How do I taper .50mg pram?: I am... - Restless Legs Syn...

Restless Legs Syndrome

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How do I taper .50mg pram?

loloball2 profile image
24 Replies

I am currently on 3 very sedating drugs . Klonopin, Mirtazapine and Pramipexole. I have been on Pram for about 1 yr and feel I am only experiencing the side effects from it. I was put on it for depression and mild rls. I don’t worry about my sleep as the other 2 drugs really knock me out when I take them at bedtime . I just hate the daytime sedation from taking these drugs. I believe Pram is the main cause of my daily nausea and lack of appetite.

I guess my worry is lowing my dopamine as I taper and becoming more depressed. I pray this is not the case.

So I am seeking guidance in properly Tapering at a safe pace. Is dropping 0.125mg every 2 weeks too much too fast? Thankfully I have not really suffered from RLS but do realize that could kick in while tapering.

Also has anyone use supplements to help with the drop in dopamine? Like l tyrosine or any supplements that increase dopamine?

Thanks so much!

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Madlegs1 profile image
Madlegs1

That sounds reasonable. It depends on what your starting dose is.

Let your body tell you how quickly to go down. Take holidays whenever necessary.

loloball2 profile image
loloball2 in reply to Madlegs1

I am taking .50mg Pram for 1 yr. Is that considered a hard dose to get off of? I am most concerned about my depression getting worse by lowering the dopamine but is it really that big of a dose? It was taken off label for depression but never helped. I think I am going to take smaller cuts as I taper.

SueJohnson profile image
SueJohnson

Mirtazapine makes RLS worse for most so you would be wise to get off it. I am surprised you were put on pramipexole for depression as Mirtazapine is for depression and pramipexole is for RLS. Do you need an antidepressant? If so wellbutrin and trazodone are safe,

I gave you advice 7 months ago. To find it go to you profile and you will see you posts there. Good luck. Just take it as slow as you need.

loloball2 profile image
loloball2 in reply to SueJohnson

Sue, I just joined last night so I don’t have any messages from you in the past. From other peoples posts I think you say to cut the .125mg in half about every 2 weeks? So dropping a whole .125mg like I did to start was too much. I am not sure if I should go back and add half of it back or stay. I am really out of it and have no energy whatsoever. My depression is worse but I don’t want to add any more meds. Mirt has really messed me up. I have taken Wellbutrin in the past but it made me too anxious. I can’t hardly get out of bed. I am very nauseous all day and have no appetite. I am in a deep brain fog. Nothing interests me and I feel I feel no pleasure.. Simple chores and grooming are nearly impossible.Very scary and overwhelming. For whatever reason, later at night I feel better, my appetite comes back but then I eat too late and go to bed late.A lot of this was happening before starting to taper pram and I felt possibly it was some of the side effects of being on it. I was tapering mirt but that became too difficult I had to stop for now. That’s when my dr suggested I get off the pram.

SueJohnson profile image
SueJohnson in reply to loloball2

I'm sorry. I must have confused you with someone with a similar name. I would go back up to the .50 dose and let your symptoms settle. Then to come off pramipexole, yes reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a...

For nausea I suggest zofran. For your tiredness I suggest adderal or ritalin, but take them in the morning so they wear off at night. All of these you will only need temporarily, Once you are off Mirtazapine you might want to try trazodone which helps with anxiety. The clonazepam has a long half life of 40 hours so makes you tired the next day. Once you wean off that you might want to try lunesta which is what I use.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

loloball2 profile image
loloball2 in reply to SueJohnson

Thanks Sue for all the information.

After being put on and off so many psych meds that don’t help and some (mirtazapine) being hell to get off of let alone what getting off the benzo klonopin will be like. I am not a fan of psych meds. have years ahead of me before I am able to slow taper off these drugs.

Like I said I was put on Pram while in the hospital due to a side effect another med was causing me to have some RLS and tremors. I am no longer on the drug that causes those side effects and I do not struggle thankfully from RLS as we speak. The dr kept me on Pram for off label use for depression as it increases dopamine but after a year and so many side effects of the Pram, Mirt and Klonopin my dr decided to have me stop tapering mirt and begin to taper Pram instead as it’s likely to be much faster to get off of than Mirtazapine will be.

So we were hoping I would eliminate some of my side effects like the nausea, lack of appetite, strong sedation from being on 3 sedating drugs at once. So I have been very ill, including very low mood and energy to the point I hardly can function. As I dropped .025 of my .50mg last week I feel like I am worse and by worse I mean depression and fatigue, brain fog wise. RLS has not been an issue. I worry about DAWS and the decrease in dopamine. I tend to over worry so I may be my worst enemy as I taper. Is .50mg an easier dose to taper off. I have been on it for 1 yr.? My dr thinks I could be of in a month but he knows I won’t go that fast.

You suggested going back up to .50mg and then start to taper at a 1/2 of .125mg every 2 weeks instead of the full .125mg ?

After being on so many psych meds that have been of no help I am working with a naturopathic dr to try to get to the root cause. My dr won’t put me on gabapentin while being on Klonopin and he isn’t going to let me do Ritalin and or adderal for energy. He is all for me getting off these meds as is my Naturopathic dr is but both of them don’t understand how hard this tapering process is. My Naturopathic dr is working on natural supplements for increasing dopamine but that isn’t an easy process as some things increase anxiety or do nothing at all.

If I didn’t start to feel a bit better by night time I wouldn’t know what I would do. It is the most scary and depressing experience I have ever been through.

I guess I can see if going back to .50mg helps but I hate to have to start all over again.

SueJohnson profile image
SueJohnson

P.S. Welcome to the forum. You will find lots of help, support and understanding here.

Merny5 profile image
Merny5

welcome lololball2! You will get great advice here. I tapered off of a very high dose and did experience DAWS. The first time I quit, I did it in one month, 9 mg to 0!!! Very, very bad decision!! The depression and anxiety was beyond description. Needless to say, I stated taking it again but at half the dose. There were times during this period that I needed to up the dose because the psychological symptoms were so severe. So I guess what I’m saying is the same as Maglegs, let your body tell you and don’t try to go with a schedule. Just go slowly.

Good luck and stay in touch with this fabulous group!

loloball2 profile image
loloball2 in reply to Merny5

Thank you for reaching out! I feel so scared and alone in this journey. I have been very sick even before tapering this drug so it’s hard to know what’s causing what. I am on 3 psych meds that sedate me and are not helping depression at all. I am wanting to get off all of them but of course need to go one at a time. I am on .50mg of Pram but plan to drop 1/2 of a .125mg at a time. How much and how fast did you taper at a time once you started a second time? It helps to hear others experience with their taper. Thanks again.

Merny5 profile image
Merny5

I was using the Neupro patch so my doses were slightly different. My second reduction began at 4 mg. I believe I cut 1/4 of the patch and stayed on that for about 4-7 weeks . It depended on how I felt. If I started to develop too much anxiety and depression. ( excessive sweating and anger were another problem) I would either tough it out or go back to the previous dose. You are on a much lower dose and not for a long period of time so it should be much easier for you🤞🏼🤞🏼🤞🏼

tom137 profile image
tom137

I can only speak to the use of Klonopin. I was on a very low dose for RLS. WHEN I changed doctors I was told to taper off of it because besides sedation, it is habit forming and can cause permanent memory loss and other problems. Tapering had some side effects but I feel much better now that I am off of it. I also changed to a whole food plant based diet. My health quickly improved and slowly RLS disappeared.

loloball2 profile image
loloball2 in reply to tom137

Thanks for your reply! What dose of Klonopin were you on? Can I ask how did you taper?. My dr said I need to get off Pram and mirtazapine first and Klonopin will be my last taper. I take a total of .75mg. .50mg at 1p and .25 at bedtime.

Glad to hear you managed the taper okay and are doing much better! I have heard it can be a very hard one to get off of!

tom137 profile image
tom137

I was taking 0.5 mg at bedtime so I could sleep. That was 10 years ago. I went to 3/4 of a pill for two weeks, then 1/2 for two weeks, 1/4, etc. I also started gabapentin at 100 mg for a week, then 200, etc., until I got relief and sleep at 600. I was on Gaba for several years, then weaned off. I take no medications whatsoever now at age 87.

fishinphil1946 profile image
fishinphil1946

I started at 2.0mg pramipexole and reduced by 0.125 per 2 weeks for 32 weeks and it went well. It was difficult to cut the 0.50 pill in 4ths, but it worked. When you hit 0, it will take a while to clear all of it. You may have some withdrawal. I was also taking 1500mg gabapentin which may have reduced the affects during and after the reduction.

Best wishes

tagaxel profile image
tagaxel

The safest way to get off pramipexole is by micro tapering. You will almost certainly go into DAWS by trying to take a 25% cut. The way to micro taper is you have your physician write an extra script to a compounding pharmacist. The compounding pharmacist can render the solid pill into a liquid.

You would give the pharmacist 30 of the 0.25 mg tablets. The compounding pharmacist would render the 0.25 mg, pramipexole tablets into a 15 mL suspension.

Here’s the way your physician should write the prescription:

0.25mg/15mL

Dispense: 450mL for the month

You'll need 30 of the 0.25mg tablets to take to the compounder.

Ingest 0.15mL less per day (that is a loss of 0.075mg per month or 10% lost per month). You'll need a 15 mL oral syringe and a 1mL oral syringe for this. And you'll need an adapter cap inside of your bottle of compounded liquid that fits the 1mL syringe as well as a 10mL oral syringe.

So, when you take your dose you will take one solid 0.25 mg tablet along with the liquid. On the first night that means you would take 0.25 mg of solid pramipexole along with 14.85 mL of the liquid.

When you get down to 0.25 mg you should change the formula. I will do the math for you when you get there.

loloball2 profile image
loloball2 in reply to tagaxel

Thank you so much for reaching out to me.

I am really at an all time low and while I was very bad before starting this taper I am basically non functional now. I have been trying to stabilize from taking to big of a drop of the Mirtazapine I was trying to taper this past fall. It is a very difficult drug to get off of as well and I will be doing a liquid taper when I start to taper it once off of Pram. I am also on Klonopin as well.

I am all for doing the micro dose for Pram but I was hoping I could do it a bit faster as it is important to get off of the mirtazapine as I have very bad side effects from it. My dr had me switch to tapering Pram as he felt it wasn’t one I shouldn’t be on and it wasn’t helping my depression. But I am much worse since taking a 25% cut almost 2 weeks ago. I did go back up just a bit yesterday but didn’t feel any better. I am wondering if I should go back up to .50mg and start over hoping I feel some better?

So you think 10% is as fast as I can go to avoid big problems? Seems like it will take forever to get off of it . I am so depressed, very weak and have horrible nausea and can’t hardly eat due to no appetite . I had all these symptoms before starting to taper Pram but they are very much worse. I don’t feel any joy or interest in anything. It’s a very overwhelming scary feeling and I am desperate. It takes everything in me to even write the message to you. We thought Pram was causing the nausea but it’s worse since lowering dose.

I am going to have to see if my dr will be willing to do the script for the compounding pharmacy. He thinks I am being extra cautious by doing the 25% cut every few weeks. I may need you to write out exactly what to ask him to do to write the script. What you already did write, was that for .50mg dose but just putting .25mg into liquid while I take .25mg pill? You said I will need a 1ml and a 15ml syringe but then also said a 10ml. Did you mean just 1ml and 10ml? And the adapter cap, is that something the pharmacy should give me or how do I get that? If my dr won’t write the script is it possible to make my own liquid by crushing and dissolving the pill? Many people do mirtazapine to liquid on their own and have a whole protocol how to do it.

I guess I should probably go back up to .50mg to hopefully stabilize right now?

Thank you so much for taking the time to help me as I am absolutely beside myself and so afraid I am going to end up back in the hospital like I was last year . That was a very scary situation and all they did was put me on many more meds , Pram being one of them.

Maybe we could try to chat personally if that’s possible. I am willing to share my email if needed.

Laurie

tagaxel profile image
tagaxel in reply to loloball2

First of all, pramipexole is a much more dangerous neurotoxin than Klonopin. Getting off Klonopin is relatively straightforward. There is a protocol (the Ashton protocol) that allows you to switch to Valium (diazepam) which is easier to work with and dilutes easier in water than K. (A great deal depends on how long you have been taking benzodiazepines.) You could miss a dose of a benzodiazepine without serious consequences but even missing part of a dose of pramipexole could be dangerous. If you are having withdrawal symptoms (DAWS) you must go back to a dose where you are stable and begin the taper from there.

Actually, the percent reduction is even less than I put in my note because I was using 0.75 mg as your starting dose of pramipexole. Using the formula that I gave you would be reducing by roughly 5.7% in the first month. You could continue at that rate down to 0.25 mg. The last thing you want to do is rush your pramipexole taper because once you go into withdrawal you end up having to go higher in order to stabilize.

Physicians are as shockingly ignorant about pramipexole withdrawal (dopamine agonist withdrawal) as they were about benzodiazepine withdrawal 20 years ago. If your physician will not write you a script to a compounding pharmacist to help you get off this neurotoxin, find another physician. That’s what I ended up having to do.

Here’s exactly how the prescription should read:

0.25mg/15mL

Dispense: 450mL for the month

(You'll need 30 of the 0.25mg tablets to take to the compounder)

I would be happy to share with you personally through email or telephone.

loloball2 profile image
loloball2 in reply to tagaxel

Ok I thank you so much! I still have many questions . In the state I am in it is hard to take all this in but I really want to do it this way hoping my dr will agree.

My email is loloball2@hotmail.com.

So am I would be dropping 0.15ml every night? Does that mean I take a .25mg pill and 14.85ml liquid each night? Or am I dropping .15ml from that starting dose of 14.85ml each night? Sorry it’s so confusing to me.

I will need to have my dr write a script for .25mg pills too as I only have .50mg unless I cut the pill in half.

I am confused on what syringes I will need as well.

Do you think I should only do the 5.7% drop to start? Seems so slow but if it’s the safest I will do it.

Do you know anything about the other option in slowly reducing by getting a jewelry scale and shave off a certain amount every 2 or 3 weeks?

I will go back up to my normal .50mg tonight. I hope it makes me feel better. Like I said , I had been tapering mirtazapine so I already was having withdrawal issues from that. It has horrible side effects. Plus I have been on and off several drugs in just this past year and nothing has helped my depression.

Do you know what the normal DAW symptoms are? I was not taking the drug for RLS so I don’t have much of an issue there but as I have tapered so far I am so sick like I have the flu with worse nausea and no appetite, very deep dark depressed thoughts, fatigue and weakness to the point I lay on the couch most of the day. I would not even get out of bed I am so depressed but I force myself or I am much worse. Everything is a big fog and I am pretty sedated especially in the morning. I am very emotional especially at night and cry a lot. I do usually reach a calm late at night but during the day I am absolutely miserable.

This can’t all be from just withdrawing Pram but it has gotten a lot worse since I have cut my dose 2 weeks ago.

I am in St. Louis Mo, not sure where you are? Email when you can and we may be could set up a time some evening to make a call if needed. I really appreciate this help so much.

Laurie

SueJohnson profile image
SueJohnson in reply to loloball2

There is another possibility for coming off more slowly. You can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. I may have suggested this to you elsewhere so forgive me if I am repeating myself.

loloball2 profile image
loloball2 in reply to SueJohnson

Do you know approximately how much I would shave off? I guess as long as it’s not more than what half of a .125mg dose would be.

I went back up to .50mg original dose last night and I have had horrible side effects today. Very sedated, more depressed and very emotional. and unstable state of mind,Nausea has been horrible. I have had all these symptoms lately but much worse today. I was expecting to feel better but my body is probably reacting to the up and down in the dose. Do you think I should try to stabilize for about a week or so before restarting the slower taper?

SueJohnson profile image
SueJohnson in reply to loloball2

To answer your other question. The symptoms of DAWS can include apathy, anxiety, agitation, panic attacks, depression, fatigue, insomnia, nausea, vomiting, agoraphobia (fear of...), agitation, irritability, suicidal ideation, fatigue, orthostatic hypotension, diaphoresis (sweating), panic attacks. generalized pain, and drug cravings. dizziness. One person mentioned nightmares.2 mentioned crying, 1 mood swings and another heart palpitations. BUT these are all just possibilities. You may have one or several of them.

If you were taking more than .50 you are already suffering from some of these - depression, fatigue and nausea. In that case I would go back up to a dose where you don't have these so you can come down more slowly.

How much do you shave? Start with the smallest amount and see how it goes. If it goes well, then increase it the next time.

Birdland profile image
Birdland

I am very sorry you are going through such depression. I know what that is like. I had been on Prozac for 25 years. From what you say, RLS is not your issue. One of the most difficult parts of tapering off dopamine agonists is the increased RSL symptoms. So I'm glad you hopefully won't have to deal with that. But, as people have stated, depression from DAWS is very real. I started taking Ropinirole (also a dopamine agonist) 18 years ago. Then when my RLS got so much worse due to augmentation I had to taper off of it. Before I did so, I tapered off Prozac because I learned SSRI's trigger RLS. My depression surprisingly was ok post Prozac, I believe due the extremely high dose of Ropinirole I was taking, flooding my brain with dopamine. As I tapered off Ropinirole I experienced what I called a very deep sorrow even though I tapered very slowly. By the time I was off completely I was in, as you say, a very dark place. Begging my loved ones to give me permission to take my life. And getting angry when they said no. I tried taking Wellbutrin but the anxiety side effect was impossible to bare. I'm concerned about you tapering Mirtazapine and Pramipexole at the same time. I know nothing about Mirtazapine. Have you tried an SSRI? Anyway, I will tell you how my depression eased although I'm pretty sure you won't choose this because it is an illegal drug. I went to a doctor that does Ketamine treatments (suggested by my GP) although I chose not to go this route. This doctor actually suggested I micro dose psilocybin mushrooms although he couldn't prescribe them because of the illegal issue. I live in California where everything is available. I acquired some and took a very small dose a couple times a week. And I do mean small dose! Not enough to feel any effect at all!! The depression started lifting after just a couple doses. Saved my life. My GP gave me his blessing and said this treatment will be legal before long. Just wanted to share my story. I hope you find a way out of your dark place. It's a very difficult place to be.

loloball2 profile image
loloball2 in reply to Birdland

Thank you for sharing with me! I feel so alone and have been nearly house bound since last summer dealing with my depression and tapering issue I have had with mirtazapine. I am no longer tapering mirtazapine as of 3 mths ago. It became just too hard. So now the dr wants me to taper Pramipexole but his taper idea was way too fast. I am going to go very slow like less than 10% a month using compounded liquid if my dr will write me the script. He thinks I could be off of it in 2 weeks:(

How slow did you taper your DA?

I am working with a Naturopathic dr and she has me on a few supplements that help the body increase dopamine. I believe I started my taper at too big of a drop and too quickly. I also have many gut issues and we are working on supporting the gut. The gut-brain axis being in balance is very important.

I wish I had the mushrooms available to try but I live in St Louis and no idea where to find any around here. I would be so scared to try them

Birdland profile image
Birdland in reply to loloball2

I'm glad to hear you stopped the Mirtazapine taper. Seems like most doctors don't understand the difficulties in tapering DA's too quickly. I was taking a very high dose of Ropinirole for many of the 16 years I was on it. Four times maximum recommended dose. Of course I didn't know that at the time. I went from 8 mg down to 1.5 mg in 9 months. Then I took a year and a half off while holding steady at 1.5 mg. Then it took me 6 months tapering down to 0. While holding steady at 1.5 mg my depression wasn't terrible. But as I reduced more and got to 0 the depression got very bad. I took it for so long that my brain forgot how to create dopamine on it's own. I then was off the Prozac I took for 25 years and the DA I took for 16 years. My brain didn't know how to cope. RLS sufferers can't take anything that promotes serotonin so I didn't have many options. That's why I resorted to the mushrooms. I understand the problem in acquiring them and your reservations about taking them even if you could.

Good to hear you are working with a doctor to increase your dopamine. Have you heard of the supplement called Lion's Mane mushroom? Supposed to raise dopamine. And yes, I've heard a lot about how many issues start in the gut. Best of luck to you!

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