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My Rituximab experience with RA and ME

Discussion in 'Rituximab: News and Research' started by Nielk, Jun 13, 2014.

  1. Nielk

    Nielk

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    I am starting this thread as suggested by other members.

    For those who don't know me, I have been a long time member here. I have been suffering with moderate to severe ME for the past 11 years. I had sudden onset of the disease and was diagnosed by a ME/CFS expert. I fulfill the CCC and ICC criteria.

    My level of functioning fluctuates between mostly housebound and mostly bedbound. Throughout the 11 years, I have had a few windows of better functioning when I have been able to for example plan and attend two of my children s weddings. At other times, I had been mostly bedbound for months at a time.

    About six months ago, I have been diagnosed with Rheumatoid Arthritis (RA). This is a systematic autoimmune disease that mainly attacks the small joints.

    Over a year ago, I started to feel swollen all over my body as if I was retaining a lot of water. My doctors didn't know why. After a while, I noticed that my finger and hands were especially swollen. MY GP was not concerned. He said many of us have our hands swell in the heat. My hands were swollen and painful with the AC blasting away.

    When my ANA came back positive from routine testing, I was referred to a rheumatologist. He was very thorough with his labwork and found that I had markers for inflammation. My RA factor was negative but the more distinctive marker for RA - anti-ccp came back pretty high. He also sent me for a sonogram of my hands which showed inflammation in my wrists and knuckles. He gave me a diagnosis of RA.

    He said it is very important to treat this aggressively at diagnosis in order to prevent permanent damage. So far, I have been on (and am still taking) Prednisolone (steroid), Paquenil (antimalarial med) and Humira (anti TNF). I have had no relief and the disease has been progressing.

    I have now swelling and pain in my feet an ankles. I also have a stiff/painful neck. (not sure if attributable to RA). After discussions with my rheumatologist and taking into account my ME, we decided to tray Rituximab for me. I have just been approved by my insurance and am scheduled for my first infusion next week.

    I will try to post here my journey with this, as some have voiced interest. I just want to caution all that this is by no means an official study. It is just my personal experience. In addition, I do suffer now from both ME and RA so it will be somewhat confusing as to how it is affecting each one.

    In that vain, I am working on preparing a worksheet outlining all my symptoms that are due to ME and those attributed to RA. There might be some overlap but, there are enough distinctions, I think, to be able account for each.

    I am of course exited about the possibilities here, although cautious and somewhat nervous about possible side effects/complications.
     
    melamine, Izola, aimossy and 36 others like this.
  2. Kina

    Kina Moderation Team Lead

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    Good luck with this Nielk. I have my fingers and toes crossed for you. Thank you for posting your journey here -- even though anecdotal, it will provide others with information about Rituximab experience. :hug:
     
    Izola, aimossy, MeSci and 5 others like this.
  3. Iquitos

    Iquitos Senior Member

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    Good luck! Yes, of course, we are interested in your experience. Hope it's a positive one!
     
    Izola, MeSci, beaker and 2 others like this.
  4. Dreambirdie

    Dreambirdie work in progress

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    Yes, good luck @Nielk I hope it goes well and that you have some positive results. Thanks for sharing your personal journey with this treatment.
     
    MeSci, beaker, Nielk and 1 other person like this.
  5. Sasha

    Sasha Fine, thank you

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    Good luck, @Neilk - and thanks for recording your experience. It's going to be of enormous interest!
     
    aimossy, MeSci, beaker and 2 others like this.
  6. Bob

    Bob

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    Best of luck Nielk. Really hope you see benefits for both ME and RA.
     
    MeSci, beaker and Nielk like this.
  7. maryb

    maryb iherb code TAK122

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    Wish you well Neilk, hoping so much you see an improvement.
     
    MeSci, beaker and Nielk like this.
  8. Nielk

    Nielk

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    The plan is to get my first infusion next Thursday and my second one two weeks later. Each infusion will last 51/2 hours. This treatment will be repeated in six months.

    I feel confident with my rheumatologist since she is part of an outpatient clinic connected to a major hospital here in Long Island, NY. They have a whole department where they just do infusions.

    At my last appointment, I was given a tour of the facility where they will do the infusions. It is large, very modern and looks really comfortable. They have separate cubicles for each patients with recliners, tv's, magazines and they told me they have wi-fi, so I can bring my computer if I want.

    They said they will give me tylenol, zyrtec and steroids before the infusion to minimize side effects/allergies to the infusion.
     
    MeSci, vli, snowathlete and 7 others like this.
  9. IreneF

    IreneF Senior Member

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    Good luck! I had a series of ritux infusions with no problems, except for a bit of a fever after the first one. I slept thru them because they put benadryl in my IV. It took about an hour to drive home, and I would just nod out, which drove my husband nuts, because he likes to talk along the drive.

    Unfortunately, I got only a few weeks of CFS/ME symptom remission.
     
    leela, MeSci, vli and 5 others like this.
  10. Nielk

    Nielk

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    I have outlined a spreadsheet on google docs with a list of my symptoms in order to keep track of them. I have set it for public viewing and enabled commenting. I would welcome comments as to how I might improve this.
    I hope you can view it here.
     
    Last edited: Jun 13, 2014
    Izola, aimossy, MeSci and 2 others like this.
  11. Nielk

    Nielk

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    I'm sorry your remission was short lived. Did you try a second round?
     
  12. NK17

    NK17 Senior Member

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    May your RA be a blessing in disguise dear Nielk!

    Let's keep in mind that Prof. Mella and Dr. Fluge at first serendipitously stumbled upon Rituxan as a therapy to modify ME while treating a patient that had lymphoma on top of ME ;).

    Sending you all my best thought.
     
    Last edited: Jun 13, 2014
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  13. daisybell

    daisybell Senior Member

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    Wishing you all good luck.... :thumbsup:
     
    Nielk likes this.
  14. IreneF

    IreneF Senior Member

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    I had a series of six infusions.
     
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  15. rosie26

    rosie26 Senior Member

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    Thanks for sharing this journey with us Nielk. Wishing you success.
     
    MeSci, Nielk and Valentijn like this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Good luck. Hopefully you get a double whammy treating both RA and ME.

    Cheers
     
    leela, MeSci, Nielk and 1 other person like this.
  17. alex3619

    alex3619 Senior Member

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    I wish you the best of luck.

    Remission from ME symptoms is usually not permanent, but in a small percentage of cases it appears to be very long lasting. I hope you are in that group.

    For everyone else, Rituximab gives some weeks to months of reduced symptoms. It needs to be given on a different schedule to that used for RA, and the science is not adequately advanced enough for us to be sure how to use it for ME most effectively. That is one of the points of the Phase 3 clinical trial, to begin answering that question.
     
    melamine, leela, MeSci and 8 others like this.
  18. Nielk

    Nielk

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    I am getting ready for my first infusion tomorrow morning. I am actually excited about it. I am realistic though and am anticipating feeling worse before feeling better. (hopefully)

    I have worked on organization all my lab and imaging results that show any abnormalities, that I could find, on a worksheet here.

    I don't know if I can expect any change after Rituximab but, it was worthwhile for me anyway to have it all in one place.
     
    aimossy, MeSci, snowathlete and 7 others like this.
  19. Hanna

    Hanna Senior Member

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    Best wishes for your first infusion tomorrow Nielk!
     
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  20. daisybell

    daisybell Senior Member

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    MeSci and Nielk like this.

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