Methotrexate Update

[suelm]

I was prescribed MTX a year ago, about 18months into my PMR journey, I reluctantly followed my Rheumatologist’s instructions and in October reported back to him with details of nausea, 3 days a week of pain, inertia and depression and a prednisone journey of 1mg reduction per month. I asked if I could stop the MTX and was told no, I could have more folic acid and injections, I refused the injections, it seemed like bullying for non compliance, he said he would make an appointment for 4 months when he expected me to be on 3mg from the 10mgs I was on!

The side effects continued, I contacted the nurse to say I wanted to discontinue and she said I could reduce the pred by half every 2 weeks and I must continue the MTX if I wanted to get better!

I have had no more contact from the Rheumatologist, have stopped MTX, am on 5mg after 2 1/2 years reducing by half a month, am able to walk every day, loving the hot weather and am no longer spiralling down into depression. MTX did not suit me and as I was not listened to I took matters into my own hands!

[Koalajane]

well done, because after all it is your body!

[autumnlass]

Well done! 🙂

Physician heal thyself came immediately to mind! Enjoy the Summer! 😀

[PMRpro Ambassador]

Well done - I found MTX made my pain worse ...

The rheumy was being pig-headed in the face of all the evidence ...

[Wonderfullifeandmore]

oh dear not being listened to seems to be the norm these days unfortunately unless you get lucky with your practioner.

[SheffieldJane]

I would have done the same and my Rheumatologist would have accepted it with grace and understanding.

[Coralfluxx]

Interesting narrative, suelm! I rather feel like you about MTX. 18 months in and it is sort of working but feels like a blunt instrument with so many side effects. It took me 8 months to ease into it. The experts never talk about tapering in or out of it, but like you, I suspect there may be value in trying that. The folic acid seems like a sop to me. Symptoms? Increase the folic acid. It makes no difference as far as I can see for me. Also they are very keen on injections of MTX now. Iw order if there is a financial driver for that. (Or maybe I am just a conspiracy theorist!)

[PMRpro Ambassador in reply to Coralfluxx]

If it wasn't doing anything after 18 months and made me feel rubbish, I'd politely say no!

[GucciPaddy]

I’m afraid I have no knowledge whatever of MTX only Prednisone! You certainly appear to have very bad experience using MTX. Good for you that you took matter into your own hands and seemed to have been successful. I wish you the best going forward.

Regards, Paddy

[phebamom]

I was told years ago that Methotrexate does not work well for PMR. I took it one time and I thought I was going to die. It was peeling off layers of intestine. I have a wonderful rheumy who told me I would be on 5mg. prednisone rest of life. I don't know why doctors are so quick to take people off prednisone. The drug does have long term side effects, but so does the chronic system wide inflammatory process caused by PMR. Good for you for being your own advocate. Listen to your body.