The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Wondering about Rituximab and Fibromyalgia.

Discussion in 'Rituximab: News and Research' started by Folk, Mar 16, 2015.

  1. Folk

    Folk Senior Member

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    I gotta say I still don't understand how Fibromyalgia could be a comorbidity of CFS/ME if one of the main symptoms from ME is widespread pain. (feel free to enlighten me :) )

    But let's assume that's right and FMS is really a commormidity of CFS/ME.

    If Rituximab is achieving (or will achieve in the next big studies) results that englobe an improvement (or a remission) of all the symptoms, that includes pain, so that include the comorbidity Fibromyalgia.

    So maybe Rituximab might be a future choice for Fibromyalgia (not as a comorbidity) treatmeat?

    Was that easy to follow?? hehe
     
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  2. barbc56

    barbc56 Senior Member

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    I would ask @Jonathan Edwards

    I also have fibromyalgia and have often wondered if it's a subset or a distinct medical condition similar symptoms. TBH, I can't remember if I have ever had a diagnosis of me/cfs. I thought I did but can't find any records that show this. However, I have lost records from the first two or three years of my illness.

    Maybe we don't have the medical knowledge at this point because of overlapping symptoms and comorbid conditions to determine this?

    Thanks for bringing up this question.

    Barb
     
  3. alex3619

    alex3619 Senior Member

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    All we can say for sure is that fibro appears to be an overlapping condition with some biochemical and physiological conditions. It frequently co-occurs. So if Rituximab is shown to be effective in the phase 3 clinical trial, then it would not be unreasable to wonder if a pilot study for fibro is advisable.

    However the first thing I would want to do is ask what case histories exist of fibro patients with lymphoma who have had Rituximab. If evidence exists of it working it would be there. Since fibro is much more common than ME it is likely there would be a lot more evidence out there. We just have to find it.
     
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  4. barbc56

    barbc56 Senior Member

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    Didn't think of that. It sounds like it would be an important question to ask.

    Thanks.
    Barb
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    Just a thought...Rituimab is a hardcore medicine. It's not something I would turn to lightly for Fibro. Something to think about since I had CFS and then fibro came on 13 years later; it came on suddenly and within a year I also had joint pain.

    When I went to my now rheumy, he said Sjogrens and Fibro go hand in hand as does arthritis. He also said, many people respond to Plaquenil who just have Fibromyalgia.

    I DID. Took all of the body pain away, but I developed migraines and headaches. That would be something to try, however. I would look into Plaquenil. It's nowhere near as strong, or somewhat dangerous. I may try Plaquenil in the future in the brand form, since many respond to that one better than the generic. I was on the generic. It was like a miracle as far as taking away pain, but I was too sick with the cluster headaches, a main side effect..and migraines (were what my body turned them into.)

    My rheumatologist straight up feels that Fibro is an auto immune situation many times, (people on the Fibro board freak when I say this--why I don't know) but many with fibro have allergies, rashes, etc. So, Plaquenil can calm that down and gently nudge the immune system to calm down. You have to have your eyes checked every 6 months on it. I took only 100 mg 3 times a week. Most people take 400 mg a day.

    Just a thought. If you can find a practitioner who might want to think outside of the box...and it's far easier to get.
     
    Last edited: Mar 17, 2015
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