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Would you take Rituximab

Discussion in 'Rituximab: News and Research' started by Andrew, Feb 6, 2012.

?

Would you take rituximab

  1. yes

    62 vote(s)
    51.7%
  2. no

    29 vote(s)
    24.2%
  3. undecided

    29 vote(s)
    24.2%
  1. CBS

    CBS Senior Member

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    For myself, this makes a difference in several ways. First, the work that goes into designing a study (before the first patient is ever recruited) provides some measure of assurance that contraindications and circumstances elevating risk factors and characteristics of patients likely to benefit have been given some serious thought. Second, the oversight provided in a well designed study (a broad range of markers being assessed and a review committee looking for early signs of trouble or patterns that emerge from within a treatment group and their power to stop the study early if warranted) provides an added level of review. Third, in the worst case scenario (some catastrophic reaction), the risk/benefit ratio has still been shifted in favor of a benefit to society if not for myself.

    I would hope that whatever went wrong would be studied. If the same thing were to happen independent of a well designed study, I'm quite sure that my personal problems would be used to condemn the entire endeavor. That would simply compound the loss. ME is far too loosely defined to generalize from one person's lack of response to a treatment (or severe adverse reaction) onto the entire ME/CFS community. I would want there to be some sort of postmortem (literally or figuratively) in order to learn whether or not it is reasonable to generalize from my bad experience (I'm not naive enough to think that someone somewhere would not try to politicize any negative response to treatment - and many people have no clue about the real dangers of doing nothing!). Again, this may not change the negative impact the treatment had on me personally but the thought that something important could be learned about ME would shift my risk/benefit calculation further towards the benefit side.
    WillowJ and Christopher like this.
  2. Dreambirdie

    Dreambirdie work in progress

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    Considering my hyper-sensitivities to pharma drugs and all the adverse effects I've had from trying them in the past, there is not a snowflake's chance in hell that I would EVER consider a drug like Rituximab.
    anne_likes_red and Sallysblooms like this.
  3. Christopher

    Christopher Senior Member

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    Patients are not going to get anywhere without trials like this. It's fine to want to take supplements and heal that way, but we're patients, not researchers. Trained researchers and physicians are the only way out of the hole we're in - not educated guessing as to what number of 1000 supplements we should take. If some of them think that Rituximab has use for us and can help us recover, I'm 100% behind them, and would consider participating in a trial myself.

    Trial and error. Measure me before, during, and after Ritux. If I feel better after and my measurements change, there's a biomarker.

    Have there been any reports of patients getting worse from any of these studies so far?
    Kati likes this.
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I am not doing my supplement research alone. I have an integrative MD. That is what we need more of. Good MD's that understand how the body and supplements work, not just writing a prescription. I know most doctors do not understand what to do. That is really changing.
    MeSci likes this.
  5. Firestormm

    Firestormm Senior Member

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    Hi Andrew,

    If this means that approval had been granted following a clinical trial etc. by NICE (in the UK) then yes I would, and have so voted in your poll. Otherwise - as a 'private prescription' pre-trial and approval absolutely not.

    Even if it had been approved, I would only take the stuff once I was reassured as to the risk/reward. I don't consider myself as being desperate and by that I mean I am willing and capable of making an informed choice - something I consider absolutely vital with this particular drug in its' current form.

    BTW did you see the results from the ongoing ME Association Survey?

    If the MEA Ramsay Research Fund helps to fund a high quality Rituximab trial, would you be willing to take part?

    YES - definitely (58%, 329 Votes)
    YES - probably (22%, 128 Votes)
    Not sure (11%, 62 Votes)
    Probably not (3%, 17 Votes)
    Definitely not (6%, 33 Votes)

    Total Voters: 569

    One can still vote there too: http://www.meassociation.org.uk/ bottom right-hand-side of the page.

    I voted 'Yes - probably' as I felt I would need to know more about the drug than I do now. I have yet to properly read even the Norwegian study! Will get round to it especially if I was called on for a trial :thumbsup:
  6. Christopher

    Christopher Senior Member

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    What level of disability were you at at your worst? Now?

    Do you have a post somewhere that you talk about the supplements you think helped?
  7. Dreambirdie

    Dreambirdie work in progress

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    Because I tend to stick to supplements, herbs, and acupuncture as my main treatment modalities, I almost didn't even bother taking this poll. I know others here, and elsewhere, who are in the same boat as I am--who are very extremely hyper-sensitive to medications, and who therefore shy away from the idea of taking a very strong B-cell destroying anti-cancer drug.

    This makes me wonder how accurate this poll is going to be.
  8. Andrew

    Andrew Senior Member

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    It looks like I didn't set up my poll very well.

    Is anyone other than Fluge and Mella researching this? Anything starting up?
  9. Firestormm

    Firestormm Senior Member

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    Stage III in Norway possibly this summer I think. And other than the MEA here trying to find someone interested in a clinical trial, I haven't heard anything Andrew sorry.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Here is a list.

    http://forums.phoenixrising.me/showthread.php?15440-Sally-s-supplements

    I was bedridden, had vertigo constantly, very ill. Had CFS for 20 years. Then I got much better and four years ago. Hubby bought me a darling convertible and I was driving again! I was in heaven. I was on the board of our homeowners landscaping association. Working with that a lot. I was loving driving.

    Well, not long after getting my car, I was struck by POTS. Postural Orthostatic Tachycardia Sydrome. Autonomic Neuropathy. THIS was horrible. I was at the vet with my bird and I was unable to stand for the first time in my life! I was so sick. A few days later my body was not working anymore. Breathing was hard, blood pressure was VERY high, I was burning HOT, horribly dizzy and lightheaded-I could not move my head/body because of dizziness, nauseous all day and night. Heart rate so high. Goes on and on.

    I looked for help. NO doctor knew what was wrong...LONG story...Finally, I got to my integrative MD. I was diagnosed with POTS. By then I knew that is what it was. More supplements were added to heal my nerves. I had been on supplements for CFS, but more were needed for my POTS.

    The supplements help the nerves heal, they heal slowly. Instead of getting worse as many do, I improved slowly. Then, when Benfotiamine was added, the progress was much faster. I have learned all of the things needed for the nerves to heal.

    I can't even tell you how ill I was. It is such a long, awful story. Trying to make it short.

    I can now walk very well without feeling like I will pass out. I can now go to church without a wheelchair. I still need my scooter for large stores. I have learned to not overdo. It is wonderful to use it. I walk my dog with it too.

    CFS is not a problem for me now. Now it is just the POTS. I am doing better quickly now that my neuropathy in my body is healing.

    There is NO prescription drug that can heal nerves. Without my supplements I would be getting worse and worse. I am very thankful for my supplements.
  11. CBS

    CBS Senior Member

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    Hey DB,

    Nothing scientific about an online poll of convenience, ever. Even less so with a group of self selected forum members (very likely some important difference between those who chose to respond and those who don't - regardless of how a person feels). Really no way to get around this (yes, wording can minimize this but nothing gets rid of it).

    I find the discussion of the reasons for a decision the most interesting part. I have to say, the way you equivocated in your first post ;) made me smile. It also made me sad to be reminded that so many of us have such severe responses to many substances (traditional and non-traditional pharmas, MCS, etc.). I hesitated to answer because I'm always concerned that responses will be judged and that people will take sides rather than coming to a greater appreciation of each other.

    Cheers!

    Shane
    Dreambirdie likes this.
  12. Dreambirdie

    Dreambirdie work in progress

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    Hi Shane-- Good to see you here!

    I appreciate your thoughts on this, as I know how polarized we can get around here at times. Not that we are any kind of exception to the rule, as it seems wherever you find humans interacting on subjects they have opinions about, (especially ones concerning their health and survival), you will undoubtedly be in for some strong polarized opinions. Given that, for a bunch very ill people, with serious brain symptoms, I think we do pretty well.

    And... I hope it stays that way. :thumbsup: At least for a few minutes. :rolleyes:
  13. jenbooks

    jenbooks Guest

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    I would not take it, for many reasons; one is that like DB I'm hypersensitive even to supplements, another is that I've utilized CAM treatments in a slowly put-together protocol time tested and individualized to me, three is that camping in pure air has done me a lot of good, four is that I'm most interested in my case in boosting my immune system and would like to try fecal transplants, maybe autologous stem cell therapy or other stem cell therapy someday, and am going to try 1/100th dose of GcMAF sometime this spring if testing suggests I'd be a good candidate (yes I have an accomodating doc who is willing to start me on such a low dose per my request).

    However, I think it is a very very very exciting treatment especially for folks who are living extremely circumscribed bedridden lives with terrible misery.

    The reason you have to retreat is the drug is depleting b-cells temporarily, and the b-cells are generating antibodies that are actually doing the damage. As the bcells rebound, the antibodies build up again,. It's not that the treatment is a "failure", it's that unless it actually reboots the immune system (which it may occasionally), the immune system will return to baseline. However, rheumatoid arthritis patients can do well with retreatment and live normal lives without horrendous pain, as long as they are monitored, and should immune function be affected, they can be taken off the drug.

    And if the new study pans out, then it is likely companies will start trying to make more targetted drugs, that don't globally deplete bcells.
  14. Guido den Broeder

    Guido den Broeder *****

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    Knowing that:

    - Rituximab treats ME, which I have (and not CFS);
    - I know precisely what it does and why that should work;
    - the risks are smaller than the risks I run without the treatment;
    - alternative treatments (ampligen, valacyclovir) are not available to me;

    my answer is an obvious yes.
    LazyLizard, ikke2001be and Kati like this.
  15. Dreambirdie

    Dreambirdie work in progress

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    Hi Jenbooks--

    I don't mean to go too much off topic here... BUT what are CAM treatments?
    And why take 1/100th of a dose of GcMAF; why not just try out a homeopathic dose instead?\\

    Just wondering...
  16. Snow Leopard

    Snow Leopard Senior Member

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    Right now, no. If it proves effective in the Norwegian studies (including the phase 3 trial), then yes.
  17. Riderofkarma

    Riderofkarma

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    I'm game...

    My Father just had a month of rituxan in September for his vasculitis. The improvement has been amazing, and without any side effects. I know its comparing two different diseases, but he was in such bad shape; much weaker than I am now. He is doing so much better, and I'd be willing to take a chance on getting my life back too. How I could ever afford it is the real problem (no health insurance)... But if I could I would definitely try at least one IV dose.
    _________________

    Strength is Happiness. Strength is itself victory. In weakness and cowardice there is no happiness. When you wage a struggle, you might win or you might lose. But regardless of the short-term outcome, the very fact of your continuing to struggle is proof of your victory as a human being.
    ~ Daisaku Ikeda (Japanese peace Activist and Buddhist Leader of Buddhist organization Soka Gakkai International, b.1928)
  18. Nielk

    Nielk

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    Hi Rideofkarma,

    Welcome to the forum!

    red carpet.jpg
  19. pine108kell

    pine108kell Senior Member

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    If the upside was significant improvement with reasonable odds of removing lots of suffering and the only downside was a moderate chance of relatively painless death then I would take it. My worse fear is something that makes me permanently worse but not killing me. The ratio: % chance of getting much better to % chance of getting worse is the key and that is not known so would pass for now. However, it is something I would definitely consider if it is approved.
  20. jenbooks

    jenbooks Guest

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    Hi, DB: CAM to me is complimentary integrative medicine that equals my glutathione IV, meyer's cocktail, small amounts of IVIG I get that would be considered negligible by mainstream standards, oxygen, etc etc. I saw on PR that Forebearance is doing well on 1/100th of a dose so I emailed that to my doc and said that's what I want to start with. A homeopathic is a totally different idea. I still want a physiologic dose but err on side of miniscule, and later raise it up if necessary. As you know well, a toxic or sensitivity reaction to a regular dose of something is NO FUN.

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