1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

My Rituximab experience with RA and ME

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

  1. deleder2k

    deleder2k Senior Member

    Messages:
    280
    Likes:
    917
    Oslo, Norway
    Do you know how much Rituximab you're getting each time? In the multi centre study with 150 patients in Norway, dr. Fluge and Dr. mella will try one infusion the first day, then after 14 days, 3 months, 6 months, 9 months and after 15 months. They think that lowers the possibility of relapse.

    Good luck!
     
    vli and merylg like this.
  2. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    Best of thoughts for some positive results and thank you for sharing your journey. I've been on a personal adventure myself for a bit lately looking at a possible connection with my arthritic condition and ME. I look forward to hearing about your experience with the "overlap" between the two diseases.....especially in the areas that it turns out to be more than you had expected.
     
    MeSci, Bob, merylg and 2 others like this.
  3. rosie26

    rosie26 Senior Member

    Messages:
    1,082
    Likes:
    1,389
    NZ
    Go well tomorrow Nielk, I am excited for you.
     
    Bob and Nielk like this.
  4. deleder2k

    deleder2k Senior Member

    Messages:
    280
    Likes:
    917
    Oslo, Norway
    Latest from the study at Haukeland University Hospital (few weeks ago): In a randomized phase II study of rituximab two infusions two weeks apart versus placebo in 30 patients with chronic fatigue syndrome, we then completed an open-label phase II study 28 patients received rituximab induction and maintenance therapy, a total of 6 infusions over 15 months.21 patients (72%) had response to defined criteria, 18 patients (64%) had clinical significant improvement in most CFS symptoms.Duration of response within 36-month study period, the mean 108 weeks for 14 major responders and 68 weeks for 4 moderate responders, and 11 are still in response at 36 months follow-up.Side effects: two with allergic reactions, two with upper respiratory tract infections, uncomplicated two with late-onset neutropenia.

    Maybe this is what you can "expect". There is a difference though; they had 6 infusions over 15 months. As I said, good luck!
     
    Iquitos, vli, beaker and 6 others like this.
  5. Nielk

    Nielk

    Messages:
    5,476
    Likes:
    6,086
    Queens, NY
    Thank you!

    I will be receiving one infusion tomorrow and then another in two weeks. Right now, they are saying this should last for 6 months. I wonder if this can be adjusted if need be. I will try to check on that tomorrow.

    By the way, they are also adding Methotrexate (DMARD) along with it the Rituximab. I think this is usual for RA.

    Thank you everyone for your well wishes.
     
    alex3619, Hanna, merylg and 4 others like this.
  6. NK17

    NK17 Senior Member

    Messages:
    476
    Likes:
    1,086
    Wishing the best possible outcome @Nielk !

    We are all rooting for you to get well :hug:.
     
    Bob and Nielk like this.
  7. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,535
    Likes:
    2,093
    London
    Great to hear that the first infusion is tomorrow @Nielk

    Hope it goes smoothly and your recovery starts here.
     
    Bob and Nielk like this.
  8. deleder2k

    deleder2k Senior Member

    Messages:
    280
    Likes:
    917
    Oslo, Norway
    Methotrexate could work out as well. I think the first patient with M.E and lymphoma got that. That's how they discovered that those kind of medicines had an effect. That patient didn't get rituximab, but regular lymphoma treatment. That was at Haukeland University Hospital in Norway in 2004.
     
    Bob, SpecialK82, merylg and 3 others like this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,415
    Likes:
    4,811
    australia (brisbane)
    i hope u come back and tell us your cured.
     
    Izola, Tristen, SDSue and 5 others like this.
  10. Cheshire

    Cheshire Senior Member

    Messages:
    173
    Likes:
    466
    France
    Thanks a lot for sharing all this with us.
    Best wishes.
     
    Nielk likes this.
  11. bertiedog

    bertiedog Senior Member

    Messages:
    442
    Likes:
    256
    Good luck for today @Nielk I really hope you get a remission of all your symptoms.

    Pam
     
    Tristen, Ritto and Nielk like this.
  12. Nielk

    Nielk

    Messages:
    5,476
    Likes:
    6,086
    Queens, NY
    I'm here at the infusion place. They started my IV. First they put through steroids agains possible allergic reaction. They will start the rituximab in a few minutes. The dose is 1,000 mg which is standard for RA. They took blood first to check some levels. Another doctor is doing a research study here to check the B cells before the Rotuximab and then again after a year. I agreed to take part with the understanding that I will get a copy of my results.
     
    Izola, MeSci, aimossy and 18 others like this.
  13. SDSue

    SDSue Southeast

    Messages:
    584
    Likes:
    1,262
    Florida
    Wishing you the very best, and hoping to hear positive results. Thanks for your willingness to post your progress!
     
    MeSci and Nielk like this.
  14. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,535
    Likes:
    2,093
    London
    That great news about the B cells testing research NielK

    Hope the infusion goes well for you!
     
    Izola, NK17 and Nielk like this.
  15. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,711
    Likes:
    10,214
    Amersfoort, Netherlands
    Do you know how much fluid you get with it? The IV saline is a nice perquisite of IV-based treatments :D

    I only get 200mL 4 times per week (100mL saline mixed with antibiotics and 100mL plain saline), but even that little feels pretty damned nice.
     
    Izola and MeSci like this.
  16. Nielk

    Nielk

    Messages:
    5,476
    Likes:
    6,086
    Queens, NY
    Good question. I'm not sure how much but I would think its a nice amount since they run this for over five hours. Yes. It might be an added benefit.

    They are monitoring me very closely for possible allergic reaction. So far so good.
     
    MeSci, aimossy, Tristen and 8 others like this.
  17. SpecialK82

    SpecialK82 Senior Member

    Messages:
    897
    Likes:
    475
    USA
    Fingers crossed for you today Nielk, I'm excited for you starting a new treatment, hope you love it!
     
    Nielk likes this.
  18. Nielk

    Nielk

    Messages:
    5,476
    Likes:
    6,086
    Queens, NY
    I am so thankful to be back home, in my bed. They had to stop the treatment halfway because I had a mild allergic reaction. I started to develop a cough and scratchy throat. They gave me more anti-histamines - waited for a while and then continued successfully.

    Hopefully, I will get a good night's rest.
     
    aimossy, leela, justy and 16 others like this.
  19. alex3619

    alex3619 Senior Member

    Messages:
    7,722
    Likes:
    12,628
    Logan, Queensland, Australia
    This mild reaction is not uncommon from my understanding. They don't want to give too much anti-histamines, so they give what is enough for most, and then top it up if you need more.
     
    MeSci, vli, Ritto and 3 others like this.
  20. beaker

    beaker CFS/ME 1986

    Messages:
    431
    Likes:
    663
    USA
    Is this info published somewhere ? Wondering your source.-- would like to share info w/ my dr. Thanks.
     

See more popular forum discussions.

Share This Page