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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Who tried immunosupressive treatment/drugs?

Discussion in 'General Treatment' started by DanielBR, Aug 9, 2014.

  1. charles shepherd

    charles shepherd

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  2. charles shepherd

    charles shepherd

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    Regarding the use of prednisolone and other immunosuppresive drugs in ME/CFS

    These results from two very small uncontrolled trials here in the UK were never properly reported in the literature and date back 30 years:

    Prednisolone at 10 to 60 mg/day produced no overall benefit and anecodotal reports from several patients who have been prescribed higher doses of steroids also indicates that while a few have reported some improvement this has not been so for most cases and some people have felt worse, or much worse

    A two month course of prednisolone at 30mg per day, with or without azathioprine (another immunosuppresive) at 150 mg/day, was also tried in 10 cases but no change was reported. In fact, this group were more symptomatic at the end of the course
    The sooner we get to grips with the fact that there various clinical phenotypes and disease pathways under the ME/CFS umbrella the better
    It's rather like placing anyone with any type of joint disease - mechanical, infective, inflammatory - under a chronic joint pain syndrome and saying that they all have the same underlying pathology and will therefore respond to the same approach to treatment
    ukxmrv, NK17, heapsreal and 7 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Steroids increase neutrophil counts but making the blood vessels 'forget to be sticky in response to chemokines'. If the blood vessels are not sticky the neutrophils just keep going round and round the circulation instead of going out to patrol the tissues. It is confusing because neutrophil counts normally go up because during infection more are made, rather than (with steroid) less been used up.

    Jonathan Edwards discussion of "What ME might be" is continued here.
    Last edited by a moderator: Aug 10, 2014
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  4. deleder2k

    deleder2k Senior Member

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    Oslo, Norway
    Anyone else tried? I am especially interested in Methotextrate. With frequent check ups and folic acid, it seems that it is not that dangerous.
    Remember that It was the remission after a round of Methotextrate treatment, for a patient diagnosed with lymphoma and ME, that led Fluge and Mella to try B-cell depletion with Rituximab. Methotextrate got him temporarily "healthy again". Methotextrate is cheap, and is available in a pill form.

    What is there to lose for long term sufferers?

    Edit: just realised i have tried an "immunosuppressive drug", called Kenacort-T 40 mg/ml (Cortisone). Not sure how much it helped me. Felt better for a some days, but it was just a minor effect. Helped my pollen allergy though.
    Last edited: Aug 21, 2014
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Methotrexate in low dose works moderately well for certain conditions where there is major cytokine driven inflammation - like rheumatoid and psoriatic arthritis, and also for psoriasis. In low dose it is probably not much use just as an immunosuppressant for autoimmune disease without overt inflammation - which I think ME would fall under. In higher doses used as part of immune suppression it is quite toxic. Even at low dose, errors in prescribing have sometimes led to bone marrow suppression. So the likely benefit is difficult to predict. That being the case I think it might be justified to do a placebo controlled trial. One off usage is hard to justify because of the placebo effect confusing interpretation. A difficulty with a placebo controlled trial is that most people taking methotrexate know they are taking it because it produces at least mild nausea or GI upset.

    You might ask why go on studying rituximab without trying methotrexate since it is much cheaper. I think an important point here is that if rituximab works it tells us something fundamental about the ME disease process that is responding. If methotrexate works it would not tell us much. The other point is that if methotexate was really good for ME then it would have come to light when people with ME hapened to be treated for other reasons and apart from the Norwegian case this does not seem to have happened. That may not mean much but it suggests that methotrexate is not an easy answer.
    DanielBR, rosie26, NK17 and 5 others like this.
  6. deleder2k

    deleder2k Senior Member

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    Thank you for the answer. As you point out, methotrexate don't seem to be the answer. Rituximab is more specific, and works better. I thought however that i could help the sickest ME patients before Rituximab treatment is available. Fluge and Mellas patient had lymphoma cancer and was treated with a high-dose of methotextrate. Too bad if low doses won't have the same effect.
    From my understanding, it will be 3 years before the phase 3 study in Norway will be published. Fluge and Mella sent out a statement today saying that the study will launch in late August. 152 participants. They also say that they are overwhelmed by the response, and that study centres are forced to draw from patients which fulfill the Canadian criterias.
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  7. Ninan

    Ninan Senior Member

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    Some gossip and uneducated guesses while waiting for Fluge and Mella to publish:

    I heard from someone that they make a difference between patients who got ME after a mono infection and others. Since we know they are looking for factors that might be able to predict the response from rituximab, that difference might have something to do with that.

    They have said that rituximab probably doesn't work through killing off EBV viruses, since the effect would come quicker then. But looking at the PWME:s who got better and seem to stay better, I only know the trigger infection (or at least what seemed to be the trigger infection) in two cases, but it was mono in both cases. Elene, the girl who carried the canoe on TV and Maria G both seem to have a great and lasting effect and they both got ME after a mono infection. Could it be that the ones who stay well are the ones who got ME after an EBV infection? That rituximab in their cases doesn't just stop the autoimmune process but also eliminates the source of the problem, eg EBV? While some others might get better from rituximab but are not cured / have long term effect?

    If this is the case, then it might tell us something about what is causing the autoimmune reaction. If it's viruses, then the rest of us might have viruses who don't hide in the B-cells but in the ganglia (HSV-1), brain etc, which are not as easy to just kill off. (At least not without undesired effects. :p )

    All this assuming that viruses who are hiding and hardly show up on a blood test can cause autoimmunity involving B-cell activation. Hope they publish something soon cause I fear my guesses aren't very educated ones. :oops:
    NK17 likes this.
  8. Ninan

    Ninan Senior Member

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    Wasn't the patient who got better from methotrexate the same patient who got better while treating her lymphoma? From what I read they have tried MTX on two patients: Her and a man who had no effect at all. She had effect from 10 mg MTX/week but only for about 25 weeks.
  9. deleder2k

    deleder2k Senior Member

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    Yes, the patient was treated for lymphoma.

    I've also heard so. I wonder why that is. I read however that methotrexate have a larger anti-inflammatory effect than immunosuppressive. From my understanding Cyclophosphamide and Azathioprine does a better job reducing the activity of the immune system. Maybe @DanielBR knows more about this :)
    Last edited: Aug 21, 2014
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  10. DanielBR

    DanielBR Senior Member

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    Germany
    From the Fluge and Mella pilot study (2009). The Mtx dose their first patient got during her chemotherapy was a moderate 30mg/m2 iV every third week. Her case started also with a bad case of Mono. She was ill for 7 years.

    "The MIME chemotherapy regimen contains methotrexate (Mtx) in moderate doses (30 mg/m2intravenously every third week). Based on the observed clinical benefit on CFS symptoms in this patient from MIME, the lack of improvement from the three other chemotherapy regimens, and the known (but poorly understood) immunomodulatory effects of low-dose weekly Mtx treatment in e.g. rheumatoid arthritis, we speculated that the observed clinical improvement was related to Mtx. One of the effects of weekly oral Mtx is a moderate B-cell depletion [12]."

    After that she was offered Rituximab and improved after 6 weeks. She got it twice and then Mtx again, which worked for 25 weeks (7,5mg to 12,5mg). After that she got Rituximab again in combination with Mtx.
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  11. deleder2k

    deleder2k Senior Member

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    Can anyone share their experience with prednisone? I guess a few have tried that.
  12. Ninan

    Ninan Senior Member

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    According to Jonthan Edwards MTX doesn't supress the immune system in the RA dosage. It's too low for that.
  13. fibrodude84

    fibrodude84 Senior Member

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    Been on 25mg of methotrexate & 50mg of mercaptopurine for crohns, didn't help fatigue but made it worse.

    Been on biologic meds remicade, humira and cimzia and it doesn't help ME/CFS.
  14. Ninan

    Ninan Senior Member

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    Thanks for sharing, @fibrodude84

    Too bad they didn't help!
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