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Tocilizumab is amazing, anyone tried?

Discussion in 'General Treatment' started by StrayCat, Jun 5, 2017.

  1. StrayCat

    StrayCat

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    My friend was a severe ME patient.He couldn't walking alone.But he started Actemra(tocilizumab) 3 months ago.(He cheated a RA doctor.He pretended to has RA)
    I can't believe that how he recovered.now he can running faster than his healthy friends and getting healthier every day.
    (in addition,he said,Actemra autoinjactor is unbelievably easy to use and painless.)

    I was very moved that's effects so searched on the internet to know other ME patients using this medicine,but couldn't get any informations.

    He said,a doctor who belongs to NCNP(Japan) told him that tocilizumab may effects ME and thay want to start a study/clinical trial in the near future.

    anyone have experiences or informations?

    (I'm sorry that sometimes I couldn't reply to your comments.Somehow I'm afraid of watching comments for me.)
     
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  2. AdamS

    AdamS Senior Member

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    Can't say i've tried or even heard of Tocilizumab before, looks like it's a monoclonal antibody against the interleukin-6 receptor (IL-6R). I believe IL-6 levels have been shown to vary depending on disease duration/severity in ME/CFS but could be wrong. Perhaps @Jonathan Edwards would be interested in commenting on it. Either way, while this is just one case, it's exciting to hear such a vast improvement.
     
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  3. StrayCat

    StrayCat

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    Thanks for your comment!
    Reading long English sentences is difficult for me but I'll try read that.
    I forgot to say,interestingly before trying tocilizumab,his CRP rebel was normal and didn't find any autoantibodies.
     
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  4. AdamS

    AdamS Senior Member

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    No problem :) Sorry for the long sentences. I'm very happy to hear of your friend's progress!
     
  5. Jesse2233

    Jesse2233 Senior Member

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    Interesting I've been researching this drug!!

    Did they measure his IL-6 levels before?
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    @StrayCat can your friend speak English? And would he be willing to come on here and share more about his experience?
     
  7. AdamS

    AdamS Senior Member

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    Looks like Lunasin also reduces IL-6 and is available as a supplement. No idea if it would be of any benefit.
     
  8. Jesse2233

    Jesse2233 Senior Member

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    Interesting

    I know there are a whole class of anti-IL-6 drugs used in RA as well as a set of supplements that also act against IL-6
     
  9. Jesse2233

    Jesse2233 Senior Member

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    Anti-IL6 agents from @Hip

     
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  10. Groggy Doggy

    Groggy Doggy Guest

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    Jesse2233 likes this.
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Maybe your friend does have RA?
    It would be very difficult to persuade a doctor you have RA if you do not, at least in the UK.
     
  12. Jesse2233

    Jesse2233 Senior Member

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    Perhaps doctors in Japan are more liberal with tocilizumab as it was developed by a Japanese company
     
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  13. jpcv

    jpcv Senior Member

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    how can someone pretend to have RA?
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Good question!!
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    They might even be working for that company.
     
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  16. ErdemX

    ErdemX Senior Member

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    So, maybe, while the patient was thinking he is tricking the doctor, the doctor was actually tricking the patient pretending to believe the fake RA claim :)
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I have no idea b/c I test negative for rheumatoid factor and have no joint pain or redness. If I had RA, my insurance would approve the Rituximab but I don't and you can't create a fake autoantibody test that I am aware of! I have every other autoantibody on the planet but not that one.
     
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  18. Jesse2233

    Jesse2233 Senior Member

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    @StrayCat, do you know if his onset was sudden from a virus? Specifically a Coxsackie virus?

    This article states that IL-6 is important in lessening the severity of chronic autoimmune myocarditis caused by coxsackie so perhaps blocking the IL-6 receptors with Tocilizumab would not be a good idea for everyone. Would be interested in @Hip's and @halcyon's thoughts on this as well

    Interestingly, this study shows that use of the drug, along with the corresponding fall in IL-6 levels, improves glycolysis by increasing levels of pyruvate dehydrogenase (!!!).

    Tocilizumab also significantly boosts 7 of 9 enzymes in the Krebs cycle:

    And it increases glutathione

    Changes in glycolysis and Krebs cycle proteins after 4 months of Tocilizumab. Note PDH's increase in NK Cells (CD56+) among other interesting findings

    upload_2017-6-5_18-28-13.png
     
    Last edited: Jun 5, 2017
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  19. StrayCat

    StrayCat

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    Thanks,everyone!
    He can read English.but can't speak/write well. I'm writing his proxy.
    He was pleased with your comments.(me too!)

    He went to a RA doctor and told him
    "I was taking MTX 6 months.it is effective,but I can't stand side effects.I wanna quit MTX,is there anything good medicine?
    now I'm on MTX,therefore even if you test my blood,you cannot find any abnormalities that I had 6 months before.(for example,RF,anti-CCP etc)"

    Actually,he was taking MTX 6 months and it was effective a little,it's true.
    He knew that if can't use MTX,doctors will choice tocilizumab. it's not required with use MTX.
    Doctor tested his blood.there were no abnormalities.next week he decided to prescribe Actemra for him.

    He requested me to keep his lies secret with other persons except members of this forum.but he want to spread tocilizumab's effectiveness around the world.
    he said,"please speaking everyone this point,however please don't speak about my lies."
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It sounds as if your friend has RA. The presence of RF or anti-CCP is not what matters. (It sounds as if he/she did have them at one point anyway.) Tocilizumab is excellent for the fatigue of RA.
     
    mrquasar, Hanna, Sancar and 1 other person like this.

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