to the moclobemide.

I am currently on 12mg over a split dose. Probably still too high and early to just CT, but when I have accidentally skipped one of the 2 doses it's like magic! I feel like myself again but that seemed to have aggravated the sensitivity to the drug days later. The planned tapering reductions do the same but more drawn out, good for 3-4 days and then followed by worse symptoms even if I hold for a good while, primarily within minutes when I take them at night that is. I am somewhat ok in the day. But if I have a bad reaction at night, I cop it for days after, day and night. I am currently in one of those states still from the bad reaction 3 nights ago.

September 30, 2023

Going in for surgery- Have choices of drugs but don't know which to avoid?

Hi all,

Bit of a side update to my journey, more info below but I started a new thread as this one is a bit of a different situation to my norm.

I am going in for surgery early next year under general anesthetic. This is for wisdom teeth removal, I have 2 that need to be done in the operating table as they are basically inside my sinus cavity and will damage my other teeth if I don't get them removed.

I have attached a print out of the drugs involved. Since it's general anesthetic I won't be on sedatives like Valium, although I don't have long lasting problems with benzos, I have only used them once off here and there in the past and even in the worst parts of my WD they weren't too bad.

Anyway, don't worry about the anti-inflammation drugs, I can't have them anyway due to adverse reactions.

My worry is the variety of pain killers on offer. I assume these are opiods? I don't know how I will react as I can't even recall when I last have opiods, maybe 20-25 years ago? Morphine for appendicitis when I was 11.

My biggest concern are the antibiotics, I heard some stimulate serotonin receptors and anything that even mildly stimulates or blocks serotonin in my body is a big no no!

There are a few types I can choose and my surgeon listened to me about the WD I am currently still having and my sensitivities. He encouraged for me to do some research so I know which to avoid as he knows well that adverse reactions are far worse than the surgery itself. Very rare and refreshing to hear a doctor acknowledge WD syndrome is a real thing.

My main thread and all my WD history can be found on this link.

Thanks in advance!

https://www.survivingantidepressants.org/topic/27713-6eggs-rexulti-severe-neuologicalfunctional-pws-anyone-else-experience-this/#comment-659847

Edited October 1, 2023 by manymoretodays
merged to Introduction topic, title added

6Eggs: Rexulti - severe neuological/functional PWS. Anyone else experience this?

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