Anyone on pramipexole for fibromyalgia? - Hughes Syndrome A...

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Anyone on pramipexole for fibromyalgia?

aussiesue profile image
4 Replies

I was diagnosed with fibro 7 years ago and only recently have started to go down the APL/APS/Lupus route after seeing a Haem at Sttom. Re the fibro, having tried every medication under the sun so finally the fibro consult at Guys hosp suggested I try pramipexole which did well in clinical trials for fibro pain. I'm wondering has anyone else had experience with this drug? I am struggling with side effects, terrible weight gain, sleep problems (too sleepy or not able to sleep properly) and nausea. I'm at optimal dose now after 14 weeks and am wondering how long I should persist, given that pain reduction has been about 10 percent rather than 30. I'm hoping plaquenil which I am about to start will help me better with pain and fatigue. I'd be grateful to hear of anyone elses experience but realise pramipexole isn't a well known drug for fibro.

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MaryF profile image
MaryFAdministrator

Hi there, have they tested your thryoid? This often does not show up straight away, and in other countries the testing criteria is less stringent! Just a thought. I have hypothyrodism which did not show up in standard tests however did in detailed private tests; Here is an example of what I mean:

youtube.com/watch?v=lyc8N_m...

I hope you feel better soon. Mary F x

aussiesue profile image
aussiesue in reply to MaryF

Thanks Mary for the suggestion, I have had this checked out in past at my insistance and had it looked at under a private allergy clinic, although its sub normal its not majorly underactive. I'm in London and agree even here they don't look into thyroids enough nor do the proper tests. I admire you for your enthusiasm and persistance with this important subject, good luck and keep it up. Anyway, thankfully thyroid problem is one of the few things not on my list, lol! Thanks again. :-), sue.

MaryF profile image
MaryFAdministrator in reply to aussiesue

good xxx although it can cause gall bladder problems and hair loss later on. I hope you get better soon xxx M x

aussiesue profile image
aussiesue

Thanks Lynn, really appreciate your helpful reply. I was thinking about the pros vs cons of my reaction to pramipexole and its good to be reminded that we all react differently so if cons outweigh (haha) pros then pay attention to that. Don't want to be on any more meds than I need to be so will start to titrate off the prami and get back to a reasonably good sleeping pattern and weight. Just started on hydroxychloroquine so hope it works for me as it does for you. Thanks again for the advice and link. Sue.

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