The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Methotrexate - my feedback on use

Discussion in 'General Treatment' started by Kenny Banya, May 19, 2017.

  1. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    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
  2. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,213
    Cincinnati, OH, USA
    Methotrexate depletes folate, an essential B vitamin. I hope you're taking a folate supplement to compensate.
     
    Sancar likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,959
    Likes:
    22,177
    USA
    @Kenny Banya Is your ultimate plan to try to get Ritux approved (depending how your doctor feels you responded to the MTX)?
     
    MEMum likes this.
  4. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    Yes, 5mg folic acid tablets daily are standard requirements for anyone taking 'low dose' methotrexate (compared to high dose for cancer)
     
    MEMum likes this.
  5. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    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.
     
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,959
    Likes:
    22,177
    USA
    @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!
     
    Sancar likes this.
  7. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    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
     
    Sancar and Gingergrrl like this.
  8. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    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.
     
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,959
    Likes:
    22,177
    USA
    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).
     
    MEMum and Pendergast like this.
  10. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    So I am over 4 weeks in & after my 4 week blood test showed MTX had no effect on my liver or kidneys, I can now increase the dosage to double - 20mg. I had no side effects during the 4 week period.
    Typically there is no benefit in the first 4 weeks, probably because you are given a low dose to ensure there is no effect on the liver/kidneys. It usually takes 12 weeks to see any benefit for rheumatoid arthritis, not sure what the period of time is for ME/CFS due to the scarcity of information.
    Pertinently, I currently & have never shown significance on any of the rheumatoid/inflammation tests which include:
    1) Anti-CCP
    2) Rheumatoid factor
    3) C-Reactive protein
    4) erythrocyte sedimentation rate
     
    MEMum, Invisible Woman and Sancar like this.
  11. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    I am not sure I can attribute it to MTX, but I have improved in the 3 weeks since I went on the full dose.
    I take less than 1 hour to 'wake up' after waking up, rather than 2 to 3 hours.
    I have more energy throughout the day.
    I now regularly have 5/10 & 6/10 energy level days, whereas previously I would regularly have 4/10 & on one occasion 3/10 (3/10 = 24 hours in bed). Yesterday was 6.5 & close to the way I was from 1992 until 2016 at 7/10 & able to work. My life prior to 1992 was 10/10.
     
  12. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

    Messages:
    69
    Likes:
    92
    USA
    Great news @Kenny Banya! Thank you for the update! You are moving in the right direction:rolleyes:

    What is the "full dose"? as compared to the 10 mg you reported taking May 19th? Is this IV therapy or IM? So great you were able to convince your rheumatologist to prescribe! I can relate to your 3/10 to 7/10 abilities- or lack there of. So good to hear positive results from MTX since it's readily available.
     
    MEMum likes this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,959
    Likes:
    22,177
    USA
    Agreed @Kenny Banya and I am glad that you are experiencing improvement as well. That is great news!
     
    Sancar and MEMum like this.
  14. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    Thank you. But I am not holding breath, as it could be placebo (hope bias) or an unexplained spontaneous improvement that ME/CFS is renowned for.
    The full dose is 20mg of tablets every Monday.
    Today has been a 6/10, again.

    MTX works on T cells, RTX on B cells
     
  15. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    Well, this past week starting Monday 10th has been shit. Yesterday was 4/10 in bed all day.
    3 weeks prior from June 19th were an improvement
     
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,959
    Likes:
    22,177
    USA
    I'm sorry to hear that. Do you think it relates to the MTX, or another factor, or something random?
     
    Sancar likes this.
  17. Old Bones

    Old Bones Senior Member

    Messages:
    800
    Likes:
    4,761
    CANADA
    @Kenny Banya I have watched this thread with interest, as an ME patient also diagnosed with RA based on blood tests, x-rays and symptoms. I have not responded until now, hoping your MTX trial would follow a different path than my experience with respect to ME.

    I've been taking MTX continuously for seven years -- a starting dose of 10 mg, increased to 15 mg for a period of time, and currently 12.5 mg per week. I had almost completely lost the use of my hands, and MTX has been a miracle medication in this respect. So far no side effects, and my bi-monthly blood tests show no liver or kidney damage.

    I was really hoping the improvements you reported in your ME/CFS symptoms would last. I, too, experienced a remission of sorts during the first two or three weeks on MTX -- more physical energy and endurance. But, the improvements were short-lived.

    You mentioned in an earlier post that you are "not holding breath, as it could be placebo (hope bias) or an unexplained spontaneous improvement that ME/CFS is renowned for." Based on my experience, your improvement after starting the MTX was probably not the placebo effect. I had no expectation that this medication would improve my ME, yet it did for a short time. Similarly, I had every expectation that the improvement would last, yet it did not.

    I sincerely hope your worsening since Monday is the anomaly, and that you are soon back to the 5-6.5/10 you enjoyed for that brief period of time, or even better. But if not, perhaps your experience with MTX, and mine, provide another piece of the puzzle. And, perhaps this means that our bodies aren't as permanently broken as we might assume, but merely "stuck", and resistant to returning to a more healthy equilibrium.
     
    Sancar and Gingergrrl like this.
  18. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    283
    Likes:
    470
    Australia
    Thank you for your feedback & its looking like you might be right.
    The last 3 weeks have been back to the way it was prior to taking MTX.
    Week 12 starts Monday (week 8 of the full dose) & I am willing to give it 14 weeks, but really at such a 'late' stage, its unlikely to change.
    My MRI report on both hands & wrists came back & they show no evidence of inflammation & hence RA. They barely show any evidence of OA either!!
    Hence, I think the only logical conclusion is that the finger & wrist joint soreness in both hands is ME/CFS/FM.

    Not sure if there are any peer reviewed trials of MTX for FM.
     
    Sancar, Gingergrrl and Old Bones like this.
  19. Horizon

    Horizon Senior Member

    Messages:
    222
    Likes:
    291
    I took Methotrexate for Crohn's disease and it raised my liver enzymes. No effect of ME for me.
     

See more popular forum discussions.

Share This Page