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Methotrexate - my feedback on use

Discussion in 'General Treatment' started by Kenny Banya, May 19, 2017 at 9:48 PM.

  1. Kenny Banya

    Kenny Banya Senior Member

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    Its been 2 weeks so far & no change. 10mg.
    I was able to convince the rheumatologist for the prescription because of the rheumatic like symptoms in my fingers, but as we know joint soreness is common with ME.
    I already had an MRI of my right hand a year ago, that didn't suggest rheumatoid arthritis. It barely suggested osteoarthritis either.
    He has referred me to get MRIs of both hands, since my left is now worse than my right.

    Methotrexate typically takes at least 12 weeks for noticeable effect & the dosage is often upped around 8 weeks.

    You take a baseline blood test at the start & then another in 4 weeks, to check proper kidney & liver function while on MTX

    Other tested physical symptoms I have of ME/CFS are Postural Orthostatic Tachycardia Syndrome (20 minute standing test of pulse pressure & heart rate) & hypoglycaemia (1 hour glucose consumption blood test).
     
    Last edited: May 20, 2017 at 9:15 PM
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  2. caledonia

    caledonia

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    Methotrexate depletes folate, an essential B vitamin. I hope you're taking a folate supplement to compensate.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @Kenny Banya Is your ultimate plan to try to get Ritux approved (depending how your doctor feels you responded to the MTX)?
     
  4. Kenny Banya

    Kenny Banya Senior Member

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    Yes, 5mg folic acid tablets daily are standard requirements for anyone taking 'low dose' methotrexate (compared to high dose for cancer)
     
  5. Kenny Banya

    Kenny Banya Senior Member

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    Yes, I have already contacted Roche Australia about getting RTX approved by the Therapeutic Goods Administration (equivalent of FDA) for the new indication ME. They stated that would need the Norwegian results published first.
    My rheumatologist also would only consider RTX off label after the Norwegian results. Even then to get off label treatment requires an official application process which involves a panel at Roche making a decision - I guess so they don't get sued.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Kenny Banya Is Ritux made by Roche or Genentech? Or does it depend which country you live in? Your post above mentioned Roche so I inquired at infusion center today while getting IVIG and they said Genentech. I have not investigated financial aide program yet for Ritux b/c still hoping I will be able to get it covered by insurance. But now I am curious!
     
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  7. Kenny Banya

    Kenny Banya Senior Member

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    Genentech, in the United States, is a wholly owned member of the Roche Group
    http://www.roche.com/investors/updates/inv-update-2017-03-24.htm
     
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  8. Kenny Banya

    Kenny Banya Senior Member

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    The other benefit is that Roche supports Phase III trials (ie: funding)

    I know it is asking more of you, but you should contact Genentech (Roche USA) to discuss getting a Phase III trial happening in the USA. It is mindboggling that the USA, which has a GDP nearly 50 times that of Norway isn't the one undertaking the Phase III trial. Our collective hats should be taken off to the Norwegian government.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for this info!

    Agreed and I feel very grateful to Norway for the Ritux study and to Germany for the Cell Trend autoantibody tests. I have no expectation that the U.S. Govt is ever going to do anything (vs. private institutions like OMF are going to solve this in the end).
     
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