Methotrexate

[Frost111]

Hello community,

Has anyone tried methotrexate for myositis or a similar immunosuppressant? How did it work out for you please?

Thanks

[Nearness]

Hi Yes I was on Methotrexate for about a year or two. First on pills then changed to subcutaneous injections. I had no adverse reactions but Methotrexate did not seem to work for me in controlling the Myositis and my CPK values continued to rise. I am now on Cellcept.

Best Regards

Nick

[SoonToBe]

Was on it for six months and whilst it slowed progression of NAM gown it did not stop it. I was switched to IVIG and Rituxan which we are still assessing the impact of. I tolerated it well with no side effects

[immandyflyme]

I took it orally (25 mg once a week) for two years. It took about 2 months to get used to meth; by used to, I mean not feel dreadful and nauseous for two days after taking it. I feel like it may be associated with hair thinning but that could have been the dermatomyositis too.

The meth did stabilise my condition.

My advice is to take it in the evening with food and that helps to cope with any side effects.

[Frost111 in reply to immandyflyme]

Thanks for the reply. May I ask why you stopped it?

[Goat_lover]

hi, I used methotrexate for 3 years. First I took injections but then I switched over to pills. I had a lot of side effects with this medication. I would always feel nauseous like I had to puke. It got so bad that even seeing something yellow substance would make me gag. After not taking it, I got sick again and then I finally got my doctors to switch to something else. Now I use cellcept and I am very happy with this. I don’t have any side effects anymore and I’m starting to get better again. (I will say the methotrexate did work well for my dermatomyositis but the side effects weren’t worth it)

[GT08]

Hi, I have been on methotrexate and steroids since April. For the first couple of weeks I didn’t feel that great (I felt like I was drunk quite a bit) but after that I have been fine. Steroids have decreased and methotrexate increased and luckily I still feel ok. My bloods are better! I hope everything goes ok for you x

[Institches]

Hello I was diagnosed with NAM 3 years ago and was initially taking steroids then Methotrexate for the last 2 years as the steroids reduced, and for the last year the Myositis has been in remission. I still get very tired and need to pace myself. I try to walk at least 4 times a week to keep the .muscles I have left working. I have very dry skin and thinning hair which I suspect is due to the methotrexate but no other side effects . I take it an hour before food as recommended.

I hope it works for you.