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Appt at rheumatologist - will ask about off label Rituximab treatment

Discussion in 'General ME/CFS Discussion' started by Kenny Banya, May 4, 2017.

  1. Kenny Banya

    Kenny Banya Senior Member

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    I am seeing my rheumatologist in a couple of days. I will be requesting a prescription to start using Methotrexate, which he had already agreed to do a year ago. I didn't go ahead with it because it coincided with extremely rapid worsening of ME (literally within a couple of days, thanks entirely to using Modafinil). The Specialist at CFS Discovery who I saw told me to not go ahead with MTX, as she believed her advice & prescriptions would improve my condition & that joint pain is also typical of ME. Well, one year on, they haven't. If anything I am actually worse, even though I discovered I am Casein & fructose intolerant & have adjusted my diet for.

    So I am biting the bullet & getting MTX. I had no absolutely no response to corticosteroids (Solone/Prednisone), but boy did it give me shocking insomnia. I have joint pains throughout fingers on both hands, hence why my symptoms mimic Rheumatoid Arthritis (not Osteoarthritis).

    remember reading of some evidence for MTX having an effect for ME. So I might get some extra benefit. Even though I didn't get any benefit from corticosteroids, the rheumatologist was still willing to prescribe MTX. He did say though that if I do respond to MTX, I would be only the second person in the history of his public & private practice to have done so, when not responding to corticosteroids!!!

    Anyway, I will ask him whether he would be willing to prescribe Rituximab off label, after the Norwegian trials are published. As RTX is typically used for severe cases of RA & it is an autoimmune disease like ME, it would make sense for a rheumatologist to administer it.
    I spoke to Roche Australia, the manufacturers of RTX, about getting the drug approved by the Therapeutic Goods Administration for listing on the Pharmaceutical Benefits Scheme, after the trials are published. The technical advisor gave me the email contact about getting the listing. However she was also kind enough to explain the technical process for getting RTX administered off label, as it is an application process that has to be reviewed.
    Anyway, I am interested to see what a typical rheumatologist's view/position is, for off label treatment, particularly one as dangerous as RTX.

    UPDATE - see below
     
    Last edited: May 8, 2017
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  2. jpcv

    jpcv Senior Member

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    I also had no response to prednisone therapy.
    Tell us what your doctor thinks about Rituximab
     
  3. Kenny Banya

    Kenny Banya Senior Member

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    Ok, so I got the prescription for Methotrexate from the rheumatologist.
    Just taken first pill.

    I subsequently asked him about administering Rituximab off label, after the Fluge Mella Norwegian Phase III trial research is published this year. He said he would be willing to consider it, obviously after its published.
    So that is a positive, in that at least it's a future (very expensive) option, but also that a rheumatologist would administer it.
    On the scary side, he said he recently had a patient develop multifocal Leukoencephalopathy after Rituximab treatment, which was of course devastating to the patient, knowing their pending death. It is of course a relatively rare side effect though.
    Anyway, just wanted to give some people hope for treatment sooner than they might have expected.
     
    Last edited: May 8, 2017
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Do you know if that patient was taking other immunosuppressants at the same time as RTX? I know PML is a risk, and have no doubt this occurred, but my doctor said that if you are not taking other immunosuppressants at the same time, the risk is extremely low (and re-activation of TB or hepatitis is a much bigger risk than PML).

    You can test for the JC virus (Stratify test or even a DNA test) prior to starting RTX to know your status but even this is of course no guarantee. Am very sorry to hear about that patient (but happy that you may have a shot at RTX in the future)! I am still in the middle of the process of trying to get it but am closer than I was before.
     
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  5. Kenny Banya

    Kenny Banya Senior Member

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    Yeah, I didn't get a chance to ask this as I was rushing to ask the main question so as to not hold up the next patient waiting & I was going a little off tangent by having a rant about the entire medical industry & its mistreatment of ME. I was surprised that he knew what ME was & that the common name for ME was CFS. He was very interested to hear about the Norway trials (maybe the dollar signs were lighting up - *cynical*)
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Kenny Banya No worries and I was just curious. In general, I think PML is extremely rare from Rituximab unless you are already immunocompromised.
     
  7. Kenny Banya

    Kenny Banya Senior Member

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    When I saw him on Friday to get my methotrexate dose increased, we discussed further about RTX.
    He went into detail about the patient that contracted PML - she was a high functioning woman in her 60s that went down hill very quickly & ended in a vegetated state before passing away.
    He said that it is still very rare in his practicing experience to contract the disease.

    I also told him about the discussions I've had with various minsters & agencies about a Phase III trial here, which looks like will not be required in Australia.

    He did know who @Jonathan Edwards was!!
     
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