Pramipexole - Confused

[Bowie4eva]

Probably being a bear of little brain about this, but wanted to ask:

I am currently taking 300mg of Pregabalin every night for RLS. It is kind of ok, but has not helped with weight gain or mental clarity, and doesn’t always work! I get RLS during the day too. I have MS too and so get up 3 or 4 times a night to go to the toilet - barrel of laughs.

Anyway, my MS neurologist (in Oxford, and I really like and respect him) is aware of the Mayo Clinic views, but is unwilling to give me any opioid (I’m in the UK). He knows the risks of dopamine agonist augmentation, but has still wondered if I should try Pramipexole. I am very reluctant because of the risk of augmentation that I’ve read about in this forum.

I am trying to limit dairy and gluten.

My questions are:

(1) Does augmentation happen to everyone?

(2) How long after you’ve begun to take Pramipexole does it take for augmentation to kick in? (days, weeks, months, years?)

(3) Does it have any other side effects?

Just trying to weigh up whether it’s worth the risk. What a tricky one this is!

Thank you on this forum so much for your support for all of us. X

[SueJohnson]

Up to 70% will develop augmentation. 8% a year will develop it. If you do develop it, it can be hell to come off it.

Can you ask for a referral to a neurologist who may prescribe opioids? Or can you afford to go private so you can see a doctor who will prescribe opioids? Or since the doctor you are seeing for your MS isn't one who specializes in RLS can you see another doctor within the NHS? You might want to message Joolsg who has MS and her doctor prescribes buprenorphine

To come off pregabalin reduce by 25 mg every week or two to avoid withdrawal effects. If you go slowly enough you won't have any. Or if you go on pramipexole, you may want to reduce slowly but stop at a dose that doesn't cause weight gain if that is the case for you.

I may have told you this but in case I didn't: Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, 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.

[LotteM]

Your MS neurologist sounds reasonable. I have been in a somewhat similar position with my neurologist (not for MS, though), and I suggested she get in touch with dr Buchfuhrer (see rlshelp.org) as to why not (return to) DA's and why and which opioids. Dr Berkowski (see relacshealth.com) also seems like a good person to refer to. 'Colleague' medical doctors seem to respond relative quickly to each other. Worth a try?

[Joolsg]

I had a zoom chat with Prof. Alistair Noyce at Bart's London last week. Prof Gavin Giovanonni ( Top MS neurologist) asked him to chat to me about Buprenorphine trials.Both Prof. Noyce AND Prof. Giovanonni say they do NOT prescribe Pramipexole or Ropinirole, even for Parkinson's, because of the VERY high rates of Augmentation.

Both prescribe methadone for refractory RLS.

So, it seems many MS neurologists are now aware of the increasing dangers of Pramipexole and Ropinirole and they are prescribing long half life opioids.

I accept you trust this neurologist, but his views are outdated.

More and more neurologists, and the top MS neurologists, are prescribing methadone or Buprenorphine.

Can you possibly see one of the neurologists out of Bart's?

I suspect rates of Augmentation are much higher than existing studies show. Getting off Pramipexole with MS is extremely difficult. Our balance isn't great so falls are inevitable when trying to get off these drugs.

I personally would never touch one again. Ever.

[Enable]

I've been.on pramipexole 0.18mg for about 10 years or so same dose and it's worked well for me. Either I'm in the 30% that avoid augmentation or I've still got it to come.

[Joolsg in reply to Enable]

That's good to hear. Does Pramipexole give 24/7 cover? Do you ever get RLS in the late afternoon or early evening? I didn't realise I was in augmentation because I was getting 7 hour's sleep every night. It crept up insidiously over 12 years.

I realised something was going wrong when I needed to take extra doses to survive long car journeys.

If you start to experience RLS in car journeys or flights in the day, that is a clue that augmentation may have started.