Hi, I am actually in tears as I write this, I am trying to get off pramipexole, I was taking 4x 0.088 at night. After the worst two months I got it down to 2x0.088 pramipexole. I have not had a full night's sleep since November because of augmentation. The pain in my legs is unbelievable and both my arms and legs are twitching 24 hours a day. My GP gave me 25mg pregablin to help with the pain. Which did nothing, finally after two months got it raised to 75mg. Still no relief. So finally to night I'm ashamed to say I give up I I have gone back to 4 x 0.088 pramipexole. I can already feel the pain subsiding. It's been a few hours and the twitching has stopped completely. I have had rls about 15yrs. In the past I used to alternate yearly between pramipexole and ropinorole. This worked fine for me. I had no side effects just a little twitching when I was due to change medication. I wish the GPs would just leave me alone to take the medication the way I have for the past 15yrs. But they will not prescribe ropinorole for me to change over to. It does not make sense to deprived someone medication that works .
Pramipexole : Hi, I am actually in... - Restless Legs Syn...
Pramipexole
I’m so sorry to hear that. I’m also trying to come off pramipexole and am really struggling. I was also up to 4 a night. I was prescribed gabapemtin and I’m taking 3 a night but can’t feel any difference. I tried to come down to two pramipexole slowly but I’m back up to three as my arms and legs are so bad
I was also in tears last night. It is so frustrating
I don’t know what else to do. My gp is sympathetic but doesn’t understand the condition and his comment was that this is the worst rls he has seen.
I understand completely what your going through . Coming off pramipexole is a lot worse than augmentation .My GP had no idea how to treat me. Got a lot of sympathy but that was about all.I contacted RLSUK.COM who were a great help. I printed off the advice they sent me and my GP is using it to help get off this drug. It is shocking when the patient is advising the GP. Goes to show that this condition needs more publicity
Welcome to the forum. You will find lots of help, support and understanding here.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
To come off pramipexole, reduce by half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. The beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls beginning dose is 100 mg. You say you are on 3 a night, but what is the size of each?
It takes 3 weeks before it is fully effective although it won't be fully effective until you are off pramipexole for several weeks. After that increase it by 100 mg 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.
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 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.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 at Https://mayoclinicproceedings.org/a...
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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in .
Wow what a comprehensive response. I’ve quickly skimmed through but will print and read properly later. Thank you so much.
I feel like I have a strategy to try properly now.
Thank you so much Sue
Dear SueJohnson, My MOM aged 76 years is taking Pramipex ER0.75 from last 6 to 7 years. Want to have your suggestion for the withdrawal of same. Please guide.
Dear SueJohnson, My MOM aged 76 years is taking Pramipex ER0.75 from last 6 to 7 years. Want to have your suggestion for the withdrawal of same. Please guide.
See my advice above. .75 is one and a half times the maximum dose. I wish I had the name of a good doctor as her doctor was really negligent is prescribing that much. I don't even know the name of someone on the forum who is from India although I am sure there must be to whom you could ask. I would suggest you make a post specifically asking for the name of a good doctor in India.
I would print out the Mayo Updated Algorithm on RLS to show your doctor at Https://mayoclinicproceedings.org/a...
Morning, I feel like a new man. I actually had about five hours sleep. I have a slight ache in my legs, it's nothing and no twitching. Wish I felt this way all the time.
Hi, my symptoms started long before I started to take Duloxertine. I hardly noticed it at first. It just go worse over the years. I hadn't even heard of it until I got appointment with neurologist who gave me the medication I am taking now.
Just a few truths that may be difficult to take.
You are suffering augmentation.
Ropinerol is just the same as Pramipexol and will exacerbate the augmentation.
Pregabalin does nothing for the pain of withdrawal, but may be an alternative medication for dealing with RLS after you finish withdrawing. Start it about 3 weeks before the final Stepdown.
Otherwise you have an awful road ahead of you.
Do read up Sue Johnson's replies to many posts on this site.
Good luck.
Sadly, you cannot keep swapping Ropinirole for Pramipexole. Your D1 receptors are now so overstimulated and damaged that the RLS will continue to get worse.You cannot stay on Pramipexole. Withdrawal is hellish, but until you get off Pramipexole AND Ropinirole, you will suffer.
As you aren't able to get off Pramipexole with pregabalin, demand a referral to a pain clinic or neurologist. You will need a low dose opioid to help you through withdrawal.
Ask for 30mg codeine, 50mg tramadol, 10mg oxycodone OR Buprenorphine. Buprenorphine would allow you to get off Pramipexole and would cover the RLS going forward.
But please, please, get off Pramipexole. You will NEVER be free of severe RLS unless and until you get off ALL dopamine agonists.
Get the jewelry scale I recommended to you before so you can reduce very very slowly and follow Joolsg's advice on getting an opioid. You can do it! I have faith in you but don't be in a hurry. Slow and steady wins the race.
Hi Desert Oasis, there are a lot of people out there, me included who began with RLS at the same age, 50 ish when 'the change' starts to happen. Menopause is one of the times when it can raise it's ugly head and then get worse from there. It's not uncommon at all. However, it may be the case that the other cases of earlier onset RLS progress to unbearable earlier due to their early start and therefore are a large proportion on this site? It might be interesting to know what the percentages are. Also, is menopause related RLS as severe as the more chronic, longer term RLS? I would guess that it's hard to know as often the DA treatment of RLS alters the course of this condition by frying the receptors and making it so much worse. RLS does get worse with age therefore I would assume that someone who started in their 30's with it, would have worse symptoms than someone at 50 who starts their journey due to menopause. And what is it about menopause that causes RLS? Some interesting thoughts to ponder. 
hey,
if you find an older pharmacist, you can ask them to make the prami in liquid, and you can perfectly decrease by 1 or 2% at a time and take the exact dose every time. look on their website for pharmas who write things like "your kids cant take medicine? we can change it to a syrup" or for diabetics who cant have sugar so they take it out. it took me a while to find but its a lot easier this way. took me about a year to go from 0.16 to 0, suffered hard but doable.
im now 9 weeks off, still have it in my arms and chest ( which started during the withdrawals) but its getting better.
After ending up back on full dose pramipexole. I now have to wait three weeks to see my GP. I did speak to her on the phone where she said she would look into it. She is the fifth GP I have spoken to about coming off pramipexole in the last two months. Each GP has their own idea about how to go about it.I am also dealing with fibromyalgia and COPD at the same time. It's no wonder I went back to full dose pramipexole. I got some very good advice from RLS.com which the first GP went along with. Now this new GP is saying she would not be happy prescribing a high dose of pregablin. I think RLS com advised 450mg(I might be wrong) she said she was concerned about it becoming addictive and would not prescribe this amount or any amount long term. If I can not have what is recommended what can I have. I am now so scared that they will take away pramipexole and give me nothing but pain killers to replace it. I have RLS every day and night of the week, It has got to the point I do not know which GP said what. I am so confused and upset by the whole situation.
Without a doubt, RLS is a tough row to hoe and next to impossible if one cannot find a neurologist who is well-informed. But it can be done. I have had quite severe RLS for 35 years and it wasn't until the last 4 months that I found a way out.
Like you, I was on dopamine agonist for years. Was switched by my doctors from one to another and got relief, temporarily. Like you, I was desperate. Depressed, in tears every day. Woke every morning not wanting to go on. My first attempt 5 years ago to get off Pramipexole was a bust was given another DA prescription. Then, 4 months ago with help of a good neurologist, the people on this site and Buprenorphine, I was able to withdraw from Neupro and have now been free of any DA for a few months. I am still taking Buprenorphine and sleeping like I have not slept in 30 years with only occasional RLS symptoms.
You can get there. Educate yourself by reading extensively on this site and if possible, find the right neurologist. A neurologist who can help you through the process with empathy and most importantly, one who is well-informed in treating RLS!
Good luck and know that there is a way out! It might be a different way for you than me, but there is a way.
Hi, I only have the occasional rl s but I don't take drugs ,I treat the pain points that cause rls.
Hi. Yes on hrt but that started around 3 months ago. Been augmenting for 6 months
I have a number of health conditions
Epilepsy
Malabsorption of vitamins and other nutrients (had gastric bypass)
Had major surgery in Jan and had 4 blood transfusions after complications
My ferritin is fine due to blood but low folic acid and vitamin d. B12 600 (I do have injections every 2 months)
Taking 300mg gabapentin each evening plus reducing pramipexole 0.88. Down to 2 tablets a night but reduced by half last night
Chris
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