I have had RLS for 40 years and have been prescribed Prmipexole for the last 10 years.I was taking 6mg pr day.The augmentation is horrific. I have managed to cut this dose in half. I used Tramadol to help mitigate the worst side effects. I was doing quite well until I gt down to half the dose. Then it got rough!
Yesterday I saw a Neurologist. He seemed to know more than most about refractory RLS but in the end prescribed Ropinerol 3mg twice per day and Gabapentin up to 900 mg daily. He wants me to stop the Pramipexol and suggests Ropinerol, because it works differently even if it is a DA. He also wants me to stop the 2 Tramadol I am taking to help me cut down on the Prami. Once t6his is done we will consider the various opiate choices.
My question is... is he sensible? I have learned that cold turkey on Pramipexole is a bad idea. He seems confident and we got on just fine but I am not impressed by his strategy. Why not get the right opiate and get on with it?!
Can anyone advise me please?
Chrisby
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welschrispy
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No no no no! He is giving you incorrect, negligent advice. I'm a lawyer and would not say this if I didn't know beyond a doubt that it is true.I'm tempted to get you to name and shame whoever suggested this.
You are suffering horrendous augmentation because your D1 receptors are screaming out for their share of dopamine. They will not stop screaming until every bit of dopamine agonist is out if your system.
Ropinirole is another dopamine agonist and moving you to that will quickly set your D1 receptors off again.
The only way you will get relief is to do what thousands of us have done before you.
Keep reducing slowly with the help of an opioid.
If you decide to follow his advice, you will find yourself in exactly the same position in a few weeks, months at the most and then you have to start the process again.
Has he given you a schedule to reduce the Ropinirole? Or does he really think this will stop augmentation?
It's totally up to you to follow his advice but I categorically think he's given you incorrect, negligent information.
Why don't you email Dr. Buchfuhrer, one of the world's top experts, who co wrote the new Mayo Algorithm?
His email is
somno@verizon.net
He answers quickly and I'm pretty sure he will disagree with the advice to switch to 6mg of Ropinirole when you're half way through reducing Pramipexole.
Thank you so much for this! The web site seems to be playing up but I will keep trying. Sorry to Sue also and thank you both. I will write to the doctor you suggest. The doctor I saw at least knew something about the condition but in the end it was the same old stupid advice. The problem is Also that here in Canada we still have the old prohibition mentality and (as well) we really do have a problem (though its not a drug problem!) with drug overdose deaths.
In answer to Sues question yes I did get a blood test and they didn't supply a Ferritin level !!! however my hemoglobin levels were low so I a thinking some iron supplements would be a good idea?
Thanks to you and to Sue for your responses. It's thanks to you both and others on the site who have advised me that I was able to doubt this doctors advice. I may have to resort to some dangerous means of obtaining the opioids I need. I think this is an indication that "the war on drugs" is total waste for time. There are systemic issues which no one will consider. For RLS sufferers it seems that this is a major issue. Quite honestly I see no way of getting the medication I need by legal means.
I am on my last legs (and they are also restless!) with this and considering MAiD Medical assisted death rather than suffer any more. I can sleep, I can't read or watch a movie 24 hr hell is my current lot. Sorry to whine about it. And Joolsg thank you again! You and so many on the site are just the best!
I really feel for you Chris. That 24/7 intense all over RLS is horrendous and like you, I coldly and logically considered suicide while going through withdrawal from Ropinirole.Oxycontin didn't really help but cannabis gave me 30 mins sleep.
I think Involuntary Dancer has suggested kratom to you in the past. That will also help the withdrawal.
Someone posted recently about finding a compounding pharmacist to turn the Pramipexole into a liquid so you can reduce by TINY amounts over a much longer period. With such high doses of Pramipexole, the experts recommend taking at least 12 months to reduce.
And raising your ferritin above 250 may alleviate some of the withdrawals.
Stay strong, many of us manage to get off these poisonous drugs without the assistance of our doctors. It's hellish but possible.
I agree with Joolsg. I assume you meant .6 mg which is higher than the acceptable maximum dose. You should increase your pramipexole back up by .125 mg or more and wait until it settles down a bit before reducing it by .125 mg every few weeks. Keep taking your tramadol to help with this. Switching to ropinirole 6 mg is equivalent to a lot more than the pramipexole you are taking (There is a 4 to 1 equivalence eg .3 pramipexole = 1.2 mg ropinirole ) and 6 mg ropinirole is higher than the accepted maximum ropinirole dose of 4 mg. On the gabapentin it won't help much until you are off pramipexole for several weeks. Once you are off pramipexole for a few weeks, increase it by 100 mg every couple of days until you find the dose that works for you. 1-2 hours before bedtime. Since you are already on 900 mg, take 600 mg 1-2 hours before bedtime. and then 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 of gabapentin or pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." It is important that you 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 at
Once your symptoms have subsided after you are off pramipexole, you can probably stop the opioid as it will interfere with knowing if the gabapentin is working. And unfortunately after being on pramipexole at such a high dose for so long, it is possible that gabapentin won't work, in which you will need to stay on a low dose opioid. But I would go up to 1800 mg gabapentin before concluding this. One other thing, have you had your ferritin checked, and if so what was it?
Thanks so much for this advice. I actually agree with you and with Joolsg but wanted to check the specifics. Yes I requested a good test but they didn't do a ferritin level !!! However my hemoglobin level was very low and something else, forget what, tthe pharmasst sad the may e an ndcaton The we set s reakng p sorry
I just noticed your attempt to correct me on the Pramipexole dose.
No I didn't mean .6mg I meant 6mg!!! I was on 6mg pramipexol six months ago and, with the help of tramadol I have cut down to 3 mg! It near killed me but I did it and I will continue to cut down as soon as I get the medication I need.
So, following on from what you have said about the relative strength of the two medications, am I right in saying that when he prescribed me 4mg Ropinerol this so called Neurologist is really asking me to reduce my DA medication by such a large amount that I might as well go cold turkey?
I would be cutting down from 3mg Pramipexole to 4mg Ropinerol. According to my understanding of your figures. 3mg pramipexole is the equivalent to 12mg Ropinerol? Problem being that 4 mg is the max dose of Ropinerol. The other problem being, as you and Joolsg (And many others! )have pointed out..... this will be a total waste of time.
At age 73 I am disinclined to try this and I thank you Sue for saving me from the most terrible agony. It seems likely that you have saved my life.
As things are I regularly jab a pointed nail scissors into the palm of my hand to distract me when the symptoms get bad which is most days .
This Neurologist will now write to my doctor and say she can take me off the Tramadol which she has been threatening to do for the last 3 months.
I have booked another session with the Neurologist for Wednesday morning I am going to ask him politely but formally to prescribe me the medications that are recommended for RLS. ie Pramipexole, Gabapentin and the best opioid for the job whatever that is for a person with sleep Apnea and chronic insomnia? I am aware of the risk I will be taking with the Opiates but I have done my research and I know what I have to do.
I will begin with a second Ferritin test. (they couldn't even get that right!)
I got a referral to this Neurologist because my GP is trying to force me to get off tramadol. When I tired to explain how awful that will be and that I would have to undo all my hard work and increase the Pramipexole dose again, she said "The condition is incurable and you are responding strangely to the pramipexole. Sometimes Medical science does not have an answer so you will just have to put up with it"
If the Neurologist refuses to supply me with the medications I need in order to get well I am going to talk to him about assisted death which is legal in Canada and apparently easier to get than a small prescription of opioids .
I am disgusted and in despair at the inhumane treatment I am receiving from these people.
I wrote to the Dr. Buchfuhrer as advised but the e mail bounced back saying "insufficient privileges" I have not seen that before. I need to know exactly what I should be asking for on Wednesday morning. I cannot trust the Neurologist to know this and, judging by his performance so far I shouldn't trust him at all!
I would be so very grateful if someone could advise me on what Opioid and what dose I should ask him for . This is critical because of the Sleep Apnea. (I have a bi pap machine and I am, under the circumstances quite fit and in good health (!) .) He is reluctant to listen to anything I say but also too lazy to do the research or even to read the information I supplied him with.
6 mg - unbelievable !!! The maximum recommended dose is .5. He should be reported to whomever (I'm checking with my daughter who lives in Canada as to who that would be) and I believe you have grounds for a lawsuit. But leaving that aside, since right now that is the least of your concerns. Yes the 3 mg would be equivalent to 12 ropinirole. And for gosh sakes don't go cold turkey. If the neurologist won't read the Mayo Clinic Updated Algorithm and won't give you what you need then you need to change neurologists along with your changing your GP. Asking him for medical assisted death might jar him into listening to you, but please don't go that route. You absolutely need an opioid. Tramadol is considered less potent than other opioids. Buprenorphine is used by many on this forum. But I am no expert on this as I haven't taken any opioids for RLS. I suggest you make another post to ask this question as after 3 days most people won't be looking at your post any longer. That is strange about the email being returned with "insufficient privileges." I have never heard of that either and my research can't find anything either. I would try again. If you get the same results you could always write to him at Stanford although that is a lot slower. Also double check the email address you used. It should be somno@verzon.net. Hang in there. Don't give up. Horrible as this all is, you will get better eventually although you have a long road ahead of you to come off 3 mg. And we are with you on this forum.
You need to have your doctor do a blood test requesting a fill iron panel. Your ferritin needs to be above 100. If not or if your If transferrin saturation (TSAT) is under 20% then correcting this helps 60% of people with RLS.
After 30 yrs on pramipexole I have gotten off of it and am on day 40! The first 3-4 weeks were pure hell. I got approved for medical Marijuana and would not have made it w/o it. The detoxing is horrible.... panic and anxiety attacks, scared of everything, no appetite, heightened sensory perception.... leg tremors that were violent and almost non stop. The medical pot has been a lifesaver... I got drops for under the tongue. You may want to look into this. We're all different and react differently, but I know I will not take dopamines ever again. I don't agree with your neurologist, however. I think it would set you up for the same thing you're going through now. Sending prayers for guidance and relief.
Like so many of us, I am ALSO weaning off of pramipexole. I have been taking a "low" 0.375 or 1.5 of the 0.25 mg tablet (with 600 mg Gabapentin) at 1030 pm (prior to a 12 am bedtime) for the dreaded RLS onset at 130-2 am, which would then last for 1 to 3 hours. It was working but I was feeling the potential of augmentation so started reducing pram by 1/4 tablet per week. I am down to 1/2 tablet (while still taking 600 mg gab) and have been there for about a month trying occasionally 1/4 tablet w moderate success - success being no 130 am RLS onsets).
I have not tried marijuana or opioids (and don't plan to...)
BUT NOW....my CBD supplier (Luvive) has developed a new CBD Sleep. I am using it (1 mL at bedtime) and it seems, seems to lessen onsets. I am ready to go all the way to achieve complete elimination of the pramipexole (I have never used opioids for RLS). Then I hope to start reducing Gab, as well, while continuing Luvive
I recommend trying Luvive Sleep. If you do, ask for Samer and tell him Dwain referred you. Luvive is based out of Scottsdale AZ. I have been buying from them for two years and they seem to be honest w high quality, organic CBDs (gummies, tinctures, creams, and sleep). Link: luvivecbd.com/
Sidebar: I also have RLS "onsets" when sitting (driving or riding) in the car, especially after about 4 pm. r. Recently, I realized that it seemed I was sitting on nerves : ) that were triggering RLS. I JUST bought a gel pad ( a good one for $35) and have used it three days as we are on the road and NO RLS!!!!! I pray, pray, pray that He showed me this potential solution.
Everyday I awake w no RLS, I thank God in Jesus name for a restFULL night.
We are allllll so very different. Our trials and tribulations seem to be so unique. I liken it to what doctors call IBS for those of us w digestive issues that my doc/your doc do not understand. They seem to think if they label it (RLS or I S) that it will just go away ...yeah, right!!
Hi, Welschrispy. I feel you-we all do. Wanted to add my 2 cents: I was toggling between ROP and PRAM for years before I went off of both. You can easily go between them. I had no reaction at all; when I augmented on one I turned to the other. BUT, neither are the answer to the core issue.Thanks to this forum I learned that I needed to stop them for good. I was able to get Methadone from a doctor and within a month I had tapered down and was done with the DA drugs.
My new issue is that I have been through 2 doctors who will no longer prescribe the Methadone. It is a monthly hell of will-I-or-won't I get it...?! And one night without it was absolute full body RLS hell on earth.
I live in the huge city of Chicago and I'm spending days on end trying to find someone. I do have an appt. with Dr. Buchfuhrer in CA and another doctor in the suburbs. The appts. are too far away, however. And I don't even know if the one doctor in the burbs prescribes opiates or not.
I hope this helps you. I think I am going to order the Kratom-as suggested on this forum-and see if it will be a good backup.
At any rate-you should not have any more nights of suffering at all! The opiates work for SURE and make the transition very easy. I spread the lower and lower doses of PRAM over about 4 weeks' time and it all worked just fine.
What I didn't expect: "and what fresh hell is this?!"
I am ALSO weaning of pramipexole I was at a "low" 0.375 (with 600 mg Gabapentin) at 1030 pm for the onset at 130-2 am. It was working but was feeling the potential of so stares reducing pram by 1/4 tablet per week. I am down to 1/2 tablet (w 600 mg gab) and have been there for about a mont trying occasionally 1/4 tablet w moderate success (no 130 am onsets).
BUT NOW....my CBD supplier has developed a CBD Sleep. I am using it and ready to go all the way eliminating pramipexole (never used opioids for RLS). I recommend you try it. If you do ask for Samer and tell him Dwain referred you. Luvive out of Scottsdale AZ. I have been buying from them for two years and they seem to be honest w good, organic CBD. Link: luvivecbd.com/
Thank you for the info. Have you tried this CBD without any PRAM at all? I tried a CBD combo recommended so kindly by another poster but it did not work on its own. It is possible that it could in the future, however, when I am months farther away from my DA drug usage and can also get off of the Methadone.
My dream is to use only natural supplements but I still can't tell what my baseline RLS is, first due to the DAs and now due to the methadone. Sigh.
I started the Luvive CBD Sleep formulation after I had started decreasing pram. I am down to 0.125 mg pram with 1 mL of the Luvive sleep CBD. I am now ready to try to get totally off of pram but a bit apprehensive cause I hate having RLS!!!!!
I will go down to 0.0625 mg (1-4 tablet) for a few weeks and see how it goes!!!! Yikes!!!!
The neurology department at the University of Iowa Hospital is absolutely world class. They are really knowledgeable about the subtleties of treating RLS and they have that real Iowa sincerity. And they are only three hours straight flat drive along I-80 from where you are in Chicago. I found them to be a lifesaver for me, after using some pretty good neurologists in south-eastern Iowa.
(I no longer live in the USA, but fortunately so far the local GPs here in New Zealand have been excellent also.)
BTW in 2018 I was advised to go cold turkey on pramipexole and did so without any problems. I know that the experts on this group freak out when I say this, because apparently there’s some syndrome you can get, but I’m just reporting my experience. You rather need someone to bring you your meals for a couple of weeks because you will have so little sleep that you will tend to fall asleep standing up and almost fall down, so you don’t want to be in the kitchen, but I didn’t suffer any noticeable psychological effects, (ie I am no crazier now than I was before lol.)
After a few weeks without any Pramipexole I started to need it again. I started on a very low dose, 0.125, and have been gradually increasing again over the last four years. I am up to .750 now and once I get to 1.2 again I plan to go cold turkey again, and start the process all over again. Hopefully I won’t get to that point for another couple of years.
Overall, I have been on Pramipexole up and down for eight years and it has worked very well for me. I’ll be 70 in about five weeks.
If you went to all that trouble to get off Pramipexole, why didn't you then try gabapentin as it is the first line treatment now prescribed for RLS? I am on gabapentin and my RLS symptoms are completely controlled. This is after augmenting on ropinirole and coming off it.
I was always on Gabapentin as well. Increased it to 1800 when I came off Pramipexole for a while to give my neurons a rest, relieve my augmentation. But eventually it wasn’t enough. My RLS is pretty severe so after a while (I actually don’t remember how long) I had to start Panipexole again. These days I’m on 1200 Gabapentin as well as Clonazepam as well as the Pramipexole.
It was so long ago and so much has happened in the interim that I don’t remember. What I do remember is that I was feeling some despair, but they laid out for me all the different permutations and combinations of medicines that I could use going forward, making it clear to me that I still had heaps of options, which was a huge relief. After some deliberation, together we chose the path that I am on, which has proven to be very successful in the ensuing four or five years. (Of course, successful is a relative term. One wishes one didn’t have to take any of these drugs at all, but that’s life.)
P.S. I just looked up and to my amazement was able to find in my medical records App the name of the neurologist at University of Iowa Hospital who treated me, Ain’t technology great! Young guy named Christopher Groth MD. I strongly recommend him.
I agree with Joolsg. It seems like very bad advice. please hold on and find another doctor, or maybe argue some more with this one. And while you are going through this hell, listen to beautiful music or keep a gratitude journal or whatever will work for you. You sound so down (I don't blame you), and you need something beautiful/hopeful or loving to sustain your spirit if you are going to make it through this.
First, you probably have low iron levels. Some folks need iron infusions (done carefully by knowledgeable docs) to "up" their levels to the > 100 needed by us "night walkers". I brought mine up, thankfully, without complications by taking, per my sleep doc's recommendation, once/day 325 mg of ferrous sulfate in combination with 250 mg Vitamin C (which helps the iron absorb). So that is a critical part of any help for RLS symptom control.
I agree with many who said decrease VERY slowly the pramipexole, at .125 no faster than every week to 10 days - as you up your gabapentin to compensate. I did that sans any opioids (I lock down, intestinally with those so didn't want to add that to my misery) over 6 weeks, but my starting dose to withdraw from was .5 as I recall. I upped my gabapentin, then at 200 mg, gradually to 600 as I decreased my pramipexole. Then for 4 weeks I was just on gabapentin. Then, I stopped the gabapentin and in substitute for it, took a differently absorbed version of it called gabapentin enacarbil, sold, at least in the US under the brand name of Horizant. Once on that, you can't take plain gabapentin any more. The Horizant is long-acting, unlike regular gabapentin and the way it is processed in your body is that it slowly absorbs and releases. Since being on that, I've 99% of my RLS symptoms disappear or at least ease to the point of my controlling them, not they controlling me.
If you've been able to tolerate gabapentin, you likely would tolerate the Horizant version. Some folks have to take that along with a low dose opioid, with methadone often the one my doc recommends folks consider. I wish you well with this journey - since even with a very very slow tapering off of the pramipexole, once seriously augmenting, is pretty nasty. I'd been on a far higher dose for most of the years I took it, only managing to reduce it to what my doc called a maintenance level (back in 2015, when he was still thinking of that as a 1st line treatment - but no longer does), by forcing myself to stay for up to 60 minutes a night on a Relaxis Pad, that I'd purchased at my doc's suggestion, but sans any insurance coverage and so paid around $900 for it, for 5 months until I got my gabapentin/pramipexole regime to relatively low levels. I was fine there for 3 years but then started augmenting again - as well as developing some nasty side effects (uncontrollable eating!) and so went the gradual full taper down to 0 of any dopamine agonist.
OH, in addition to iron and vitamin C and GRADUALLY reducing the pramipexole while upping the gabapentin to the point of maybe being able to try Horizant, you might want to try some B-vitamin combination. Several years ago, in a homeopathic podiatrist suggested I go on a combination of B vitamins, designed to be bio-uptake ready. He prescribed and I've continued to take EB-N3 by EBM Medical which contain L-methylfolate Calcium 6 mg, Methylcobalamin 4 mg, Pyridoxal 5'-Phosphate 70 mg & Riboflavin 1.3 mg. these B vitamins are commonly used to help with nerve issues like peripheral neuropathy, not uncommon for RLS sufferers. Here's from the EBM Medical website, where my doc had set up my prescription: "Medical food formulations using USP grade active pharmaceutical ingredients supported by evidence-based medicine to address chronic metabolic deficiencies. Your healthcare provider has prescribed a product for the metabolic management of deficiencies associated with bloodvessel and nerve damage such as peripheral neuropathy." You may want to check into that as well, since early on around 2015 as I initially started reducing my pramipexole use, I went on the EB-N2 formulation and that may also have helped matters.
I talked with my daughter who was a lawyer in the US but is not in Canada. She works for a small law firm in Vancouver. Her law firm does not do malpractice cases but one of the partners, Dan Griffith is willing to consult with you for free on whether you have a basis for a law suit. I realize you probably are not interested in doing this now with all you have going on, but I urge you to take advantage of this free consult so you will have the information for the future. Any doctor who prescribes 24 times the maximum amount of a medicine for RLS and even higher than the maximum for Parkinsons deserved to be sued. Meanwhile you can report the doctor to the College of Physicians and Surgeons of British Columbia: cpsbc.ca/ as that won't take much time. Mr. Griffith can advise you on whether you should do this too. I am sending you a message with my daughter's name and phone number. If you call her, she will arrange the consult.
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