Anyone on pramipexole for fibromyalgia?

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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  • 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:

    I hope you feel better soon. Mary F x

  • 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.

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

  • Pramipexole is quite commonly prescribed for use with Fibro but it must be well managed which many GP's are not really experienced in doing. A few years ago Andrew Holman MD did the attached study with a degree of success and now uses this drug commonly in his practice of thousands of Fibro patients. He advises Guy's FM Clinic which is why Im sure they have suggested it for you.

    inmedix.com/pdfs/pramipexol...

    What he advocates however is that his patients should really have two conditions ruled out before their Fibro is confirmed 1) Sleep Apnea 2) PC3. Only then would he consider starting that drug and even then it may not be in isolation but in combination with other agonists such as Pregabalin for Gaba and Duloxetine for Serotonin and norepinephrine. Its always difficult to know which of the neurotransmitters are depleted. Sometimes it may take one or sometimes a cocktail.

    You should have been offered an antiemetic to help with the nausea to take with Pramipexole especially at the higher doses. If you find that you are still having trouble you could ask your doctor about switching to Ropinirole which comes in lower doses but in the end you may have to weigh up the benefit over the side effects, if they are worse than perhaps that is telling you something.

    I take Plaquenil as I too have APS, Sjogrens and Fibro. Getting on to Plaquenil was a bit slow due to side effects but once on it was no problem. I chose to do it slowly starting with 2 - 3 tablets a week and then every other day until I could tolerate every day. With Fibro our sensitivities to new drugs can make it difficult so I figured it was better to just take it slowly and get on it then start too quick and have to stop.

    Hope thats helpful but if you have any other questions please just ask.

  • 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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