Robynne: tapering Neulactil

[ChessieCat]

29 minutes ago, Robynne said:

I’ve also wondered if maybe cutting the tablet is effecting my stomach lining , just a thought 

 

From https://www.medicines.org.uk/emc/product/3970/smpc

 

 

Quote

 

3. Pharmaceutical form

Pericyazine 2.5mg Tablets:

Circular, very pale lime-yellow tablet, with one face impressed 'S171' just inside the perimeter. Break-line on reverse.

 

 

This means that the tablets can be cut in half.

[Robynne]

No I haven’t read any other forums I guess me being 62 I didn’t think of breastfeeding but I’ll look I see your point, yes sleep is a big problem in the night you get desperate. Then in morning it’s hard to function that’s why I’ve taken this stupid pill for so long I reckon. 

[ChessieCat]

32 minutes ago, Robynne said:

No I haven’t read any other forums I guess me being 62 I didn’t think of breastfeeding but I’ll look I see your point, yes sleep is a big problem in the night you get desperate. Then in morning it’s hard to function that’s why I’ve taken this stupid pill for so long I reckon. 

 

I found the answer to your question and posted it.  If the tablets have a break line it means that they can be cut up without causing any issues.

[Robynne]

Oh Thankyou for that! I missed that reply. I no the new doctor is also looking into wether I can take capsules I don’t really understand why she queried it but I’m driving to see her Monday and she might have found out,at least she seems willing to taper me unlike  doctor that scoffed at me last year and told me to just stop taking them or stay on them he said it’s your choice

[ChessieCat]

4 minutes ago, Robynne said:

new doctor is also looking into wether I can take capsules I don’t really understand why she queried it

 

Possibly for compounding.

[Robynne]

Ok! Also I feel like I’ve improved as the day going on 

[ChessieCat]

25 minutes ago, Robynne said:

Ok! Also I feel like I’ve improved as the day going on 

 

Phew!!!  I am so relieved to hear this.  I know how horrible it is to feel awful but have no choice but to wait for things to improve.  And I've been reading about members' frustration for the last 7+ years.

 

Here is hoping it continues to improve.

[Robynne]

You have been amazing support I feel you no more than all the doctors I’ve been to.

[ChessieCat]

You are welcome.

 

It's only what I've been fortunate to learn from Alto and this website and I suppose my own experience trying to get of Pristiq, and a previous cold turkey off citalopram.  I have also done quite a lot of research of my own; read books and watched videos.  There are some drugs or drug combos and some members whose situation is too complex that I cannot help with other than with basic things.  And I only know a little bit about benzos.

 

Your drug is one that we have not had much experience with here at SA.  And it is not available in the USA which makes it even harder to find the information about it.  But I do enjoy searching for things so it wasn't a chore for me.  I've also been at home with a cold for 1.5 weeks (this time) so haven't been at work 3 days each week so have had more time.  I've basically been trying to use all the general knowledge about psychiatric drugs and apply it to your situation.

 

I did check with Alto about your situation and she confirmed that my suggestions seemed okay.  I was glad to hear that.

 

By the way if you do have any issues with compounding, you can always contact the pharmaceutical compounding body direct, or get the pharmacist to do this.  There was a member who was told by pharmacies in the US that their drug could not be compounded (I had information from SA that said it could but the member needed to advocate for themselves and it is better to get it from the horse's mouth) so I contacted the US body and they were very helpful.

 

Q:  Have you tried making a liquid from a tablet or part of a tablet?  It might be worth trying that to see if it will dissolve.

[ChessieCat]

You might not have read about what happened to me.  I think that is one of the big things with SA is that the staff are peers so we know what crazy things these drugs can do whereas medical professionals just don't understand and some of them think it is in their patient's head (even phyiscal symptoms).  When I first reduced my Pristiq I had an upset tummy for a few days and just naturally thought it was something I had eating or a bug.  It wasn't until I saw the list of withdrawal symptoms that I realised it was from reducing the drug.

 

I've had two completely different experiences when getting off two different drugs. 

 

The first one citalopram (which I later learned had reached tolerance which is why it felt like the drug wasn't working and I decided to stop it because I figured if it wasn't helping why keep taking it) I cold turkeyed and felt fantastic for about 2 months (another sign of poop out), then I got sick and was bedridden for 2.5 weeks and lost 8kgs because I couldn't eat.  I ended up on a different AD (told by counsellor that the CT and "relapse" meant I needed an AD for life like a diabetic needs insulin - GRR), because I didn't know at the time that I was suffering from withdrawal. 

 

The second experience was in reducing my Pristiq dose by 50% (I had discovered from researching that the symptoms I was experiencing were mild serotonin toxicity; as my dose got lower this reduced).  I had extreme cog fog and even walking took my full concentration.  After 2 weeks I was unable to type.  I'm a professional typist so had a bench mark.  SA suggested taking more of my drug which I did.  About 4 hours (not days) later I was able to type again.  Because of the bench mark I knew it was the drug.

 

And after a 6 year taper I have now been off successfully for 8 months.

[ChessieCat]

Score!!!  I love it when I find the answer to something that I have had trouble finding.

 

Q:  Are you able to tolerate a small amount of alcohol.  According to the following is it fairly soluble in ethanol.

 

https://www.nps.org.au/medicine-finder/neulactil-tablets

 

Quote

 

6.7 Physicochemical Properties

Periciazine is 2-cyano-10-3'-(4- hydroxypiperidino-propyl) phenothiazine.
Periciazine is a yellow crystalline powder, almost without odour, nonhygroscopic and sensitive to light. It melts at about 115°C. The molecular weight is 365.48. It is insoluble in water, slightly soluble in ether, fairly soluble in ethanol, acetone and benzene and freely soluble in chloroform.

 

 

 

This is worth noting too:

 

Quote

Periciazine is a yellow crystalline powder, almost without odour, nonhygroscopic and sensitive to light.

 

There is some information here about making a liquid using alcohol/ethanol.  Sorry but I don't have the patient to read through it.

 

However the basic idea is to dissolve the crushed tablet in a small amount of alcohol and I think the post says 95% and then add water to it.  You would need to measure both the alcohol and the water so that you make the same thing every time.

 

information-for-making-liquid-benzodiazepine-preparations-by-brassmonkey/

 

There might also be some information in this topic:

 

how-to-make-a-liquid-from-tablets-or-capsules

 

[ChessieCat]

3 hours ago, ChessieCat said:

Have you been on any other forums (eg breastfeeding)

 

I might have got this drug mixed up with a different drug that several new members are having difficulties getting off.  I cannot remember the name of the drug at the moment.

 

Q:  Were you prescribed periciazine for anxiety?

 

If yes, and you have a tendency towards anxiety, then it will be important to learn and use non drug ways to cope.  Obviously wait until you start to feel a bit better.

[Robynne]

I have found your story interesting and I feel the pain. I have had so many ups and downs with this drug, last year was horrendous I was sick for four months after halving the tablet for a week, my doctor said it wasn’t the drug causing me that much agony and eventually I was treated for a bacteria called heliobactkr pylori I. The stomach, the drugs for that were shocking hence why I’m supposed to take nexium still . I’m so cross with myself for obeying the doctor 7 weeks ago and just about cold turkeyed off peri and got switched to mirtazapine, how bloody stupid was I believing her, it was her father who last year said I was ridiculous wanting to taper. I feel like the last 12 months has been a nightmare. 
 

I will read the info on refining the tablet with alcohol looks interesting but I’m worried about making my own medicine. I’ll see what this lovely new doctor comes up with

 

i was originally prescribed for an itching disorder during menopause, I presume it was thought I had anxiety That’s why I itched . I certainly have anxiety now particularly after chronic nausea for 4 months last year , I also had a food bolus which took 24 hours before I had it operated on in Adelaide, same doctors as above didn’t take me seriously for several hours in local country hospital, my husband saved me and took me in car to Adelaide, so yes I now have anxiety!!!

[Robynne]

You are also brave and if you can do it I can surely do this. I’ve always believed that 2.5mg was so little as that is what the doctor said , he said last year “ you can’t get a smaller dose than that “. Well it’s got a hold of me.

 

[Robynne]

Yes it’s periciazine (neaulactil )

[ChessieCat]

14 minutes ago, Robynne said:

You are also brave

 

Thank you.  But I wouldn't have been able to achieve what I did without the SA community.  There are many other incredible people here who have had to deal with a lot more than I have had to.  Fortunately my suffering was only short term and once I got on track after joining SA things went reasonably well.

 

36 minutes ago, Robynne said:

I will read the info on refining the tablet with alcohol looks interesting but I’m worried about making my own medicine. I’ll see what this lovely new doctor comes up with

 

I can understand your concern, but making a liquid from a tablet is actually very easy when you are taught how to do it.  Many members of SA have had to learn how to do things that they never expected or wanted to do.  I'm amazed at how patient some of them are counting tiny beads, or weighing minute amounts of powder.  I was fortunate to be able to get my Pristiq compounded and then used the powder in them to make a liquid once I got below 0.125mg which was the smallest capsule that the compounder could make at a reasonable price.

 

I'm hoping that this doctor is really helpful.  You could tell her about the tablet being soluble in alcohol and even provide her with a printout of that information.  She may be able to give you more confident.  Making your own liquid from a tablet is actually more accurate than getting tablets compounded due to the process.  You can search for YT videos on how it is done.  All they do is crush the tablets and add filler and then mix it and then divide it between the capsules.  They work out how much of the filler then need to fill each capsule, but if you watch the video you will see that there is no guarantee that the tiny amount of crushed tablet is going to be evenly dispersed throughout the filler.  For me I just had to not worry about that, because I think me weighing powder would have been less accurate.

 

And staff and members here can help you work out what you need and how to do it.  Once you are given the amounts of the alcohol and water to use we can work out how much of the liquid you take to get the dose you need.

 

Basically you add the tablet to a certain amount of liquid (in your case you would dissolve first in alcohol and then add the water) and you work out how much dose each 1mL of liquid contains.  The good thing with making your own liquid is that you can increase the amount of liquid and measure really small doses.  There was one time near the end of my taper that I put the capsule contents in 2 litres of was (4 pints) but I didn't need to use it all so I made it up and only kept enough for the doses that I needed and through at the rest.  The reason I needed to use 2 litres of water was so I could get the dose I needed to take.

 

 

 

[Robynne]

I was feeling ok now I’ve slipped Again !! I truly feel like giving up, I’m taking 1.87 mg how could this be making me this sick. I can get compounded pharmacy capsules 1 mg and 0.25mg. I am slowly getting more confident reading the tablets into liquid info it takes me some time to absorb information particularly when I feel crap. I’m sooo up and down. 

[ChessieCat]

Hang in there.  I know it is tough bu you are doing a great job.  About you take 1/4 tablet now and then another 1/4 tablet just before bed and then do 3 x 1/4 tablets tomorrow at the times I suggested earlier.

 

Yes it can take a bit of time to comprehend new information.  Just take it bit by bit.  It's not urgent.

[ChessieCat]

I'm assuming that you felt reasonable during the early afternoon and that it has only just started getting awful again.

[ChessieCat]

15 minutes ago, Robynne said:

I truly feel like giving up, I’m taking 1.87 mg how could this be making me this sick.

 

At this time it is possibly not the drug side effects that are causing the issues but the interdose withdrawal.  It's important to think in factual terms which helps you to stay the course and get through the hard part.

[ChessieCat]

I'm thinking that the dose should be starting to even out a bit now (but it's only been a couple of days) so hopefully tomorrow will be even better and then the next even more better.

 

But I would definitely be taking 3 x a day

[ChessieCat]

Don't try and battle through until the night dose.  The idea of taking 1/4 now and 1/4 later is to get you through the night.

[ChessieCat]

And don't forget only 1/4 in the morning.

[Robynne]

Oh thanks for your replies I ended up laying down !! Didn’t see them for a while. Started feeling yuk about 2 pm it’s easing a bit now I’ll start taking the 3 x 1/4  as from 8 pm. Gee the tablet is only a fragment though I worry I’m getting enough. I better sleep tonight ! I’m sure that will help me. I’ve always been a tough farmers wife this is throwing me. 

[ChessieCat]

16 minutes ago, Robynne said:

I’ve always been a tough farmers wife this is throwing me. 

 

Please don't feel bad.  It is the drug that is causing the issues.  That is why I told you of my experience to help you to understand how powerful these drugs are and what issues they can cause and that it isn't in your head.

 

If you desperately need to take 1/2 a sleeping pill tonight, then you need to do it.  Hopefully tomorrow night you won't.

 

Just keep reminding yourself that you are part way through the process of getting this sorted out and take one hour or even one moment at a time if you need to.  Don't worry about how you are going to get off.  Just get through the now.

 

And remember to only take 1/4 not 1/2 tablet tomorrow morning 6am, 1/4 at 1pm and 1/4 at 8pm.  Set a reminder if you need to.  It's important to be consistent.

[Robynne]

You are so caring ! Thankyou I’ve just been looking through more on this site, I’m not good navigating some sites but  I saw your tapering schedule over 6 years I admire you that you got there! Do you feel better than when you were on your drugs because I wonder all the time what I’m doing? As while on the drug I felt normal and only had occasional anxiety but I just keep 

getting told by various doctors to get off it as it’s not a good  drug ,There’s better ones Robynne.  Grrr 

[Robynne]

I have a confession I’ve been having a glass of wine late afternoons as I’v always  had one with my husband. That is the only time I feel better fully and nausea leaves me  and have a normal me feeling . I had  my normal one yesterday then I had bought some new tea which had combination of lots herbs and stated was good for sleep. I drank it went to bed early at 7.30 decided to take a sleeping pill as I was exhausted. Well by 8.30 had terrible anxiety, heart racing, diarrhoea. I had Panadol which i think calmed me. Came close to taking full periciazine but relented. Slept 12 to 3.30 am. Took 1/4 tab at 5.30a.m Been reading SA website, I can see I have all symptoms of anxiety being nausea, insomnia , diarrhoea , dread feeling,now I’m  confused if this is the real me since I’ve reduced  or is this because of withdrawal. I definitely didnit feel this bad while on the drug ever. I feel like when I’m good I’m just waiting for the bad stuff to start then when I’m bad I’m waiting and waiting to feel better. I’m very confused. Well the plus is I’m still not taking nausea drug or nexium and I’ve kept to the tablet plan and only had 1/4 this morning. My biggest issue really is the insomnia. Don’t want to take the sleeping pill and feel huge guilt over that also  now I’m never drinking that  tea again. My daughter who is a social worker has told me I should never been told to go cold turkey 7 weeks ago and switch to another drug and I’m still suffering from that. 🤷🏼‍♀️Im just a case 

[Robynne]

Feeling worse by the minute I’ve been gagging and dry wrenching ! Now I feel like it’s hard to swallow my anxiety is getting worse, just sitting quietly now drinking a normal black tea sucking butter menthols as well, mind you I was even worried they might harm me. 

[Robynne]

Just taken another 1/4 

[Robynne]

Ok I really think it’s an hour or so after I take the peri that I feel sick and extremely anxious I think this drug is killing me 

[ChessieCat]

alcohol-and-beer

 

 

[Robynne]

Yep think I already new about the alcohol probably why I confessed. I’ve had phone consult with doctor and I’m going to leave the for a while, Thankyou for your ongoing support I’ll keep you posted.

[ChessieCat]

Just wanted to let you know that I am not able to continue supporting you at this time.  I'm still not completely well and after returning to work yesterday I realised how tired and run down I am.  I haven't been 100% since the beginning of June, and it is now affecting my mental wellbeing.

 

I suggest that you read back through your topic.  When we are overwhelmed and unwell we don't always comprehend the information that is provided.

[Robynne]

Oh CC , you have been wonderful to me I only wish you wellness too ! Take care of yourself I’m going to continue with my new Doctor as she is all over this . Thanking you again. You will get on top of things I can tell how brave you are .

[ChessieCat]

Hi Robynne,

 

I've been wondering how you are.  Is the new doctor working out okay?

 

Because there is not much experience here at SA about getting off periciazine it would be truly appreciated if you can update occasionally so that we can document things for the benefit of future members needing to stop this drug.

 

Thank you.

[Robynne]

To be perfectly honest I’m not travelling  very well. I’ve gone back on 2.5 mg periciazine trying to feel better. I went off nexium which was very big mistake as my nausea was terrible as they were stopping the reflux in my tummy. Before that the doctor told me to resume taking maxillon to stop the nausea but I had 2 almighty attacks where I had blurred vision,  couldn’t swallow and total panic. Lucky my daughter was here as she recognised these symptoms as the same as she had experienced when she took them whilst pregnant, so no more anti nausea meds. I’m presently waiting to go to psychiatrist on Friday as I’m too hard for the GPs, I feel in permanent state of anxiety. Love to report I’m great but that’s not the case😧