I've been taking pramipexole since the summer of 2020 to address severe RLS symptoms that started around the same time as the first Covid lockdown. Initially I was prescribed two 0.088 tablets but this was soon increased to four. Because I was aware of the augmentation problem I tried to stick to just three tablets per night but when on some occasions I still had a severe attack I would take an extra 1 or 2 tablets. Prior to this I did once try gabapentin for a week but it did not seem to help.
Around two months ago I started to notice soreness in my right nipple (please ignore my user name of MotherShipton, that's the name of one of my favourite moths, I am in fact a 73 year old male). A month later I noticed a lump under the sore nipple. Fearing the worst I spoke to my local GP who told me that this was unlikely to be cancer but instead a reaction to pramipexole which apparently can cause my suspected breast condition, gynaecomastia.
Following a second lengthy session with my GP I have been referred to a breast clinic for a scan as a precaution but the view remains that the cause is most likely to be pramipexole. We have agreed that I must come off the drug. So I'm in my first week of withdrawal, 2 tablets per night for two weeks, followed by two weeks of one tablet followed by two weeks of 1/2 tablet. And then nothing. Having now joined the forum I've been reading the many useful posts and become aware that I'm in for a very difficult time. Indeed, already I'm suffering RL in the early evening, again at bedtime and then periodically through the night. I guess this will only get worse.
I'm hoping my GP will try prescribing pregablin. Or perhaps I should again try gabapentin. We did discuss the use of opioids but I was warned that these had the same augmentation issues as pramipexole and I will therefore certainly not use them.
I don't know if anyone has any further advice on withdrawal? Or experience of gynaecomastia?
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MotherShipton
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Welcome to the forum. You will find lots of help, support and understanding here.
Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch 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 them but they are not uptodate on the current treatment recommendations. NICE in February changed their recommendation to say gabapentin/pregabalin should be prescribed and not DAs so print that out and take to your doctor
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 you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed.
To come off pramipexole, reduce by half of a .088 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.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 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 and your withdrawal symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
1 week as you were on gabapentin wouldn't help much if at all as it take 3 weeks to be fully effective.
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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do 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 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...
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, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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 have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
1) My pramipexole packaging and leaflet are not marked ER or XL and make no mention of slow release.
2) I have reduced my daily pills from three to two since last Friday. I intend to stay on two until the two week period finishes and I will then reduce to 1 1/2 for two weeks, then 1 and then one half for the final 2 week period as you recommend. So far the record has been Friday-Monday nights were not great and last night was RL-free probably because I was very tired and in deep sleep all night.
3) If my GP agrees to prescribe gabapentin or pregabalin I will insist that I have a 3 week start to this as you recommend. She is very keen to get me off pramipexole. My previous GP in Bristol prescribed them in 2020 at the height of Covid and didn't discuss with me the pros and cons. I recently moved to Somerset and my new GP seems far more knowledgeable of the dopamine problems and has been able to give much more time for discussion.
It would be helpful if you could tell me your role with RLS-UK so that I can inform my GP where I'm getting my information from.
4) Following my GP visit I had a ferritin blood test yesterday and am awaiting the results. Previous ferritin results in past years were:
2020: 95.9 ug/l
2019: 123.6 ug/l
I am a vegetarian. I have just started to take 2 plant-based Floradix iron and vitamin tablets daily. Some years ago I started to take conventional iron supplement tables and got a bad reaction with pustules over my face. So I stopped!
I don't have any formal role with RLS-UK. In fact I live in the US. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
You generally don't want to tell them that you are getting your information from us. Instead use the NICE guidelines or the Mayo Algorithm or the RLS-UK information at rls-uk.org/ or the American Association Sleep Association information at jcsm.aasm.org/doi/pdf/10.56...
The only problem with the Floradix is it only has 10 mg of elemental iron and you need 65 mg. to improve your ferritin.
I assume you meant Atorvastatin. Unfortunately all statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US and Triglide which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan which is just a step further from being vegetarian. My husband lowered his cholesterol from 221 to 131 this way.
I made an error in my reply . I should have said The only problem with the Floradix is it only has 10 mg of elemental iron and you need 65 mg. to improve your ferritin.
Since you came down too fast and are suffering, you may want to go back up and start over following the reduction schedule I gave you. I might add it is the same as is given in the RLS-UK guidelines.
Augmentation means increase in Severity of RLS symptoms. NOT increase in dose.Opioids work very effectively for RLS and do NOT lead to an increase in dose.
So your GP is showing total ignorance of augmentation on dopamine agonists and ig about opioids for RLS. Not surprising as GPs aren't taught ANYTHING about RLS or how to treat it.
You're off Pramipexole. So stay off it.
Start either gabapentin OR pregabalin.
They take at least 3 weeks to work. So a week on Gabapentin previously will not have worked.
Gabapentin or pregabalin should be started now. At night ONLY. GPs mistakenly prescribe it 3 times a day. That is for pain. Not RLS.
So start gabapentin or pregabalin as per RLS-UK website. Average dose is 1200 to 1500mg gabapentin taken in 600mg in split doses 2 hours apart. Average dose pregabalin is 150 to 200mg taken in one dose at night.
You need full iron panel blood tests and GP should ensure you raise serum ferritin above 200ųg ideally.
Read and research because your GP clearly doesn't know much about RLS.
In defence of my new GP in Somerset, where I moved recently, she is very keen to get me off dopamines. It was a previous GP in Bristol who prescribed pramipexole with no mention of the risks. I am due to speak to my new GP again next week and I will discuss with her gabapentin/pregabalin and the doses you describe.
She is less keen on opioids but they are still up for discussion.
She also booked me in for iron blood tests which were taken yesterday and I await the results.
Previous ferritin tests in 2019 and 2020 showed 123.6 ug/l and 95.9 ug/l respectively.
That is encouraging.Let the new GP know that iron infusions AND gabapentinoids often do not work for RLS patients who have experienced drug-induced worsening on dopamine agonists. Experts believe it's due to permanent damage caused to dopamine receptors. If that happens- opioids are needed.And if the new GP wants to research opioids for RLS, show her the Massachussetts Opioid Register by Dr John Winkelman, a top RLS expert.
The study proves opioids do NOT cause addiction or tolerance for RLS. Unlike when prescribed for pain relief.
Many of the members on here have been on low dose opioids for years. We are not addicted. We haven't increased the dose.
Dependency is different. This is a lifelong, incurable disease. We will need meds for life. So of course we are dependent on them.
Hi, just to say I am sorry that I have no experience of the condition you mentioned, but I am on pramipexole having tried all the other dopamine agonists for short periods over 18 years and really none of them stop this condition or lessen it so I have just stuck on Pramipexole for that reason. My restless legs became so severe my doc agreed to three, then to four and I have had repeat prescriptions for four even though I suffer badly in evenings, worse at night with complete body shocks a acouple of hours sleep a night.
I then saw a neurologist in 2023 who wanted me to try reducing as I was in the augmentation stage which I had never heard of. , I tried but couldn’t.
. I am now in Spain and because my first night was so miserable so I joined healthunlocked , and then read such awful stories. So I took myself off to the medical centre and was given a doctor who was familiar with RLS and was very understand and listened to me, and said I must come off!
She issued a prescription for Gabapentin 600 mg which MUST be taken three hours before Pramipexole. Then I must take half a tablet LESS of Pramipexole for 6 days, then another half for six days until I am on just a half. She prescribed me Melotonin for the sleep ( banned in UK where I come from).
The first night was hell, then the second night good and the third and fourth night good with sleep and only occasional minor RLS. I am feeling very excited and will do this procedure while I have no commitments in Spain for a month. It will be my dream to come off this terrible drug and hope that Gabapentin does the trick for reducing from at least to mild RLS. My fingers are crossed for hope this time. I hope this helps.
Gabapentin won't help while you are on pramipexole and gabapentin should be taken 1 to 2 hours before bedtime. It does NOT have to be taken 3 hours apart from pramipexole. You can even take them at the same time.
That reduction schedule is much too fast. You will suffer! As I told you before it should be every 2 weeks. This is what is advised on the RLS-UK guidelines at rls-uk.org/ and has been used by most forum members. In any case no matter how slow or fast you reduce wait until the increased symptoms from a reduction have settled before going to the next one.
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