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!
The Mighty Egg: New Life Springs Forth Despite ME/CFS
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
Discuss the article on the Forums.

Rituximab or Methotrexate (Mtx) for CFS/ME

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by undcvr, Dec 26, 2011.

  1. undcvr

    undcvr Senior Member

    Messages:
    760
    Likes:
    114
    NYC
    Is anyone here on either of these 2 drugs for your CFS/ME.

    If you are uncomfortable with mentioning it here can you please PM me ? I maybe considering going on them.



    Thank you.
  2. undcvr

    undcvr Senior Member

    Messages:
    760
    Likes:
    114
    NYC
    Does anybody know if we can be put on Rituximab in the US based on the Norwegian study ? Would any doctor do that ?
  3. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    I think the most sensible way would be to try to find someone in the US who is trying to get a replication study going. That way, not only would you benefit (or not!) but the entire ME/CFS community would gain knowledge (and in future no patients would have to go this way alone like you have to now).

    The usual suspects for such a study would be Nancy Klimas, Daniel Peterson and Lucinda Bateman or their respective institutions to name only few. Or maybe Derek Enlander in the NYC area. Anyway, get a doctor knowledgable in ME/CFS (not necessary one of the names mentioned) who has at least contact to these people.

    Furthermore if you want (or have to) do this as a last resort without the help of ME/CFS doctor and outside of a study, make at least sure you have an oncologist who is properly knowledged in the drug, its risks and side-effects.
  4. undcvr

    undcvr Senior Member

    Messages:
    760
    Likes:
    114
    NYC
    If anybody knows of such a study going on, please let me know. I am pretty convinced that it is an autoimmune thing even if they have not found any autoantibodies associated with it.

    It is very disturbing to me that cancer drugs are bringing relief to the symptoms of CFS/ME.
  5. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    i believe dr enlander will be starting a study.
    the rituximub wipes out the b cells(lymphoma) and also where the ebv cells are as.
    i live in canada where rituximub is available...but trying to get a doc who will do the paper work to get it and infuse is impossible.
    does anyone know how much is to be infused and how often?did mention this in the norwegian study?
  6. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    Don't mistake these "modern" cancer drugs for "ye olde" chemotherapy. Rituximab targets very specifically one type of immune cells (so called B-cells) and kill only them off. In lymphomas these cells multiply too much, so lymphomas are a specific type of cancer. In autoimmune diseases these B-cells happen to produce something that is bad for the body. Two different diseases, which only seem to share B-cells involvment so Rituximab might help in both.

    That said: Rituximab is no candy and shouldn't be taken lightly. It kills off one type of immune cells and can have side-effects. Patients discretion is advised.
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,921
    Likes:
    784
    Concord, NH
  8. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    i agree no doc is going to prescibe this unless you're in a study and where an oncologist is apart of the trial.
    i was just curious if that info was out there regarding amounts taken etc.
  9. undcvr

    undcvr Senior Member

    Messages:
    760
    Likes:
    114
    NYC
    What I don't understand is that what we have seems to be a cross between cancer and autoimmune. They cannot seem to find autoantibodies of any kind even if CFS has relapses and flares. Yet organs are being affected, specifically the thyroid and adrenal glands. That would mean it would be more like cancer then, where the B cells are overactive, overmultiply or simply malfunction. Incidentally I have been looking up the various kinds of cancers that Rituxuan treats and one of them is rather similiar to what CFS pple have. It is B cell chronic lymphotic leukemia. You can live for years without anything happening to you even after diagnosed with it.
  10. undcvr

    undcvr Senior Member

    Messages:
    760
    Likes:
    114
    NYC
    I am absolutely terrified at where the research and study is taking us. We seem to have an illness that cannot be cured but treated best by taking an antiviral (Valcyte) and a cancer drug (Rituximab) simultaneously.
  11. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    Where do you take that from? Just because there is not enough knowledge about ME/CFS does not mean that we have "cancer". You read WAAAAAY too much into this.

    And by the way: "Cancer" is a catch all category like "vehicle". There are many many different forms of cancer.

    The research does not "take us" anywhere, it can only shine a light on how things already are. Do you want to know what is going on? I want. If you don't want, fine, but then you are wrong here.

    Where do you take this from? I am not aware of any studies showing the effectiveness of Valcyte plus Rituximab, and Valcyte alone surely helps only a few people, if at all. And the tests for Rituximab are at the beginning! We don't know if it helps at larger trials.
  12. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    The easiest way would be to get help from a rheumatologist or immunologist. Rituximab is a on label treatment for RA, so if you have unexplained joint pain (as many ME patients have), and show the Mella/Fluge study to the doc, chances are could get RTX as a treatment attempting to target both. If you could get it prescribed on the condition of rheuma symptoms, there's also a slight chance a HMO would cover it.
  13. CindyWillis

    CindyWillis

    Messages:
    93
    Likes:
    26
    I understand that Dr.Kogelnik is using Rituximab on patients right now. I understand Dr. Erlander is either using it or planning to use it soon.

  14. Mark

    Mark Acting CEO

    Messages:
    4,503
    Likes:
    1,925
    Sofa, UK
    But the very idea of larger trials of promising treatments for ME/CFS are the stuff of a madman's dreams! If the research world is going to continue to fail to research ME/CFS seriously, then small scale trials, unpublished data, experimental science and anecdotal evidence are all we have to go on. If the alternative is to sit and wait for decades to come while the research world continues to ignore us, then it's simply inevitable that sufferers who are desperate for treatment will continue to try anything that shows promise, however thin the scientific evidence may be. Since there's hardly any good evidence about anything, and hardly anybody is researching using appropriate criteria, we have to base our decisions on what little evidence there is. Of course it's not an ideal situation, but that's hardly our fault.

    If you're angry about this situation, then that anger should be directed at the authorities that are failing to fund credible research into ME/CFS, rather than the patients who are pioneering and exploring new treatments as best they can.
    beaker, Snow Leopard, redo and 5 others like this.
  15. ann09

    ann09

    Messages:
    5
    Likes:
    1
    I have had cfs for 30 years. I was recently diagnosed with psoriatic arthritis (PsA), an autoimmune disease. The rheum prescribed methotrexate. I'm afraid to take it. haven't started. However, I wonder if it will have a positive affect on the cfs. I'm very curious, but not sure I'm curious enough to take this chemo drug (at a lower dose for PsA. My minimal understanding is that methotrexate eliminates subsets of inflammatory white blood cells.. Those cells are adding to joint destruction. Does cfs involve inflammatory white blood cells, and the same subset as with PsA? I have no idea.
  16. I have heaps of patients on MTX for rheumatic reasons - it isnt that bad. Just needs monitoring and folate. Esp compared to the severe disability and CNS dysfunction with CFS. If you are "lucky" enough to have psoriasis at least there is a more valid reason to trial MTX. I am sure you will not be disappointed. Whether it will be as impressive as corticosteroids however is debatable. And it isnt addictive.
    ukxmrv likes this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,116
    Likes:
    4,365
    australia (brisbane)
    Do u know or test your patients nk function? I believe they are finding nk dysfunction not only in cfs/me but also MS and rheumatoid arthritis.
    Does MTX directly affect nk function?
    I think alot of people would be interested to hear your opinion on controlling inflammation in immune/autoimmune disorders and how it may relate to cfs/me.

    cheers!!!
    merylg likes this.
  18. We can only do tests which the Government is happy to fund, otherwise opatients in NZ dont like paying for tests. And they are much less curious than in the US. I put a 22 year old patient on steroids the other day - at her mother's request - and she said it was the clearest her brain had been in many years but unfortunately only at 15-20mg prednisone.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,116
    Likes:
    4,365
    australia (brisbane)
    many find low dose steriods between 5-20mg hydrocorte has been helpful, not sure if this is through anti-inflammatory actions or just through increasing energy as cortisol does. Many of us have adrenal dysfunction where cortisol falls within normal range but at the bottom of normal range which i think might not be optimal. Also dont seem to have the appropriate adrenal response to different stresses/infections etc Many do 4 times a day saliva cortisol tests which usually show the proper cortisol rhthym is out of whack. I think this is a part of the neurological aspects of cfs/me as well as playing a big part in our whacky sleep cycles. it would be nice if we could take the broken piece out and replace it, especially the part that controls sleep.
  20. Tristen

    Tristen Senior Member

    Messages:
    612
    Likes:
    421
    Northern Ca. USA
    After hearing of a few PwME having marked improvements on methyltrexate, I had seriously considered giving it a try. I never did due to my fear of exacerbating latent infections due to the immune suppression caused by the drug. There are a few threads on this forum about using the drug for me/cfs. Here's one: http://phoenixrising.me/archives/5190

See more popular forum discussions.

Share This Page