Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

Tocilizumab / IL-6 / Mitochondrial Dysfuction - A possible treatment option?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, May 30, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California
    Tocilizumab (Actemra and RoActemra) is an immunosuppressive drug, mainly for the treatment of rheumatoid arthritis (RA) and systemic juvenile idiopathic arthritis.

    It is a humanized monoclonal antibody against the interleukin-6 receptor (IL-6R). Interleukin 6 (IL-6) is a cytokine that plays an important role in immune response and is implicated in the pathogenesis of many diseases, such as autoimmune diseases, multiple myeloma and prostate cancer.

    IL-6 has been found to be elevated in severe ME/CFS (1) and excess IL-6 has been linked to mitochondrial dysfunction (2).
    I've not seen any discussion here or anywhere else on using Tocilizumab as a potential treatment of ME/CFS, and don't know of anyone ever trying it. It's likely that IL-6 is not the core driver of the disease, but blocking it could perhaps improve symptoms in some.

    Of course it might end up being a game of a whack a mole in terms of treating abnormal immunological findings, but it seems to be quite effective for RA patients (3).

    Perhaps the idiosyncrasies of each aberrant ME/CFS immune system in a certain subset require a unique monoclonal intervention, and this could be one.

    Tocilizumab is given by injection once a week, its side effect profile seems to be gentler than Rituximab

    My usual proviso that I have no scientific or medical background applies :)
     
    ErdemX, AdamS, ScottTriGuy and 4 others like this.
  2. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California
    Sancar and Marky90 like this.
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,234
    Likes:
    31,936
    No, because we can be pretty sure that IL-6 is not involved in ME. The body has a very sensitive self-assay for IL-6 which is the production of C-reactive protein. C-reactive protein is normal in ME. Moreover, the consensus of cytokine studies in ME seems to be that if there is anything different it is that IL-6 is low in ME (in particular Hornig's findings).
     
  4. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California
    This study shows IL-6 is elevated in severe ME, I believe Hornig's study showed it decreased after 3 years
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,234
    Likes:
    31,936
    The study you quoted in the first post from Marshall Gradisnik says IL-6 was decreased in the abstract as far as I can see.
     
  6. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California
    Decreased in moderate, increased in severe
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,234
    Likes:
    31,936
    'IL-6 was significantly decreased in moderate CFS/ME patients compared with healthy controls and severe CFS/ME patients.'

    That would seem to mean that in severe patients it was normal. Otherwise the abstract would have said it was increased. This is sloppy writing of an abstract anyway - it should have figures - but there is nothing here to say it was actually up in the severe patients. Healthy controls and severe patients are put together in one group in this sentence.
     
  8. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California
    Just double checked the main study, you're right professor, I stand corrected. IL-6 is strangely normal in the severe and healthy, and it's decreased for the moderate. I can't fathom what this means, perhaps we are looking at different diseases. I was likely biased when interpreting this by my own truly elevated IL-6 serology.

    For those of us with idiosyncratic well out of range cytokine markers, do you think there's any value in attempting to nromalize them with drugs like tocilizumab?
     
  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,234
    Likes:
    31,936
    What it means is that this is a chance result or a heterogeneous population or one of the usual confounders in this sort of study.

    If your c-reactive protein level is raised then it is likely that a raised IL-6 measurement actually reflects something real in your physiology. A raised c-reactive protein (CRP) usually has an explanation - and not ME. If the CRP is normal then the IL-6 result is likely an artefact.
     
    Abha likes this.
  10. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,431
    New Zealand
    Speaking hypothetically of course, :), if your c-reative protein has been raised since illness onset, reliably over many tests but just mildly so (10 to 20), would it be a good idea to get IL-6 tested? Would it provide any more clues?

    My doctor suggests that some people's normal CRP levels are just higher than the standard range and it probably isn't a problem. (But maybe they feel fine, while I feel rubbish...).
     
    Sancar likes this.
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,234
    Likes:
    31,936
    The range for CRP is tenfold different in different countries so we need to be careful. In some countries 10-20 is normal. In the UK the upper limit of true normal is about 3. It is true that each person has a different CRP response range so 3 for one person would occur in the same situation as 1 for another, but above 3 in UK units probably means something is wrong whoever you are. That might be an old patch of damaged lung from childhood that is always a bit inflamed so sometimes no cause can be found but there probably is one.

    In UK units a CRP of 10-20 is grossly abnormal and must indicate some fairly substantial pathology. It cannot be put down to ME. There is not much point in doing an IL-6 test because CRP often occurs in response to local IL-6 production in liver in response to Kupffer cell activation, in which case the serum IL-6 may be normal. I am also not sure that serum IL-6 assays are really reliable enough to be helpful.
     
    Jesse2233, Hutan and Abha like this.
  12. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,431
    New Zealand
    Thanks very much @Jonathan Edwards. The unit for the CRP levels I'm quoting is mg/L. Reference ranges are given by the labs as <5.

    One reason that I haven't got that excited about CRP is that my son and daughter got sick at the same time and we have/had very similar symptoms. But they don't have raised CRP, so I doubt it's the key to unravelling our problem. As you say, perhaps I had high CRP before the ME symptoms, I don't know.

    I do have mildly elevated ACE (two tests, both elevated), so I've finally convinced my doctor to let me have a chest x-ray.

    Sorry, Jonathan, I guess this is like when you are at a party and someone wants to tell you about their sore finger joint. And you nod understandingly and now they are showing you their bunions....
     
    Valentijn and Jesse2233 like this.
  13. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,821
    At least it's not a butt lesion :wide-eyed:
     
    Groggy Doggy, boombachi and Hutan like this.
  14. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,431
    New Zealand
  15. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California
    Sancar likes this.
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,234
    Likes:
    31,936
    I find it hard to believe that a physician would give tocilizumab to someone 'pretending to have RA'. RA is pretty obvious if it is bad enough to need tocilizumab. Maybe this person does have RA. If the physician was fooled then it seems that the patient is pretty good at giving misleading information!!! So...
     
  17. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California
    Perhaps, what do you make of the NCNP wanting to run a trial of tocilizumab for ME?
     
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,234
    Likes:
    31,936
    No idea what NCNP is. I think we need some more robust information!!
     
    Jesse2233 likes this.
  19. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,709
    Likes:
    4,289
    Southern California

See more popular forum discussions.

Share This Page