Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Is CellCept a tailor made drug for ME/CFS? (B-cells / T-cells / Coxsackie / Herpes)

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Aug 20, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    CellCept (Mycophenolic acid) is an immunosuppressant drug used to prevent rejection in organ transplantation and off-label in certain autoimmune conditions.

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    CellCept inhibits an enzyme (inosine monophosphate dehydrogenase) needed for the growth of:
    • T-cells
    • B-cells
    And although it's an immunosuppressant, reports have shown it has inhibitory activity against:
    • Herpes simplex virus
    • Coxsackie virus
    ------------------------------

    So at face value (given the latest research) CellCept appears to be a tailor made drug for ME/CFS. By suppressing B-cells it should, like rituximab, bring down pathogenic autoantibodies (as Fluge/Mella, Scheibenbogen, Bergquist, Light, and Behan have implicated are present). But unlike rituximab it also targets T-cells which are implicated in Mark Davis' latest research (as seen at the OMF Symposium).

    As mentioned above, it may also have activity against herpes viruses (1) (implicated in research by Lerner, Montoya) and Coxsackie viruses (2) (implicated in research by Hyde, Chia, Ramsay). I should note that CellCept's anti-viral activity has only been shown in vitro, and it can cause opportunistic infections (which paradoxically include herpes).

    Cyclophosphamide (currently showing success in Fluge/Mella's CycloME trial) also targets B-cells and T-cells, but from what I understand it's more toxic than CellCept and can't be used long term (whereas CellCept can). For that reason I'm curious why Fluge/Mella chose Cyclo over CellCept.

    CellCept seems to be effective in other autoimmune conditions. I've been reading many positive anecdotal reports of CellCept being used to treat Lupus, PANDAS/PANS, and even POTS. Interestingly I've not read one report of an ME/CFS patient ever using CellCept although it's listed in the ME/CFS treatment guide "Reviving the Broken Marionette" by Maija Haavisto.

    ------------------------------

    CellCept can be taken orally or through an IV. It costs $219 for 30 capsules (~$2,628 a year) making it more affordable than rituximab.

    CellCept does of course have side effects which include nausea, vomiting, stomach pain, diarrhea, or constipation; headache, mild weakness; swelling in hands or feet; numbness or tingly feeling; anxiety, sleep problems. And like rituximab it carries the risk of deadly progressive multifocal leukoencephalopathy (PML). My understanding is that this risk is low.

    ------------------------------

    I've seen @Jonathan Edwards call CellCept "too blunt of an instrument" in a post a few years ago, but I'd be curious as to his current views on it given more recent findings.

    A friend of mine with a long standing case of post-viral ME/CFS will be trying it soon. I will report back on his results.
     
    Last edited: Aug 20, 2017
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  2. 62milestogojoe

    62milestogojoe What's a forum then?

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    Last edited: Aug 20, 2017
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  3. Jesse2233

    Jesse2233 Senior Member

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    @62milestogojoe these are infections that are linked to those autoantibodies?
     
  4. 62milestogojoe

    62milestogojoe What's a forum then?

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    yes. BTW did you see lansbergen's thread in the diagrammed Neuro stuff I put up last week.?

    He is using a drug called Levamisole to downgrade WBCs and stimulate nicotinic receptors. Results are upgrade of hippocampal and cortical neuron expression.

    I say this because part of my job in the past was therapeutic drug monitoring of Tacrolimus and cyclosporin (similar to Cellcept I think) and pretty toxic to renal function if not dosed correctly.
     
    Last edited: Aug 20, 2017
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @Jesse2233 Several people in my autoantibody groups on FB have taken Cell Cept (with mixed results) but my understanding is that it wipes out your entire immune system and much more dangerous than Rituximab which just kills the B cells but leaves the rest intact.

    One of my best friends also took Cell Cept for lupus (many years ago) but got no benefit from it. She later went into remission but it was not from Cell Cept or Rituximab (which she also tried).
     
  6. Jesse2233

    Jesse2233 Senior Member

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    @Gingergrrl interesting, thanks for sharing that. I guess like all these drugs its effectiveness is case by case. How did your friend's Lupus remission come about?
     
  7. Jesse2233

    Jesse2233 Senior Member

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    Yes I've seen him mention levamisole. It has antiviral properties too right?
     
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  8. 62milestogojoe

    62milestogojoe What's a forum then?

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    These are the links from lansbergen
    I have no idea but the immunemodulator levamisole that I use is an allosteric modulator of α7-nAChR.

    http://www.cell.com/neuron/pdfExtended/S0896-6273(16)00019-2
    Brain a 7 Nicotinic Acetylcholine Receptor Assembly Requires NACHO
    https://www.ncbi.nlm.nih.gov/pubmed/28791958
    The α7-nACh nicotinic receptor and its role in memory and selected diseases of the central nervous system.
    https://www.sciencedaily.com/releases/2017/05/170504131902.htm
    Discovery of new pathway in brain has implications for schizophrenia treatment

    I've messaged him requesting dosage-I think he is microdosing. Will give it a trial I think. 1 x 150mg tablet is only about $2.00
     
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  9. Jenny

    Jenny Senior Member

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    What do you think of the potential of tacrolimus, 62?
     
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  10. Learner1

    Learner1 Professional Patient

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    Is anyone worried about cancer?

    On my cancer journey, I ran into several patients who'd been on immunosuppressants for months to years and ended up with blood cancers...

    I'm very interested in rebooting my dysfunctional immune system, but, as my parents have had leukemia and lymphoma, I'm a bit worried...
     
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  11. Jenny

    Jenny Senior Member

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    Well I can't see much changing in my lifetime and after 35 years of this I'll take some risks for the chance of a bit of respite. My husband has been on tacrolimus for nearly 10 years after a liver transplant and he's had no problems.
     
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  12. BFitz89

    BFitz89

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    I'll take the risk of death over having CFS for another 50+ years. I've only been ill for around a year now, but it's been a year of purely existing. I'm the living dead right now and that's unacceptable.
     
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  13. Learner1

    Learner1 Professional Patient

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    I hear you, but as a stage 3 cancer survivor who beat 50-50 odds of dying, I can tell you that your views might change if you had it...

    Its worthwhile to look at all of this in context with all of the pros and cons. There are many other treatments that can vastly improve our symptoms. There's the opportunity to get better as long as we don't do something that's irreversible.
     
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  14. ErdemX

    ErdemX Senior Member

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    When I searched for it, I saw that this drug is widely used for Lupus and Myasthenia Gravis for many years. There are also a lot of positive reviews from patients with those or other (some very rare) autoimmune diseases. It seems like this is a widely used drug for autoimmune conditions.

    There is also a long history of its usage, at least 10-15 years as an autoimmune drug.

    So maybe the risk of cancer should not be our main concern?

    Also, maybe a short term use of this drug (like 3-6 months) and its response may give some clues to the patient whether there is an autoimmune mechanism involved at the core of the illness.
     
    Last edited: Aug 20, 2017
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  15. Jesse2233

    Jesse2233 Senior Member

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    Cancer is no joke, and its chances are certainly increased with this drug. The risk / benefit calculation is personal to everyone and would hopefully be done in conjunction with a doctor who knows the drug well. But given how many other autoimmune patients take CellCept and seem to benefit, I imagine many might decide it was worth it.
     
  16. Learner1

    Learner1 Professional Patient

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    Its a consideration:

    There are relationships between immune suppression, autoimmunity and cancer...

    http://news.cancerconnect.com/remicade-and-humira-increase-risk-of-cancer/

    https://www.fda.gov/Drugs/DrugSafety/ucm250913.htm

    https://dceg.cancer.gov/news-events...rch-publications/immunosuppressed-populations

    http://mobile.the-scientist.com/article/38557/a-cancer-culprit-in-autoimmunity
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    It's a great question that even she cannot answer b/c she has tried so many different meds/treatments and combinations of them throughout the years. She's tried very hardcore meds and also seen naturopaths, chiropractors, acupuncture, hypnosis, etc, and had several surgeries that were a result of her lupus. At present, she is in remission to the level that her lupus tests are coming back negative and her rheumatologist thinks "mixed connective tissue disorder" is her current diagnosis. I wish I could give a better answer!

    The original Neuro that I saw recommended Imuran and Cell Cept (and then retracted everything) but regardless when I spoke to my own doctor, he felt those were extremely dangerous and that it was much more appropriate for me to start with IVIG to knock down the autoantibodies. Cancer risk was definitely part of his concern since I had an autoantibody that was already a cancer risk in and of itself.

    I agree, having now done 13 months of IVIG at an infusion center that is a cancer center. There are many patients with autoimmunity or other illnesses doing IVIG and other infusions, etc, but the majority are cancer patients and I have seen their suffering first hand. But on the flip-side if something has the potential to keep someone from dying or greatly improve quality of life, I 100% support it. If my doctor had felt Cell Cept was the right path for me, vs. IVIG and Rituximab, I might have tried it and rule nothing out at this point. For me the issue is more about informed consent and knowing the potential risks and benefits of the treatment choices that you make.
     
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  18. Jesse2233

    Jesse2233 Senior Member

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    On what basis did he recommend CellCept and why did he retract it?
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    He recommended it b/c of my autoantibodies and overall state of autoimmunity combined with (at that time) allergic reactions that had gotten out of control and were life threatening. He retracted it when he retracted everything and decided that my entire case was "anxiety" b/c it was too complex and he did not want to deal with or risk treating someone with such severe MCAS (at that time).

    He was a one-time Neuro consult, and even though he felt it was critical to have the lung cat scan with my regular doc to rule out cancer from the paraneoplastic autoantibodies, he did not offer me any further treatment. He diagnosed with me with severe POTS from a battery of autonomic testing, found the autoantibodies w/the blood tests he sent to Mayo, and my QSART and EMG were abnormal. In theory, he found so much stuff, he could have had "bragging rights" and used it to criticize my other docs but instead, he dismissed it all as "anxiety" which was absurd.

    But in the end, it was the finding of the autoantibodies that led to my future treatment (with other docs) which has helped me so I am grateful for that in spite of the fact that he almost sabotaged my entire treatment.
     
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  20. Jesse2233

    Jesse2233 Senior Member

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    SMH, that is insane. Glad he was helpful in finding the ABs at least
     
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