Kaceyjay: Vraylar Withdrawal - Considering Reinstatement

[Kaceyjay]

Hi there all,

 

I'm new to the forum, but not to the Mad Movement or the Psych Survivor Community. I'm a writer and artist. But I'm currently struggling so hard with a Vraylar taper that I thought I did carefully enough, but apparently not. I'm pretty crippled by exhaustion at the moment. Considering a reinstatement of it at a lower dose but not too sure what that dose would be because vrayar has a confusing half life. When I stopped it all together, I was taking 1.5mg every 4 days. So much for that idea. lol. funny not funny. You'd think such a small dose won't destroy you, but it has. I've heard the last bit is the hardest but somehow I didn't believe it, I had a pretty easy time with the others so I was naive I guess.

 

Can anyone help me with the math here? I guess reinstating at half of the last dose would be safe enough. But absolutely no idea how to calculate that. I found a compounding pharmacy that can help so once I have that dose, I'll be set to try the taper again. God I hope someone can help.

 

I don't know how to do signatures yet but here's my history:

4 hospitalizations, bipolar 1 diagnosis at 21

meds: god knows all of them through the years but most recently: Small dose of lithium, Lexapro, Lamictal and was on high dose of latuda before coming off that onto vraylar. I've weaned off everything. Vraylar was the last one.

[SkyBlue]

Hi Kacey and welcome to SA.

 

Maybe not naive, but certainly it boggles the mind how powerful these drugs are. 

 

When did you stop taking the Vrylar completely? 

 

You mentioned debilitating exhaustion after stopping the Vrylar.

Do you have other symptoms? Keeping track of them and any patterns may be useful as we look at reinstatement.

 

Here's instructions on how to create a signature: 

https://www.survivingantidepressants.org/topic/24613-how-to-list-drug-history-in-signature/

Most recent drug changes are the most important; approximate dates are fine.

A brief history of the other meds may be helpful also, if possible.

 

You mentioned reinstating a small dose; here is general info on that (below),

and I'll speak w/the other moderators to see if one of them can chime in here (this will be your thread to post updates, changes, ask questions etc). 

Again, welcome. You are not alone. Glad you are here.

 

[Kaceyjay]

Hey Sky Blue! Thanks! We have a woman's soccer team out here named sky blue.

 

I stopped taking the Vraylar on April 29th. The Exhaustion started about two weeks ago, then last week it graduated to include nausea and bit of dizziness. It's been a little more than a week of that. Really incapacitating.

 

I took half of the 1.5 last night. divided the powder in the capsule and licked it off my finger. My plan was to take that every 4 days, since my last dose I stoped on was taking 1.5 every four days. I have not felt any better since taking it.

 

I have an appointment with the psychiatrist on 6/7, and my primary won't do anything until I talk to her, so she was basically like, so sorry hon but your on your own for 11 days. Got a bunch of blood tests including auto immune markers and they came back ok. I have a history of some autoimmune stuff (Hashimotos, Antiphospholipid syndrome), but everything came back good.

 

My days are pretty much very low functioning, sleeping or laying down and not being able to sleep but not being able to get up and do anything. But there are windows of being able to do little things. like right now, being able to type this. They seem to be more in the evening generally.

 

I had bad akethesia a few nights ago. but that has subsided and hasn't happened since.

 

Hope this information is helpful. I feel like this is really just going to be a waiting game. Any suggestions on coping stuff, particularly when you live alone would be so much appreciated. Thanks so much all.

 

Karin

[SkyBlue]

2 hours ago, Kaceyjay said:

Hey Sky Blue! Thanks! We have a woman's soccer team out here named sky blue.

 

Hope this information is helpful. I feel like this is really just going to be a waiting game. Any suggestions on coping stuff, particularly when you live alone would be so much appreciated. Thanks so much all.

 

Karin

 

Hi Karin, You're very welcome.

 

It does seem like it might be a waiting game, now that you've reinstated a small amount. 

 

I think it sounds like a good sign that the akathisia hasn't returned. I've experienced that and it's just awful.

 

There is plenty of information here about coping skills, which hopefully will be useful as you ride out the reinstatement.

That section is here: https://www.survivingantidepressants.org/forum/8-symptoms-and-self-care/

 

Every person is unique, of course, but overall what seems to be most helpful is

resting and calming the central nervous system, which is thrown into chaos during withdrawal. 

 

Please keep letting us know how you're doing.

[Shep]

Hi, Kaceyjay, welcome to SA from me, as well. 

 

This is from your signature:

 

December 2019 - April 28, 2021 - Vraylar (1.5 every other day)

 

And I see you reinstated on May 27. 

 

On 5/28/2021 at 4:25 PM, Kaceyjay said:

I took half of the 1.5 last night. divided the powder in the capsule and licked it off my finger. My plan was to take that every 4 days, since my last dose I stoped on was taking 1.5 every four days. I have not felt any better since taking it.

 

Please do not skip doses. It's important to take the same amount of the drug every day at the same time of the day. Consistency will help your nervous system adjust to the drug, especially during a reinstatement. 

 

Please read the first post in this thread, as it explains why we generally recommend a lower dose for reinstating than when you first went off the drug.

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

Because Vraylar is a newer drug, we don't have a lot of information on withdrawing from it at this time. However, I'm linking to some information about this drug:

 

Drugs.com - Vraylar

 

The lowest dose this drug comes in is 1.5 mg, which is what you currently reinstated. 

 

This drug has a very long half-life of 2–5 days (2–3 wks for active metabolite, desmethylcariprazine) (source - Wiki - Cariprazine (Vraylar). 

 

If you are a slow metabolizer, taking 5 days for the half-life, you would have about 1 mg still in your system after 4 days (since you were taking it every 4 days).

 

If you are a fast metabolizer, taking 2 days for the half-life, you would have about about .375 mg still in your system after 4 days. 

 

I used this online calculator to figure these out - Drug Half-Life Calculator. 

 

However, the active metabolite of up to 3 weeks half-life means that you still had 50% of this drug in your system well into the middle of May. And the drug builds up in your system over time. So you likely had more in your system than you realized. 

 

You may want to target 0.50 mg as a daily reinstatement dose. This is because it's been about a month since you came off, so your nervous system may be hyper-sensitive. It's always best to start at a lower dose because you can always increase. It takes about 4 days for your nervous system to register a change and it can take several weeks for your system to adjust to the change. 

 

On 5/27/2021 at 11:40 AM, Kaceyjay said:

I found a compounding pharmacy that can help so once I have that dose, I'll be set to try the taper again.

 

This is excellent. I'm glad you're already set with a compounder. For more on this type of tapering, please see:

 

Compounding pharmacies (US, UK, and elsewhere)

 

 

Questions:

• Are you taking any other drug or any supplements? If so, please list the names and doses. 
• What dose of Vraylar did you start at back in December 2019? When did you first start skipping days in between doses or did you always take this drug that way? 
• What time of day do you take Vraylar? Does it make you feel sedated? 

The goal going forward is to find a safe and comfortable reinstatement dose that you take daily until you stabilize. And then we can help you set up a safe taper for coming off. 

 

Please post your thoughts and let us know how you're doing. 

 

[Kaceyjay]

Hi Shep!

 

Thank you so much for all of this great information! 

 

I'm not positive, but I think you were basing the calculations on a reinstatement of 1.5 every four days? But I took half of that to reinstate: 0.75. I may have misunderstood.

 

I'm doing quite a bit better exhaustion, nausea and dizziness wise. But from all the inactivity over the last two weeks, I threw my back out and ended up in the ER on Saturday. ugh. But, that is turning out better than I expected. 

 

Answers to your questions:

• I am taking supplements:
  • Multivitamin
  • Magnesium Oxalate
  • L-Methyl Folate
  • NAC
  • Turmeric
  • Fishoil
  • Vitamin D and C
  • Zinc
  • Inositol
  • I take thyroid medicine and baby aspirin every day (I have Hashimotos).
• The dose I started at was 1.5 every day, but we went to every other day shortly after and I've been on that for most of the year.
• I take the dose at night and no it is not too bad sedation wise.

I was aware that skipping doses was not recommended in most cases, but did think vraylar was different because of the half life. But I'm on board with doing it daily, just seems like a better set up. So, if the calculations here were based on .75 every four days, I think we're set with a reinstatement dose of .50 every day? I'll wait for confirmation on that.

 

Thanks you so much for the really clear and helpful information here.

 

Karin

 

[Shep]

3 minutes ago, Kaceyjay said:

I'm not positive, but I think you were basing the calculations on a reinstatement of 1.5 every four days? But I took half of that to reinstate: 0.75. I may have misunderstood.

 

3 minutes ago, Kaceyjay said:

I was aware that skipping doses was not recommended in most cases, but did think vraylar was different because of the half life. But I'm on board with doing it daily, just seems like a better set up. So, if the calculations here were based on .75 every four days, I think we're set with a reinstatement dose of .50 every day? I'll wait for confirmation on that.

 

You are correct - that was my mistake. I see you wrote - "I took half of the 1.5 last night," so you're correct that it's 0.75 mg. Sorry about that. 

 

 

6 minutes ago, Kaceyjay said:

The dose I started at was 1.5 every day, but we went to every other day shortly after and I've been on that for most of the year.

 

It's going to be difficult sorting out the best reinstatement dose.  You were on 1.5 mg every 4 days from December 2019 - April 28, 2021, so your nervous system likely adjusted to that amount. But it looks like you've never been on a full dose of this drug, at least not for very long before taking it every other day. 

 

What do you think about 0.25 mg as a way of testing the waters with a reinstatement? That might be best since your history on this drug involves a very low dose (which is a good thing and works to your favor). It also will be a way of letting the drug build up slowly on a lower dose to see how you react. 

 

12 minutes ago, Kaceyjay said:

I am taking supplements:

• Multivitamin
• Magnesium Oxalate
• L-Methyl Folate
• NAC
• Turmeric
• Fishoil
• Vitamin D and C
• Zinc
• Inositol
• I take thyroid medicine and baby aspirin every day (I have Hashimotos).

 

 

 

Please research these supplements by using the search feature of the site or googling "surviving antidepressants.org" + [name of supplement]. That way you can see how others going through withdrawal experienced taking them. 

 

For thyroid information, please see:

 

Thyroid symptoms: hypothyroid, Hashimoto's

 

 

 

[Altostrata]

Hello, @Kaceyjay

 

Stabilizing on a very low dose is a good idea. You may find it easier to take a small amount of Vraylar and taper off it by using a liquid, measuring with an oral syringe.

 

From https://www.caymanchem.com/pdfs/24025.pdf

 

Quote

Cariprazine (hydrochloride) is soluble in organic solvents such as ethanol, DMSO, and dimethyl formamide. The solubility of cariprazine (hydrochloride) in these solvents is approximately 5, 1, and 0.5 mg/ml, respectively. Cariprazine (hydrochloride) is sparingly soluble in aqueous buffers.

 

A compounding pharmacy can make this liquid for you. Some people might use vodka or buy DMSO to make their own liquids. See 

 

How to Make a Liquid from Tablets or Capsules

 

Using an oral syringe and other tapering techniques
 

[Kaceyjay]

Thank you so much both of you for this. A liquid sounds like a good idea. I will look into this for instating the daily dose. I'm still doing the .75 every four days. A little hesitant to change anything until I talk to psychiatrist. Still struggling exhaustion and nausea wise. But hanging in. I have a psychiatrist appointment next Tuesday, she *may* be open to helping me do this. I'm hoping. We shall see. I will keep you up to date. 

 

Again, thank you so much for all this information. So wonderful to have this resource seeing as most docs and psychiatrists have no clue.

 

Oh, I found that right after my back went out and they gave me the anti inflammatories for the pain, I felt a lot better exhaustion wise. Then when these ran out the exhaustion came right back full force. This seems to make some sort of sense since antipsychotic withdrawals cause an immune response (flu symptoms). Wondering if that might be something for me (or even others) to pursue as helpful for exhaustion. I'm going to look into it.

 

 

[Kaceyjay]

Alright, spoke to my psychiatrist. She basically gave me the go ahead to do what I was doing and try the daily dose with a solvent and a syringe. So, looks like for vraylar I can get some DMSO and a syringe. Thanks for that link for the liquid tapers. I think I will ask a pharmacist (probably a compounding pharmacist) to calculate a daily dose out of the .75 every four days. I have no idea how to calculate that. But hopefully they can give me some number.

I also know that vraylar is only shelf stable in liquid for 14 days. So I'll just remix the solution every two weeks or so.

OK. things are looking up. My back is better and the exhaustion is resolving a bit with the reinstatement. I've had two pretty good days. 

 

Karin

[brassmonkey]

You might look into using ethanol instead of DMSO. Vraylar has a much better solubility rate with ethanol, vodka, (5mg/mL ethanol, 0.5mg/mL DMSO), it's also easier to get ahold of. This solution can then be diluted with water if necessary. According to the manufacturer a solution using DMSO or ethanol is good for three or four days, but once you add water it is only good for one.

 

If you are taking .75mg every four days your daily dose would be .75/4 = .19mg.  Because of the very long half life (21 days) there should not be a problem with splitting up the dose. There may be an uptick in symptoms but it should only last a short time before stabilizing.

[Kaceyjay]

Thank you so much. I didn’t realize it was that easy lol. Also on the ethonal, I’m a bit confused on what that is? It’s alcohol? Would you mind pointing me to the product? I’m my mind I keep thinking rubbing alcohol or gasoline and wondering why you would ingest it lol. I know I just don’t know what I’m talking about. So if someone could send me a link to a product online?

 

thank you again

 

karin

[Kaceyjay]

Hi all,

 

I've had a rough Vraylar withdrawal for the last month and a half. Starting with severe fatigue, dizziness and nausea, that turned into a back spasm that landed me in the ER, then a really hard episode of what I thought was Vertigo (the doctor said it wasn't vertigo but rather disequilibrium). I couldn't walk without help for about a day and the feeling of a lack of balance has not been totally restored 5 days later now. I feel just internally like I'm on a boat, or wobbly all the time.

 

I'm concerned about Central Nervous System stuff. I've seen a neurologist who actually suspected the Vraylar withdrawal. I wonder about some kind of parkinsonian symptom, too. I also surprised myself with a weird lack of coordination during that part of the exam. 

 

Does anyone else have experience with or information about balance problems after long term use and withdrawal from neuroleptics?

 

Thanks so much,

 

Karin

[Brucie]

How is your balance now??

 

I quit CT 3 over months ago. At the 6 week mark I lost my balance. I’m constantly feeling boatiness, disequilibrium, and rocking. Have not improved nor worsened in 6 weeks. No windows yet. Same triggers but now my main symptom is this swaying sensation. (Age 25)

[Altostrata]

Hello, @Kaceyjay This entire site is about withdrawal effects from psychiatric drugs such as Vraylar.

 

If the neurologist doesn't know about withdrawal syndromes, that is a doctor that's far behind the times.

 

See 

 

What is withdrawal syndrome?

 

Dysautonomia (autonomic dysregulation)

 

Framer, A. (2021). What I have learnt from helping thousands of people to taper off antidepressants and other psychotropic medications. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125321991274

 

Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573