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Methotrexate

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ninan, Dec 5, 2013.

  1. Ninan

    Ninan Senior Member

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    I'm thinking of trying Methotrexate. It's the drug that put Fluge and Mella on the B-cell-track and there are some stories of PWME:s getting better on it. Seems to work as an immune system modulator. But the potential side effects are quite serious.

    Anyone here who have tried it? I've seen some old threads meantioning it but not many who acctually tried it.
  2. Tristen

    Tristen Senior Member

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    I had posted somewhere about a woman who had completely arrested her me/cfs symptoms with methyltrexate. She had a website and had written a book. Apologies that I can't remember enough about her to link you up. A search may turn her up.

    I would really like to see more on this since I do believe there is an immune modulator available that would help us...and because I can easily justify their use with the related autoimmune crap I deal with. I could get a script today but am very reluctant with such a dangerous drug without more input from others.
    Last edited: Dec 5, 2013
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  3. caledonia

    caledonia

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    Methotrexate is folate antagonist (kills folate). Folate is necessary for methylation. ME/CFS is likely caused by poor methylation*. Therefore methotrexate would make already poor methylation even worse. I would avoid it like the plague.

    *Even if you don't believe that ME/CFS is caused by poor methylation, methylation regulates over 40 very important bodily processes. Methotrexate would also have a negative impact on those, and thus would have wide ranging negative effects.
  4. Ninan

    Ninan Senior Member

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    Tristan: I've read her story. Very interesting. I have lots of relatives with RA and have psoriasis myself. Not enough to get MTX, though.

    I would rather try rituximab since it has a more specific effect on B-cells, but it's much harder to get.

    Caledonia: I know. Still everything that weakens the immune system seems to make me better and vice versa.

    And since the rituximab process seems to take at least six years...
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  5. minkeygirl

    minkeygirl Senior Member

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  6. Ninan

    Ninan Senior Member

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    minkeygirl: Interesting! Please keep me posted.

    About the link, think it's the same Tristan mentioned.
  7. Iquitos

    Iquitos Senior Member

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    I remember her. Think her name is Caroline or Carolyn. Her book is fiction, with insurance companies being the villains. She was able to go back to work with the help of methotrexate but what helped her the most, if I remember right, was the antiviral Famvir. It was her experience that got me to try acyclovir (couldn't get Famvir) and that helped me tremendously with neuroimmune symptoms. (Not with energy or PEM, though.)
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  8. minkeygirl

    minkeygirl Senior Member

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    @Ninan I'm starting LDN next month with my regular doc and that works on psoriasis also so we'll see. I never worried much about my psoriasis but it went to my nails about 2 months ago and to me that was it. My dad's nails were like petrified wood and that's the last straw for me

    @Iquitos I posted the link above

    http://mysite.verizon.net/vze16suma/id10.html
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  9. Ninan

    Ninan Senior Member

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    @minkeygirl My psoriasis got worse from LDN. Not much, though.

    Just discovered psoriasis is affecting my nails too. Maybe it's time to get a proper diagnosis. (Haven't bothered before since it's exactley the same as my dad has, and he is diagnosed.)

    So, noone tried MTX?
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  10. Iquitos

    Iquitos Senior Member

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    Thanks! That's it.
  11. minkeygirl

    minkeygirl Senior Member

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    @Ninan, I'm actually going to take the LDN along with Valtrex for my viruses. If it helps my psoriasis then fine. If it makes it worse I'll see.

    But I'll check with my doc before starting any treatment since my immune system is a mess. My ME is more important than my psoriasis which flares when I'm stressed of course. My scalp is a mess.

    if I can't take the LDN, and the last time I tried it kept me up at night (the doc just started me on 4.5 and did not ease me up) then I for sure want to try the methotrexate for psoriasis and my CMV
  12. Ninan

    Ninan Senior Member

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    @minkeygirl LDN gave me problems with sleep too, but they wore off. So did the energy effect I had from LDN, sadly, after about two months. And left me with RLS. Hope it works for you this time. (I take melatonin for sleeping btw, helps a lot.)

    Please post here if you try MTX!
  13. minkeygirl

    minkeygirl Senior Member

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    I'll see with the LDN. Like I said the doc just put me on 4.5. When I start next month it will be .5 mgs and go up slowly. My doc is using it more for the viruses and immune stuff.

    My insomnia is epic. I do take melatonin but that is with other stuff. It's probably more psychological vs. actually helping me but I don't want to mess with it.

    My appt isn't until the end of January but I'll let you know.
  14. Ninan

    Ninan Senior Member

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    Great! Good luck!
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  15. Tristen

    Tristen Senior Member

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    MTX has AV (antiviral) properties? As an RN, I should known that. I can't help but think the AV effects are minimal and that she is getting more benefit from other immune actions of the drug. But hey, without more research, that's but an assumption. Certainly spikes my curiosity. Thanks.

    Lots of RA in my family too. I don't have that, but have a spondyloarthropathy that has pain and stiffness that fluctuates in severity in sync with my me/cfs flares.
    Last edited: Dec 5, 2013
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  16. Ninan

    Ninan Senior Member

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    @Tristan I think you're right. The norwegian researchers seem to think that the immune modulation, ie the effect on B-cells, is the reason for the MTX effect on ME.
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  17. Ninan

    Ninan Senior Member

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    @minkeygirl My doctor wants to try Metho. A bit excited. :) I'll keep you posted here.
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  18. minkeygirl

    minkeygirl Senior Member

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    @Ninan Someone tagged me in this which I totally forgot about. My psorisias is really getting bad and I forgot you said you said LDN made your's worse.

    I went to the Rheumotologist who wouldn't treat me because my labs were off. I went to an Immunologist/Allergist who thought it was fine but I forced her to run other tests and she did find a problem with my immune system. I was supposed to get a pneumovax challenge but she never gave me the labs.

    I had been thinking I want to try metho myself and am wondering what it will do if I have some kind of immune problem. It looks like CVID about the Immunologist thought it might be Specific Antibody Deficiency.

    Did you start the Metho?
  19. Ninan

    Ninan Senior Member

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    @minkeygirl Sorry to hear about your psoriasis. Mine got worse from LDN. It gets worse from Doxy too, and that makes me better. (Not because it kills bacteria though, I think. It works too quickly for that. But because it modulates my immune system. Allergy does the same to me.)

    I'm starting on Monday. 2,5 mg and 2,5 more every week if I don't have any major adverse effects. I've been thinking the what if-thaught too, of course. I had a weird reaction to Doxy. But I've searched the web and haven't found anyone who got worse from MTX. Lot's of people with ME take it for psoriasis and RA and the only adverse effect I heard of that could be ME-specific is that some tend to get a lot of infections. Seems to be the ones who are very prone to infections as some of us are. I, on the other hand, have not had one that I've known of for seven years, so I'm not so worried about that.
  20. minkeygirl

    minkeygirl Senior Member

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    @Ninan Yah it's bad, my legs are a mess. And now you say the doxycline made it worse? I"ve been on it for a little over 2 weeks to see if it helps the brain fog. Not sure what that is, sinus, inflammation or viruses going nuts. ( I don't remember when I noticed it getting bad, before the doxy for sure).

    What are you starting monday at 2.5mgs? Metho? I saw some people take a low dose for 8 days then take a break. How ofter will you get labs done? I think my Rheumy told me first after one month then every 3 months.

    I was looking around yesterday too and found some of the same stuff you did, that some people had no problems with it for RA, but some had a lot more infections. One reason the immunologist thought nothing was up with me is because I never have infections.

    I'm also on immune modulators which are absolutely helping me so maybe that would offset things.

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