Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Rituximab: what level of recovery is possible?

Discussion in 'Rituximab: News and Research' started by perrier, Nov 9, 2017.

  1. perrier

    perrier Senior Member

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    Having heard only sporadic stories in the media, I'm wondering if anyone has info about what sort of recovery Fluge and Mella saw.

    For instance, were there patients who went back to their pre- disease state: working, exercising, etc.?

    What response did the majority have?

    Any info is welcome.
     
    ivorin likes this.
  2. Murph

    Murph :)

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    I always like to share this table. If you look in the last two columns you can see the scores out of 100 for functioning of the various patients at different time intervals. If you look in column eight you can see the time periods for which they responded. So patient 1, a 24 year old female, had no signs for 22 weeks, then was essentially cured (function scores of 99 and 100 until the end of the study at 156 weeks.)

    Most patients did not do as well, having intermittent responses and less strong function scores. A third showed no response.

    journal.pone.0129898.t001(1).PNG
     
  3. alex3619

    alex3619 Senior Member

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    I think some patients who seemed to have fully recovered relapsed eventually after overdoing things physically. I suspect we can recover to a high level but never fully recover enough to handle high aerobic demand. Once the data from the phase 3 study becomes available, presumably late next year, then we will know much more. Once those patients have a long term follow up we will see how much of this is long term remission.

    I think, realistically, we might be better off talking about remission and not cure.
     
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    My 2 relapses occurred in the off season, when the training cycle was about getting fat and slow and resting up for the increase in length and frequency - having said that, my initial ME lapse was 10 days before an Ironman so I had just finished a heavy training block 4 days earlier.

    So my experience has been complete recovery with lots of swim, bike, run and intense racing - with my relapses happening in December, when training was minimal and intensity almost none existent. So I'm hanging my hat on that - the lure of racing triathlons again gives me hope...though right now I'd be happy just to be able to go for a walk.
     
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  5. perrier

    perrier Senior Member

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    So, basically only one person, a 24 yr old, returned to normal. I'm not sure what to think, but I'm not terribly encouraged...
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    I agree with this statement and even if I ultimately return to normal functioning, I will always consider it a remission and not a cure. (And am not there yet and speaking hypothetically)!
     
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  7. Benji

    Benji Norwegian

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    One of the pilot patients for open label study which Murph links to, is still healthy with more than a 100% job, in the norwegian Health Department. She hasn’t had relapses as far as I know, so been well for some years now.

    One of the patients in the study above said to me that there are a few patients that is still responding.
    For 11/18the response was still there after 3 years, and for 5/18 was still response after 5 years.
     
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  8. JES

    JES Senior Member

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    Uh... how do you get it to only one? Remember that an SF-36 score of 100 means that the person feels excellent on every point of the questionnaire. If you look in the general population, I doubt you will find a large per centage of people that score 100. Remember that in PACE trial the patient was classified as "back to normal" with an SF-36 score of 60 or greater. This was of course laughable, but it's also laughable to define recovery to only mean SF-36 of 100. Truth is somewhere in between. I find the results of that chart remarkable and at least one third recovered massively.
     
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  9. Kenny Banya

    Kenny Banya Senior Member

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    The most encouraging thing about this is the people who, like me, didn’t get a noticeable viral infection before the onset of ME, yet were responders.
    Too often ME is labelled post viral fatigue.
     
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  10. Kenny Banya

    Kenny Banya Senior Member

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    Nailed it.
     
  11. perrier

    perrier Senior Member

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    Ok, thanks... looked a that way. I guess it depends on questions and how someone evaluates himself. If you asked me, ( I'm a caregiver) I would say I was 100 percent, seriously considering, age, work responsibilities, etc. Yet, I can no longer do long distance running, as I did in my youth.
    But believe me, I'm grateful for the encouragement because we have a very fragile family member whom I'm desperate about...
     
    Jesse2233 likes this.

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