Hi, I am new here and this is my first post. I have been on Pramipexole since being diagnosed with RLS more than 20 years ago. For the most part my RLS has been kept under control but I recently switched to a new GP due to my existing doctor retiring. My new GP noticed that the dose was very high (1.5 mg three times a day). She had me phase out the Pramipexole over a few weeks and ramp up Gabapentin to 600 mg AM, 600 mg Lunchtime and 900 mg PM. Well, the first few weeks were absolute hell and then it started to get a little bit better. However, the odd thing is that some days would be fine and then others I would get these attacks that would come on very quickly and get very bad - much worse that I ever had before. I also noticed a lot of ankle pain - not sure if this is related or just random. I decided to start taking 0.75 mg Pramipexole in the early evening and this seemed to help. However, things were never prefect and and would still get these awful attacks that seemed to come from nowhere. I went back to the doctor but had to see someone different due to my new GP being on maternity leave. I asked if I could see the neurologist and he was happy to make the referral but unfortunately appointments were months out. He told me that perhaps for now I shouldn't worry about the high Pramipexole dose and suggested taking an extra 0.75mg at lunchtime. Well since then I have continued to struggle and so I added an additional 0.75mg Promixple in the morning. Since starting with this third dose things have been much better. I am going to leave things where they are at until I can see the neurologist which is now going to late April thanks to a cancellation. I guess I am looking for advice and also wondering if anyone else has suffered this angle pain. I will say the RLS seems to be concentrated to my lower legs now which is a little different to what I am used to. Also, the attacks come on so very quickly and I never had that happen before. I find this strange. Thank you!
Pramipexole to Gabapentin woes - Restless Legs Syn...
Pramipexole to Gabapentin woes
Oh dear Marcus,1.5mg Pramipexole x 3???
I suggest you first consult a lawyer. 4.5mg Pramipexole is so far above the FDA max dose that you should consider legal action against the original.GP
On that dose, you will be climbing the walls with severe RLS!
As your new GP correctly advised, that dose is criminally, negligently high and you WILL have experienced severe Drug-induced worsening of RLS.
Every recent post is about these poisonous drugs. Spend 2 or 3 hours reading the posts on here from the last 2 days.
Start with reading the Mayo Clinic Algorithm.
The advice is the same as your new GP, although slow down withdrawal. Experts advise a 6 month withdrawal on such a high dose. Your GP was absolutely correct to advise withdrawal and replacement with gabapentin, although on your extremely high dose, 3 weeks is far too fast.
As you are now back up to 1.5mg Pramipexole, start reducing by half a 0.088 pill every 2 weeks. You have to get off Pramipexole. It feeds the disease. Look at Dr Andy Berkowski website and watch all his videos. These drugs are dangerous and worsen the disease. They were miraculous 20 years ago, but the new evidence is clear. They worsen RLS.
Get iron panel blood tests and increase serum ferritin above 100ųg.
Have you experienced Impulse Control Disorder ( Gambling, over eating, over spending, hypersexuality)? If so, see a lawyer asap. There have been many class actions against big pharma and doctors.
Gabapentin should be taken at night only and won't work until about a month after the last dose of Pramipexole. So as you're on 2100mg, stay on that, but alter the timing. Take in 600mg doses 2 hour's apart before bed. So 600, 600, 600 and 300mg. Gabapentin will start to work 3 weeks after your last dose of Pramipexole. You may need methadone or Buprenorphine because gabapentin often does not work after years on high dose dopamine agonists.
As you're in the USA, join
rls.org
They have great webinars, a quarterly magazine and lists of local help groups.
The best RLS doctors are in the USA.
Where are you? This is a UK based forum but we have many American members and we know quite a few excellent doctors.
No no no - not slow release pills. When he starts reducing he can't cut the slow release ones. If he does he releases the entire .125 mg at one time.
By the way in the US the tablets generally aren't .088. The equivalent is .125 mg.
I had already noticed that Sue- I meant normal release. The response had already been changed.
ema.europa.eu/en/documents/...
0.088mg pills are the same as 0.125. Each 0.088mg pramipexole pill contains 0.125mg of pramipexole dihydrochloride.
I agree that it is confusing. The USA clearly lists 0.125mg, whereas Europe has that information in the leaflet in the box.
0.088 pill in Europe contains 0.125mg of pramipexole dihydrochloride. So reduce by half a 0.125mg pill every 2 weeks.
Thank you for your reply. Yes, I have been reading and see that the rate of removal of the Pramipexole was too high. I am not particularly interested in going down the legal route at this time, I believe excess litigation is one of the many things wrong with the health system in this country. My iron is fine and has been tested recently and also several times in the past. The new doctor did recommend some Magnesium supplements though which I have just now started.
It is possible there have been some Control Disorder issues although hard to tease apart as I have always had those tendencies in my opinion. The RLS did not start until I was in my mid-twenties.
I am in the US but I am in fact a British expat and moved over here in the late nineties. I have decided to leave the meds where they are for now until I see the neurologist in April. Things seem stable right now.
I am intrigued by your comments on the effectiveness of the Gabapentin while taking Pramipexole. Is there an interaction between these two drugs? Three weeks after the last does of Pramipexole - is that true even if the Pramipexole has been ramped down to a very small does? Also, you recommend taking in the evening only? I can have symptoms during the day - that's not uncommon for me. Is it still best to just take the Gabapentin at night?
Thanks for the advice on rls.org - I will join. I was also looking for in-person support groups but there don't seem to be any. I feel like there were more 20 years ago when I was first diagnosed.
Thanks again for your advice.
You're getting daytime symptoms because of the Pramipexole.As you reduce down, the gabapentin will not interact with Pramipexole. You can take both at the same time.
The gabapentin just won't help much until you're through withdrawal. And that is around a month after the last dose of Pramipexole.
By then, your RLS will have reverted to evenings and night time only. Hence taking gabapentin at night only.
As for iron panel blood tests, doctors tell you they're normal even when they're far too low for RLS patients. You need Serum ferritin above 100, preferably 200ųg and serum iron above 60 and percentage saturation below 45%.
Spend a few hours reading posts, replies and the Mayo algorithm. The more you learn, the better the treatment you will receive.
We only recommend litigation to stop doctors prescribing dopamine agonists.
Otherwise, they keep overprescribing and leaving patients to suffer horribly.
Regarding Iron, my last test result measured Ferretin level to be 87.6 ng/mL. The specified range of acceptable levels was given as 10.5 - 307.3 ng/mL which seems very large to me!! So, are you saying it should be over 100 and preferably closer to 200 ng/mL?
Magnesium supplements were recommended, do you think that would be a good idea?
What is this 'Mayo algorithm' exactly?
Thank you!
mayoclinicproceedings.org/a...
The Mayo Algorithm is the best treatment plan for RLS written by the top experts.
Magnesium supplements help some people, especially if they have a deficiency, but not everyone.
And yes, I do mean your serum ferritin should be over 100ugL, preferably 200 as raising levels does help the vast majority and experts are now saying some patients need higher levels than set out in the Mayo Algorithm. There are several research papers on this.
Unfortunately, not everyone responds to iron therapy. Experts believe it could be because decades on high dose pramipexole/ropinirole causes permanent damage to dopamine receptors and we need functioning receptors to help take up iron in the brain. If we had been treated initially with iron infusions, instead of dopamine agonists, we might have had a successful result, and never needed medication.
I had an iron infusion and it didn't make any difference, but I know 2 people personally who were on dopamine agonists, went through augmentation and withdrawal, have had the iron infusion and are now med free.
Welcome to the forum. You will find lots of help, support and understanding here.
Your dose was 9 times the maximum dose for pramipexole which is .5 so your doctor was right to want you off it, but she was cruel to take you off so fast so no wonder you are suffering. The normal way is to reduce by half of a .125 tablet every 2 weeks letting your symptoms settle before making the next reduction and giving you a low dose opioid temporarily to help especially as you near the end.
You have a strong legal case against the doctor who prescribed that much. If this is the same doctor you have now I would change doctors.
Who is the neurologist you have the appointment with as s/he may not know much about RLS? If you tell me the city and state you live in, I may be able to give you the name of someone who is up to date.
Be sure in any case that the new neurologist follows the reduction schedule I gave you above.
She also has you on a somewhat high dose of gabapentin which is not going to help you much until you are off the pramipexole for a few weeks and your symptoms have settled. Plus taking more than 600 mg at one time actually reduces the dose. It is though you are only taking 540 mg. when you take 900 mg at one time so drop that dose to 600 mg. Then I would reduce your gabapentin by 100 to 200 mg every 2 weeks until you get to 1200 mg.
Once you are off the pramipexole for a few weeks and your symptoms have settled then you can see if the gabapentin helps you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason. You will find that your RLS will only be at night so you don't need to take it during the day. Take 600 mg 1 to 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. If you find the gabapentin helps but at 1800 mg is not enough then you can switch to pregabalin. The equivalent dose is 300 mg and can be taken all at one time, It can be increased by 25 mg every couple of days until you find the dose that works. The usual maximum dose is 450 mg but can be increased to 600 mg,
You may find after being on such a high dose that your dopamine receptors are damaged and the gabapentin may not work. In that case you will need a low dose opioid. The best ones are buprenorphine and morphine as they last a long time whereas the others have to be taken every 4 to 6 hours to avoid mini withdrawals. In that case you will need to reduce your gabapentin by 100 to 200 mg every 2 weeks to avoid withdrawal symptoms. If you do so you won't have any.
Have you had your ferritin checked? This is the first thing a doctor should have done. If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask 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. 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 your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Improving your ferritin will help your withdrawal from pramipexole.
Read 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 at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, 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.
I did not know that about the Gabapentin and how it is less effective if the dose is too high. Maybe I will cut 300 mg from the evening dose.
No alcohol or nicotine but certainly like my caffeine. I am working to moderate caffeine, lose a little weight and cut out late night eating. For the record, I did try some marijuana last time I was in a 'legal' state and frankly I think it made it worse. I have found that a hot bath does work but it is only temporary.
My Neurologist will be David Moore out of McFarland Clinic, Ames, IA. He is new for me as my previous Neurologist, Dr. Kitchell has now retired. However, I have not seen Kitchell for many years - at least 10!
According to Healthgrades he doesn't treat RLS very often. On the other hand Dr. Edward Clemmons at Mary Greely Medical Center -in Ames, IA is considered one of the best in the world for RLS. I would try to get an appointment with him.
Well, I tried to change to Clemmons but unfortunately he is currently taking new appointments out in November! Thanks for the advice, I wish I could have changed but at this point I think I just need to see someone as soon as possible!
Ouch - November. Yep - definitely don't want to wait until then.
Scratch that... they called me back and had a cancellation open up with Clemmons and even better, it is a week earlier than my other appointment was with Moore! Great news. Thank you very much for this advice!! I am very excited to know that I will be meeting with someone who really knows this condition well! Thank you again!!!
That is great !!!
OMG! I got RLS just reading your case !
Absolutely agree with Joolsg and Sue Johnson about filing a malpractice lawsuit.
In fact, just being on pramipexole alone should be enough for filing a lawsuit IMHO. Ok a bit of an exaggeration on my part
You really should consider seeing a competent sleep doctor. Not only that, I’d recommend going to Mayo.
Good luck !
Well, sleep - that's a thing. I did a sleep study just before the change to Gabapentin and started using a CPAP. Well of course the worsening RLS made it impossible to get on with the CPAP and everything spiraled out of control with the lack of sleep fueling worsening RLS symptoms. Back on the Pramipexole and the CPAP I am now able to get 7-8 hours of good sleep per night.
Yep, I’m familiar with that. RLS and CPAP are like oil and water. Before my RLS was under control I wouldn’t bother wearing my mask because I’d have to walk around the house due to the RLS.
Glad to hear your RLS is under control even though you’re taking pramipexole. Sadly most anti RLS medications have their drawbacks. However, for me, dopamine agonists were terrible and I’d rather live with RLS than be on them.
Btw gabapentin alone is not enough for switching from pramipexole. You really also need a strong opiate.
Hey Marcus, I realize I am late to this thread but I would just like to add one note that might help you. I withdrew slowly from a dopamine agonist a couple of months ago with the help of Buprenorphine. It was bumpy at times but nothing like my previous attempts. I am now sleeping better than I have in 25 years.
Good luck to you and I hope your new Doctor has helped you. Rivers
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