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Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

Discussion in 'General ME/CFS News' started by Sasha, Jul 30, 2013.

  1. Jonathan Edwards

    Jonathan Edwards Board Member

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    Not really. Bone marrow is where B cells are born and go to make antibody but the similarity between joint tissue and bone marrow relates to the mechanism of inflammation that happens to be triggered by RA antibodies. In thyroid disease the antibodies go for the thyroid, although they are made in bone marrow.
     
  2. Jonathan Edwards

    Jonathan Edwards Board Member

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    I am not sure i can get a feel for what's going on there. Sorry.
     
  3. Sasha

    Sasha Fine, thank you

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    Fair enough!

    In RA, before Rituximab, were immune system drugs being used with any good effects? If so, is it likely that they were also targetting B-cells, or that some other mechanism was going on?
     
  4. Legendrew

    Legendrew Content team

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    One thing I haven't seen discussed here much is the stomach issues many ME/CFS people suffer with - from reading//experience I know that it ranges from GERD type symptoms through IBS type cramping and a whole host of other things and most see this improve during times of remission and get worse during bad days and/or relapses. I sometimes see it attributed to diet etc but I was intrigued to read that several other autoimmune diseases of the nervous system such as MS also causes patients stomach symptoms. Does this come from the autoimmune process under/over-stimulating the autonomic nervous system? From reading I recall that the Vagus nerve is the nerve which connects the central and enteric nervous system and as a sensory nerve the ''attack'' on this would relate to Fluge and Mella's initial theory that ME could be an autoimmune disease of the sensory nervous system.

    I'd be interested to hear what you have to think of this @Jonathan Edwards. Do you agree with what Fluge and Mella initially proposed or are you thinking the problem could lie within the central nervous system or elsewhere?
     
  5. cornwall13

    cornwall13

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    Just a quick question for Professor Jonathan Edwards, if possible, I was given imunovir by my specialist a few years ago and had really good improvements while on the drug ( I have some great graphs comparing my health before the drug and after) I am unfortunately not allowed to take it now because he has retired. he explained that imunovir alters the balance of the immune system. Would rituximab potentially do the same the same as imunovir and try and balance out the immune system?
    Regards
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    interferon and interferon inducers can help increase nk function. ampligen in the most famous interferon inducers for cfs/me, the others are like immunovir. In russia there are quite a few, one which i have used with some success called cycloferon.

    I think fixing the nk function can definately help treat the role of infections, as for the role of autoimmunity i dont know. It may turn out to just be a biomarker but there are a few doctors actively trying to improve nk function with some success in the patients symptoms??
     
    Sasha likes this.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just a thought but maybe drugs like valcyte work through its mechanisms/side effetcs of bone marrow supression as neutropenia is a common side effect of valcyte??
     
    froufox and Sasha like this.
  8. lansbergen

    lansbergen Senior Member

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    And levamisole can cause agranulocytosis,
     
  9. ukxmrv

    ukxmrv Senior Member

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    Here's one paper on Imunovir

    http://www.cfids-cab.org/cfs-inform/Antiviral/diaz-mitoma.etal03.txt

    Clinical Improvement in Chronic Fatigue Syndrome Is Associated with
    Enhanced Natural Killer Cell-Mediated Cytotoxicity:
    The Results of a Pilot Study with Isoprinosine®

    And Prof Pinching did a pilot study but was refused further funding (I've spoken to him about this). Dolphin posted this to another thread and I've yet to find if it was ever published

    http://www.mecfsforums.com/index.php?topic=4454.0

    Findings: Some degree of clinical improvement (reduced symptoms, increased sustainable activity or both) occurred in 30% (definite) or 52% (definite plus probable), typical (in 90%) some months after the courses, lasting some months;
    84% of retreated responders responded again. The commonest side effects were an increase in CFS symptoms during the course affecting some 41%. In those with such side effects, lower dose courses (0.5 gr. Tds for 2 months) were better tolerated but comparably effective.

    (I'm one of the lucky patients who does well on this drug. Was able to receive an NHS prescription for a while but this was refused with the NICE guideline used as an excuse by my PCT)
     
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  10. froufox

    froufox Senior Member

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    Ive tried Imunovir too like ukxmrv and I experienced benefits from it quite quickly, so i guess that at least in my case, that would not suggest the same effect on B cells as Rituximab, and that it was due to some other mechanism. Didnt Dr Cheney say that it is supposed to balance the Th1 & Th2 arms of the immune system, in the direction of Th1?

    Another thing that is supposed to work similarly to Rituximab in its regulation/suppression of T cells & B cell is LDN (low dose naltrexone), via the opioid growth factor and those people who do benefit from it, say that it can take a few months to get the full benefits. So perhaps the suppression of cell proliferation is one reason why they start to feel a bit better after several months? Unfortunately i know that some people cant even tolerate that, even at tiny doses. In my case it helped in the short term but not long term.

    Here are some papers on opioid growth factor, T cells & B cells.

    http://www.ncbi.nlm.nih.gov/pubmed/20598772

    http://www.ncbi.nlm.nih.gov/pubmed/20965606

    http://www.ncbi.nlm.nih.gov/pubmed/21807817
     
    Sasha likes this.
  11. Bob

    Bob

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    I also know an ME patient who is taking Imunovir, with success. And Nancy Klimas, a well-known ME specialist clinician in the US, uses it at her clinic, and says it is helpful. But I don't think she's published any trial results. It doesn't look like there's much published data for Imunovir for CFS.

    This is the direct link to Dolphin's post of the abstract:
    http://www.mecfsforums.com/index.ph...PHPSESSID=ss6a6vntbn65p8aa50amc2l454#msg48261

    (My understanding is also that this research was refused funding and effectively 'shut down' in the UK.)

    And this looks like a published paper for a similar pilot study in Canada:
    http://informahealthcare.com/doi/abs/10.1300/j092v11n02_06
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I've fallen behind again on this thread as the alerts keep not appearing for it!

    I would say that all your symptoms sound like post-exertional malaise. If you are sure that they only disappear when you have antibiotics, perhaps the specific antibiotics you take are most active against acid-forming gut bacteria, which could reduce the vicious cycle of over-exertion leading to muscle acidosis leading to hyperlactaemia leading to gut acidosis and (hypothesised and with some evidence) increased gut wall permeability perpetuating an autoimmune process, although just reducing 'bad' gut bacteria would make you feel better.

    Alternatively, it could be coincidental with the fact that when you have taken antibiotics you have also paced your activities better and therefore recovered more quickly from whatever over-exertion may have led to the symptoms.

    It's worth bearing in mind a saying relating to the common cold which goes something like:

    If you don't take antibiotics, a cold will last about a week.
    If you take antibiotics it will last about 7 days.

    The same applies to an awful lot of illnesses including infections!
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It's well known that antibiotics commonly cause side-effects, notably upsetting digestion, and a lot else follows from this. There info about antibiotic side-effects here.

    As for effects from antibiotics and antivirals sometimes being good and sometimes bad, perhaps it is due to effects on gut flora. An antibiotic may preferentially kill 'good' or 'bad' gut bacteria. An antiviral might perhaps kill bacteriophages/phages - viruses which kill bacteria. If it kills phages that kill good bacteria, you will presumably feel better as the good bacteria increase. If it kills phages that kill bad bacteria, then the bad bacteria will increase and you will feel worse.

    Here's some stuff about gut phages.

    Hypothetical on my part but involves known mechanisms.
     
  14. Firestormm

    Firestormm Guest

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    Try this one also Mr Bob and an interesting wee chart here :)
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Can't see any reference to wee in that chart! :lol: I had to produce wee charts for the docs once. It was damned hard work. They ignored them. :(

    Interesting that the only diet referred to is 'low sugar low yeast'. Nothing about leaky gut diet/gluten-free/low grain/dairy-free. If I was into conspiracy theories and even more enthusiastic about such diets than I am (is that possible?!) I would claim that it is because they are so successful they would put everything else in the shade. Ditto l-glutamine, sodium bicarbonate, alpha lipoic acid, zinc... :D
     
  16. Sasha

    Sasha Fine, thank you

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    I'm sorry, I seem to have derailed this thread a bit by asking about how drugs other than Rituximab might have an action on B-cells on PWME and we've gone a bit off-topic, perhaps, into the wider realm of those other treatments...

    Shall we resume with our regular programme? :whistle:
     
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  17. Bob

    Bob

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    Sasha, do you think that spontaneous remission is very common? I've not knowingly come across anyone else who has experienced that pattern of illness. But very early on, when I first became ill, my symptoms fluctuated wildly, and I did have a very short period where I felt well enough to go back to work, and then a fast crash. (I wouldn't call it a remission, but the symptoms were negligible for a day or two.)

    Jonathan Edwards, I experienced complete remission with hypo-thyroidism. And now, two years later, after my recent ME relapse, it seems that I have suddenly developed hyper-thyroidism. (Most recent blood test results not in yet.)
     
  18. Sasha

    Sasha Fine, thank you

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    I think we just don't have good data on this. :cool:
     
    Bob likes this.
  19. Jill

    Jill

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    I've found both immunovir and LDN helpful. Immunovir became unavailable here in NZ, but I think you can buy it over the net now.
    A doctor here in NZ, gives an injection of naltrexone. If it helps , he puts people on LDN. The help it gives is global - head, pain, fatigue - all goes. I have no idea why.

    When something has helped me, it has helped EVERYTHING . ( that is what I mean by globally).

    I too have always wondered why, as soon as one area of body starts going down hill, then I get back gut symtoms. Its as if there is like a snowballing cascade going on. My crashes are three days still, irregardless of all the meds that help, the meds stop helping once the crash begins. I've always described it like a faulty switched has turned. This has been the consistent pattern now for 30 years.
     
  20. Sasha

    Sasha Fine, thank you

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    So, back to Rituximab, after the detour I inadvertently caused by bringing up other treatments - where were we on Rituximab?

    Can I suggest starting up another thread to talk about the effects of antivirals/immunomodulators in general, if the point doesn't relate directly to Rituximab?
     
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