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Rituximab, a Possible XMRV Treatment?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Marco, Dec 8, 2009.

  1. Marco

    Marco Old blackguard

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    Near Cognac, France
  2. Kati

    Kati Patient in training

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    Marco it has been mentioned but that's ok- Rituximab is a good drug and I certainly hope that they get good results with it. I would not hesitate to get it if given the opportunity.
  3. fairlight

    fairlight

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    I have the opportunity to get

    Rituxan but am a bit hesitant.

    According to my doctor there is a 3% chance of getting something called Progressive Multifocal Leukoencephalopathy (PML)

    PML is a rare brain infection that usually causes death or severe disability. Patients should call their doctor right away if they notice any new or worsening medical problems, such as a new or sudden change in thinking, walking, strength, vision, or other problems that have lasted over several days. PML can occur during treatment with Rituxan or after treatment has finished.

    Supposedly if you get this there's no cure and you will die within 6 months. Rituxan is made from mouse proteins. There is another drug called epratuzumab that is made from human protein (this is my understanding) According to my doctor epratuzumab has less side effects but is not yet approved by the FDA.

    I think rituxan is given with methotrexate, which suppresses the immune system. I'm not sure how that would work if we have XMRV.

    http://online.wsj.com/article/SB124381351149970563.html
  4. cfs since 1998

    cfs since 1998 *****

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    I think I would take AZT before I would take rituximab. Especially before the results of the follow up rituximab study come out (the Norwegians are now doing a placebo controlled trial on 30 patients).
  5. Kati

    Kati Patient in training

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    I would tend to agree with this idea IF XMRV is +
    It is not yet known if Rituximab is temporary or not- but it sounds like there has been great benefits- I would also suspect (nothing scientific) that Rituximab would help prevent B and T cell lymphoma, which is a good thing considering that CFIDS patients are at higher risk of getting it (acording to Dr Peterson)

    Tough choice-
    If you are paying for the drugs, money might be an issue as wel. I know Ritux is not cheap at all, don't know about AZT.
  6. redo

    redo Senior Member

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    Rituximab and XMRV, a possible connection?

    As many others I got uplifted when I saw the results from the study on the "anti-CD20 antibody" medicine "Rituximab" on the three CFS patients.

    You can see the results from the study here. The further down the graph goes, the better the CFS patient is. If the graph shows "1", then that means that the patient is symptom free (yes, I know, "0" would be more logical, but that's the way they have done it).

    [​IMG]

    And I find it is especially interesting in the light of the new XMRV discovery. There could be a connection.

    For one we know that XMRV is a retrovirus. One of the most important mechanisms of the HIV infection is that it lowers the NK count of the CD4 cells.

    The Belgian scientist De MeirLeir has found that many CFS patients have low CD57 results - it might be different causes for that - but it also might be that it's because of the XMRV. HIV makes CD4 go down, XMRV might make the CD57 count go down...

    Here's a quote from the scientist who published the study (quote from lymenet):

    This is from WPIs website:
    " (...) The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections."

    Rituximab is a B-cell depleting drug. It could be that what happens when people are treated is that it "hits" the XMRV.

    Whatever reason there is for the improvement, it gives me hope to see that they improve so dramatically in the pilot study.


    You can read the full text of the pilot here:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711959/
  7. Hysterical Woman

    Hysterical Woman Senior Member

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    Very interesting, redo, thanks for posting!

    And welcome to the forums,

    HW
  8. subtr4ct

    subtr4ct Senior Member

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    An interesting and related discussion is here.
  9. cfs since 1998

    cfs since 1998 *****

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    The authors propose two hypotheses. 1) CFS symptoms are caused by autoimmunity, so rituximab is having a similar mechanism of action as in rheumatoid arthritis 2) ongoing infection with a virus that infects B cells. Apparently XMRV infects B-cells so it is certainly a possibility.

    Yes, bavituximab is very fascinating! I remember someone mentioning it and it sounding very promising, but I forgot the name of it, so thanks for reminding me. :Retro smile:

    Basically rituximab goes and kills all your B-cells, but bavituximab kills all your virally infected cells and tumor cells. Very exciting. There are a couple of Phase I and Phase II studies going on for cancer and hepatitis C/HIV. Maybe if it is approved for one of those we could get it off label, though it will probably be a few years at least. It's a pretty small company.
  10. redo

    redo Senior Member

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    It might very well be that XMRV is inside B-cells, and by targeting those, you also target the XMRV. But you don't get rid of all the XMRV, so it comes back... That's one hypotesis.

    The amount of B-cells and the time of their relapse did not correlate (you can read it about 2/3 down the page of the full study, link is above). But it's also very posible that the Rituximab does not only target B-cells. I wouldn't be surprised if we would see changes in HNK-cell function as well when someone gets treated. It's a new drug, and I doubt studies have been done on all of the variuos HNK-cells.
  11. acer2000

    acer2000 Senior Member

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    Yeah thats interesting to know about the B cell counts. I guess I just get nervous about drugs whose effects on a disease isn't 100% understood and which manupulate the immune system by reducing populations of cells. Athough since CFS isn't 100% understood I guess thats all we have. :)
  12. determined

    determined Senior Member

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    cancer treatment

    The fatigue/weakness component of my health problems improved dramatically when I underwent chemotherapy for cancer. It lasted for quite a while. I've heard this from others with CFS who have had cancer as well.
  13. boomer

    boomer Senior Member

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    Very interesting. What drugs were you taking? How long would you say you felt much better? thanks.
  14. Kati

    Kati Patient in training

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    Chemotherapy in general kills the fast reproducing cells including cancer cells, hair cells. blood cells. The white blood cells- including B and T cells which would be the cells of choice for XMRV are destroyed, thus creating a decrease of viral load (my hypothesis) for the virus to happily replicate. This doesn't last since your bone marrow would replace the blood cells usually within 2 or 3 weeks.

    If one can overcome the nausea and vomitting usually associated with the chemotherapy, one would do fairly well.

    (from your chemo nurse)
  15. Jim

    Jim Senior Member

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    i was diagnosed with xmrv, and my nk function is low. but my b-cell count has been above normal. does that sound inconsistant? i have not had my nk cell count done in years, but i don't think it was ever high.
  16. Hope123

    Hope123 Senior Member

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    The B-cells are a separate branch of the immune sytem from T-cells and NK cells so it's not inconsistent since the virus might be affecting different cells differently. I have not heard of anyone having above normal NK cell count/ function in CFS - I've heard below normal and low but normal. (Please post if you've seen otherwise.)

    On the other hand, the T-cell counts and B-cell counts have been all over the place, some high, some low, some normal. Dr. Cheney, whose therapies I am skeptical of but who did make some excellent observations about CFS, wrote about T-cell counts and notes that these are likely different stages of the illness. I also think they can fluctuate depending on various things, like if herpes viruses are activated at the moment.

    Also, the authors of this study are doing a trial with a larger number of people (30) and I heard from a good source that they were planning to unblind the results around this time. They are aware of the XMRV stuff going on. Hopefully, they'll be able to publish results this year. Regardless of XMRV, if this treatment is successful, it could help provide a bridge until better treatment is discovered. Like cfssince1998, I am also cautious though of immune therapies since the immune system is much more complex and interconnected than we know about.
  17. jose luis

    jose luis Guest

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    Dr O. Mella tell-me in Oct 09 that ther results of WPI fit well with the mecanismes behind induct of CFS. They will repeat the analysis of XMRV in their study (30 patients) will be opened from binding in the end Dec 09, but this does not mena that they can transmit the results, but analyze results and writte conclusions...
  18. Advocate

    Advocate Senior Member

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    LJ001 - new antiviral claims few side effects

    XMRV has a lipid envelope. The new drug LJ001 targets only enveloped viruses. The researchers claim it "does not appear to be toxic in vitro or in animals when used at effective antiviral concentrations." It appears to kill only the virus, not the cell.

    If there's another discussion going on LJ001, I've missed it, so here's what I read this morning:
    =============================
  19. julius

    julius Watchoo lookin' at?

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    Advocate,

    Re: lj001

    This is the same way that Lauric acid works. You can buy it as a supplement. It is derived from virgin coconut oil. If you take 2-4 tbsp of virgin coconut oil you get the recommended dosage of lauric acid...but it's hard to swallow that much oil without gagging.
  20. cfs since 1998

    cfs since 1998 *****

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    This is great news! Thank you for posting this.

    But does it get into the blood stream? It's never been tested in vivo. I took lauric acid (lauricidin) at very high doses for 6 months and stopped taking it because I just don't see any evidence that it can work when taken orally.

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