YellowRoses: the beginning of the end of psych drugs

[Gridley]

YellowRoses,

 

I decided on magnesium glycinate after doing a good bit of research.  It is, as far as my search told me, more assimilable than other mags, but most importantly, is better at dealing with anxiety.  Don't take too much of any mag as it can have a laxative effect. Vitamin D is a common deficiency in those in WD, so I opted for that.  Omegas (and mag) are recommended by SA, so I went with that. The probiotic I take because of a preexisting colon condition.

 

Start one at a time on a low dose.

[YellowRoses]

Thanks Gridley.

[ChessieCat]

Only ever make one change at a time:  Keep it Simple, Slow and Stable

[YellowRoses]

What a palaver! It took a few days for the compound to be made up and I had arranged for it to be sent to my local pharmacy. I went to the pharmacy to check they were happy to receive it and they were. I left my phone number (I have all my scripts from this same chemist usually) It arrived and no one called me, I dropped in to check if it was there and they said no. I waited a further 5 days and then called to see if it was there. Yes. It has arrived 6 days ago! So now I have the compound in hand - I started my taper last night. I take morning and evening - so today is the first full day taper. YAY! I am on the road.

 

I am going to switch to a compound pharmacist closer to home so I can drop in the scripts and pick it up, I am concerned it took 18 days to get my medicine in hand. I must keep an eye on the lead times and switches via my spreadsheet to make sure I am not running out!
 

So I have just done a new sheet in my spreadsheet with all the dates, allowing 14 day lead from script at pdoc to compounds in hand. I am basing my lengths on my first taper at the moment (as 200 days) - the first drop and stabilize will be months long because I am going on holidays about the time the next taper/drop would be done (all things being equal) - I will maintain on the first taper through until the week after my return.  The taper after that will be (give or take 7) weeks. 

[YellowRoses]

Day 7 of 10% taper. Seroquel (Quetiapine) down from 200mg pd to 180mg. (My first week of withdrawal).

Am keeping a diary in a spreadsheet. Main symptoms are muscle stiffness,intermittent chills, a rash breakout in my scalp, generally feeling inflamed - so a mild immune response.

Mood is labile, but I might be coming down from a 2 month hypo. Am emotional, reactive to sad input.

Have been very clear about practicing distress tolerance. That if I am starting to 'lose it' because I am anxious about internal dialogue/symptoms to just sit with it and be calm about it, not to ramp it up as worse than it is.

So far then, so good.

[Gridley]

Sounds like you are doing very well, YellowRoses.  

[YellowRoses]

Day 31. At 10% of original 200mg dose Seroquel XR. Have been incredibly irritated and moody last few days. Including reflux, feel generally unwell and sore and inflamed joints. Muscular pain. I don't know if this is part of the withdrawal or just my usual chronic sensitised pain and fibro type cycle. 
Anyways - have ordered more of the 40mg to keep me at the 10% step down from original dose (was 200mg now 180mg) through to late Feb., I am going to be away in Jan/Feb and did not want to risk adverse events on the next 10% drop. Around 25 Feb I will taper again from 180mg to 160mg. Good news is I am DOING IT!

[ChessieCat]

Just want to make sure that you know that the 10% reduction is on the current dose, so following SA's protocol you next reduction would be 180mg x 0.9 = 162mg.  And if rounding you should round up, not down.

[YellowRoses]

2 hours ago, ChessieCat said:

Just want to make sure that you know that the 10% reduction is on the current dose, so following SA's protocol you next reduction would be 180mg x 0.9 = 162mg.  And if rounding you should round up, not down.

Yes - thank you. I do know your protocol. 

[Carmie]

Hi YellowRoses, 

 

Just wanted to wish you all the best with your tapering. I’m tapering off Seroquel as well. 

 

Sending hugs🤗

 

 

 

 

[YellowRoses]

2 hours ago, Carmie said:

Hi YellowRoses, 

 

Just wanted to wish you all the best with your tapering. I’m tapering off Seroquel as well. 

 

Sending hugs🤗

 

Thank you Carmie - all the best with your taper too. How far along are you?

 

 

 

[Carmie]

Hi YellowRoses, 

 

I’ve tapered from 300mg down to 7.5mg. I will be doing the brassmonkey slide next so it might take me another ten years or so to get off that. I can only taper by 5% each time. I’ve never done the brassmonkey slide but it’s pretty much whatever percentage you taper per month gets split over four weeks. 

 

That means I will be tapering by 1.25% each week for four weeks and then having a two week break inbetween the next week. So it’s pretty much 5% every six weeks. I will tweak it though and maybe will be able to go a bit faster. I don’t work according to a calendar, I work according to what my body can tolerate.

 

Check out the brassmonkey slide. It’s on the top of the first tapering page. 

 

I changed to compounded capsules over four months ago and I went into bad waves for over three months. I’ve decided to go back to the tablet and water titrate that like I was doing before as brassmonkey said it’s better sticking with the original tablet if you can as it’s more accurate. A lot of people have gotten off meds using compounded capsules too though. I just decided that I wanted more accuracy, especially when I’m down to the teeny tiny doses. I won’t be jumping off until I’m down to 0.0something. 

 

I have stabilised now and will probably go back to the tablet in January some time. I will cross taper this time though and hopefully it won’t take me three months again to stabilise. Time will tell. I’ve gone backwards but no use crying over spilt milk🥛😃. 

 

Again, all the best with your tapering, keep us updated with how you’re going💚

 

 

 

[YellowRoses]

Still here, still tapering, down to 80mg morning and night (from 100mg mornign and night). Everything going fine. No major brain glitches.

[ChessieCat]

That's good to hear.  Thanks for updating us on how you are doing.

[Carmie]

On 2/26/2019 at 3:12 PM, YellowRoses said:

Still here, still tapering, down to 80mg morning and night (from 100mg mornign and night). Everything going fine. No major brain glitches.

 

Hi YellowRoses, 

 

So glad to hear that your tapering is going along smoothly. Could you please update your signature. Thank you.💚

Edited March 4, 2019 by Carmie

[YellowRoses]

Along with withdrawal of course, is also living the symptoms of trauma related injury. I took an as needed extra dose (25mg instant release) of seroquel last week for the first time since I started withdrawing, it hit me much harder than it used to. Have been through the mental mill since last Wednesday - and feeling a bit stretched emotionally.Not sure how much has to do with the recent drop down in the taper and how much is just a reaction to a family stressor. Anyways - I am still keeping on. WIll do next taper to 73 mg morning and night down from 80mg morning and night in about 4 weeks or so.

[YellowRoses]

The Five Percenter
It has been 6 months (started 16 November 2018) since I began to taper from Quetiapine XR 200MG pd. (100 night/100 morning). I started of at the 10% taper as suggested in this fabulous group - but soon found this to be too much, too soon. I started to experience brain zaps and thermal dysregulation, shakes, lability of mood and insomnia. The insomnia particularly is a major problem as it tends to kick me into mania. So I am now going about it slightly differently, I drop by 5% over about 1 to 1 1/2 to 2 months, this means that I maintain a current dosage for my night medications and taper my morning one by 10% of the current night dosage for about 50 or 60 days (approx), then taper the night dose by the same amount and hold.
It is a longer process, but I am finding less withdrawal symptoms and much easier to cope with. It looks like this... current doses 

last
Night 73mg x 50 days
Morning 73 mg x 50 days (or there abouts)

now
Night 73mg x 50 days
Morning 65.5mg by 50 days

then taper night to...
Night 65.5mg x 50 days
Morning 65.5 Mg x hold

then taper morning...
Night 65.5mg x 60+ or so days
Morning 59mg x 50 days

and so on. 

I am not advocating this for anyone else just sharing my experience and how I am approaching it. If it is a struggle at 10% going slower can help but it means tapering for much longer.

Have had a few problems getting the compounding medication delivered so now preorder 4 weeks in advance but even that has proven a problem when a script was misdirected, it takes me 5 to 7 days to find out a script has not arrived, and recently a script did not arrive twice despite me calling them about it. So as a friendly warning for others - make a long term plan for scripts if you are having to get them compounded and delivered.

[YellowRoses]

Has anyone else coming of seroquel found generalised increased body pain to be part of withdrawal symptoms?

[YellowRoses]

Well here we are two plus years in - after a couple of years of instability of 10% tapering quetiapine - I got down to exactly half of what my starting dose was. I just stopped withdrawing from the medication and wanted some stability for a while. Then in November last year I was ready again, and instead of the 10% and all the palaver and cost that went with getting compounding medicines made - I decided to trial a 50% drop off (which is the smallest I can given the medication mg I take they are 50mg each XR tab) in the full knowledge I may be causing amajor issue. I no longer had the same doctor who helped me taper prev and I did not feel up to educating my new doctor. Since dropping the 50% I have been grumpy and short tempered - but not harming anyone, just a short wick when frustrated. Then calm down again pretty quickly. It has been three months. I intend to stabilise on the 50% (50mg) for a few more months/year and then trial again the drop off. I am still on mirtazapine, although after getting down to 100mg of quetiapine we reduced my mirtzapine to 30mg (from 45mg) because it was way too much with less quetiapine on board. It may be the cause of my frustration nd short fuse being too much now I am only on 50mg quetiapine.

So in summary while I followed the 10% taper method i was irritable and moody for over a year, I did it and got to 50% of initial dose and then held for a year.
Now, I have taken the leap to 50% of that dose of quetiapine. I would not recommend doing it this way if you were working or parenting - but I am in a safe unique environment, supported at home and no real responsibilities or expectations on me other than to be a nice person to my partner and dogs.