Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

I was just approved for Rituximab!!!

Discussion in 'Rituximab: News and Research' started by Gingergrrl, Jun 9, 2017.

  1. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Such good news! @Gingergrrl, so very pleased for you, and glad to hear you have a support crew looking after you!:thumbsup:
     
  2. Nickster

    Nickster Senior Member

    Messages:
    117
    Likes:
    713
    Los Angeles, CA
    @Gingergrrl
    I am so happy to hear the treatment is working out -so far so good. I am enjoying reading your updates. You are giving us all some hope.
    I wish you continued success with the treatment!
     
    Last edited: Jul 19, 2017
  3. bspg

    bspg Plant Queen

    Messages:
    316
    Likes:
    1,049
    USA
    So glad it went well for you! :D
     
    dangermouse, Skycloud, ahimsa and 2 others like this.
  4. Webdog

    Webdog Up to 91% remain undiagnosed

    Messages:
    749
    Likes:
    2,589
    California
    So happy the infusion went well for you. Thanks for sharing your story.
     
    dangermouse, Skycloud, ahimsa and 2 others like this.
  5. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,452
    Southern California
    Hooray @Gingergrrl! :balloons: I'm so glad so far so good, and am keeping everything crossed for you! :) As @Nickster said, you are giving us all hope - thanks for all the updates --
     
    Binkie4, Webdog, bspg and 5 others like this.
  6. Jessie 107

    Jessie 107

    Messages:
    76
    Likes:
    195
    Brighton
     This is brilliant news, so pleased everything has gone smoothly for you so far. Thank you for your regular updates, I have been thinking about you a lot and gives us all some hope.
    very much needed.
     
    Mary, Gingergrrl, Webdog and 2 others like this.
  7. justy

    justy Senior Member

    Messages:
    5,130
    Likes:
    11,059
    U.K
    Really great news, couldn't be happier for you xx
     
  8. neweimear

    neweimear

    Messages:
    66
    Likes:
    149
    Thanks so much Gingergrrl, you give us so much info and I really appreciate that,you give me hope. Its so exciting and I truly hope u are a responder and a major responder :) You probably have stated this already but can I ask you if you have other conditions as well as ME/CFS and how severe is your ME?
     
    Mary, Gingergrrl, Webdog and 2 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,933
    Likes:
    22,086
    USA
    Thank you (to @neweimear and everyone who sent me good wishes in this thread!) and I will try to answer your question as best I can. I am no longer certain if ME/CFS is my correct diagnosis although I have an illness that definitely shares many similarities. My former PCP in 2013 gave me a CFS diagnosis (as did other doctors) and for 2-3 years I believed with 100% certainty that it was correct.

    However, my symptoms did not quite match. I had POTS and severe autonomic problems, muscle weakness, and shortness of breath/breathing weakness until I required a wheelchair 24/7 (in Oct 2014). By mid 2015, I had severe MCAS, allergic reactions to all food, and was hospitalized. All doctors agreed that I have POTS/Dysautonomia, Hashimoto's, and MCAS but the muscle and breathing weakness were a bit of a mystery.

    In 2016, it was discovered that I have some weird autoantibodies and we dug deeper and found that I had eleven autoantibodies (and we suspect more). I also tested positive on ANA titer (1:160, speckled pattern) for the first time. Some of the auto-antibodies linked to symptoms I was having so I started on IVIG, and then increased to high dose IVIG, which I have now done for a full year. The IVIG put my MCAS into remission so I can eat all foods without allergic reactions (including in restaurants!) and vastly improved my muscle strength so I can now cook meals and take a shower on my own. Prior to IVIG, my muscles were so weak that I literally could not open a water bottle, my front door, or squeeze shampoo bottle, etc.

    IVIG has improved my POTS and shortness of breath so (on most days) I can walk about 20-25 steps inside my apt without my motorized wheelchair. But this is my most intractable symptom and I cannot walk from my apt to the elevator, let alone to the garage, so I cannot drive a car. My life is a million times improved from mid-2015 (when my family and friends thought I might die from anaphylaxis) and I required close to full-time care. But I am also nowhere back to pre-illness and continue to require wheelchair and have autonomic problems.

    The reason I greatly matched with ME/CFS it that Mono/EBV was one of the major triggers of my illness and I tested IgM+ positive for EBV for several years post-Mono. My NK Cell functioning was incredibly low, I had POTS, MCAS, other co-morbidities, and other things that my doctor considered markers like undetectable Vasopressin. But I did not match in the sense that I do not have fatigue, PEM, brain fog or cognitive issues, no flu-like symptoms, etc. Pacing & resting never changed anything for me and my symptoms were the same every day prior to IVIG. I get improvement from the mast cell medications as well.

    So my doctor strongly felt that b/c of the incredible improvement that I've had from IVIG knocking down the (fully grown) auto-antibodies, that if Rituximab wiped out the B-cells which create the auto-antibodies at production level (which IVIG cannot do), I might be a responder and stand a chance at remission. We are calling my illness a "B-Cell Autoantibody Driven Disease" (which may end up being the mechanism behind ME/CFS in the future, or it may not, I have no idea without a bio-marker).

    As much as I wish that I had a label (besides POTS, MCAS and all these auto-antibodies), it remains unclear. I was severely ill in 2015 and approved for disability on the first go-round with four doctors letters plus I failed the physical exam. In the disability exam, I was asked to squeeze a device to measure my grip strength. I squeezed it until I was gasping for breath yet nothing registered on the machine! My whole disability exam was like this, even though I tried my hardest, and it still saddens me when I think back on it. I'm fairly certain I could make that machine register a grip now (post IVIG) if given the chance.

    So in my best guess, these auto-antibodies were weakening my muscles, including my diaphragm, because I failed every single spirometry and breathing test and an EMG showed my left phrenic nerve was working at only 57%. But now, post IVIG, I passed a breathing test which stunned me. But I test negative for Myasthenia Gravis and LEMS (even though I have the calcium auto-antibody that goes with LEMS and I've been diagnosed with a calcium channelopathy). So it is a bit of a freak show LOL! Is it ME/CFS or something different, I am still not sure!!!
     
    Last edited: Jul 21, 2017
  10. neweimear

    neweimear

    Messages:
    66
    Likes:
    149
    Wow, Gingergrrl, alot going on with you!! You are improving and that is the main thing, long may your improvement continue, wishing you all the very best and looking forward to your news at round 2 infusion xxx
     
    Mary, Gingergrrl, Hutan and 2 others like this.
  11. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    282
    Likes:
    469
    Australia
    Did you get bored getting the infusion?
     
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,933
    Likes:
    22,086
    USA
    I actually was not bored b/c I was so on-guard waiting for the allergic reaction that never happened! In general, and I have no idea why, but I rarely experience boredom. Your question made me try to think of that last time I felt bored but I literally cannot think of it (vs. other emotions like sadness, anger, fear, etc, are very easy for me to think of). But this is way off topic to Rituximab and will stop there!
     
    lemonworld likes this.
  13. Alvin2

    Alvin2 Senior Member

    Messages:
    993
    Likes:
    2,617
    Me either, this seems to be an ME/CFS brain impairing thing.
     
    Murph likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,933
    Likes:
    22,086
    USA
    For me this has been life-long and I did not get sick until 4+ yrs ago. I've never really thought about it until asked in this thread! I experience strong emotions like fear, anger, sadness but I always have this incredibly long list of things I need to do, and feel like I rarely make a dent in it, and that must keep me from feeling bored?
     
    lemonworld and Webdog like this.
  15. Alvin2

    Alvin2 Senior Member

    Messages:
    993
    Likes:
    2,617
    Interesting, i seem to get into a brain zone where nothing really matters when i'm going through PEM (which is often)
     
    Jessie 107 likes this.
  16. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,573
    Likes:
    12,116
    South Australia
    Glad you're doing well so far.

    How long does the first infusion take?

    I know they do the second infusion a bit faster when they know you won't have an allergic reaction.

    (I have a needle phobia so the thought of many hours of IV scares me a lot!)
     
  17. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,933
    Likes:
    22,086
    USA
    @Snow Leopard In my case, the second infusion will be done identical to the first over eight hours. Most people who did not have an allergic reaction the first time would probably do the second infusion in three hours but this is too risky for me. Part of the reason we think I did not have an allergic reaction is because of the slow infusion speed.

    In addition, b/c I once got flash pulmonary edema from plain saline that was infused too fast, I require slow infusion speeds for everything. So in my case, infusion #2 will also be eight hours.

    I have no fear of needles or IV's after a year of IVIG every three weeks in a 3-day split dose! I have a greater fear of allergic reactions. I am not afraid of trying treatments that are considered dangerous but I always do them in the safest way possible if that makes any sense!
     
    Valentijn, Snow Leopard and bspg like this.
  18. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    282
    Likes:
    469
    Australia
    When are you expecting to notice a biological response to the treatment?
     
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,933
    Likes:
    22,086
    USA
    There is truly no way to predict if I will be a responder or when the response might occur. Normally it can take up to six months but my doctor thinks (if I am a responder) that it will be much sooner for me b/c I have already done a full year of IVIG which has greatly reduced the auto-antibodies. I am also continuing to do IVIG every three weeks through Dec (but delayed one IVIG cycle b/c of the two Ritux infusions b/c it was too challenging to coordinate).

    My doctor said if I had not had the IVIG, then the auto-antibodies would be at a very high level and it could take the six months to feel the response from Ritux. But since I have already greatly knocked down the fully-grown auto-antibodies, then once the B-cells are all killed, and no new auto-antibodies are being made, I should feel a response (again, if I am indeed a responder). He thought it might happen at three months but at the same time, he is the first person to say that there is absolutely no way to predict.

    I continue to benefit from IVIG so if I have additional improvements after the next IVIG cycle in Aug, then I am more inclined to attribute them to IVIG than Ritux. But if something is greatly improved in 3-6 months after the second Ritux infusion, I am more likely to attribute it to the Ritux (or the combination). The other issue is that the gains I have made from IVIG are most likely temporary once I stop IVIG vs. with Ritux, the gains could end up being permanent (or at least last for a much longer period of time).

    So even if I did not achieve remission from Ritux, if I could stay at this level permanently once I stop IVIG, I would be glad about this (although I would be disappointed b/c my dream is to walk again without wheelchair and drive a car again- both of which would give me my independence back).
     
    valentinelynx, zzz, Valentijn and 4 others like this.
  20. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    282
    Likes:
    469
    Australia
    Is your doctor aware of & self-educated on the Fluge/Mella trials?
    If so, what were his thoughts?
     

See more popular forum discussions.

Share This Page