Views on Methotrexate

[Pym1]

A good friend who also developed PMR about 18 months ago is very keen for me to see his consultant. He wasn’t getting far with Pred but is now on methotrexate plus folic acid. Pred now down to 2 (dream on) and he swears his new man knows a lot more than your ‘average GP’. I LIKE my GP but I’ve seen this drug mentioned here as well. Any comments.

Thanks

Pym

[DorsetLady PMRGCAuk volunteer]

Hi,

Well one would hope his consultant knows a lot more than the average GP - after all it is his speciality.

Personally never been on MTX, but it seems to get mixed reviews, many find it really helps, others cannot cope with side effects. Sure you will get plenty of answers, but might be worth reading posts already on forum - listed under Related Posts.

The acid test I guess is to try it yourself and see.

[Pym1 in reply to DorsetLady]

Thank you. I’ll do that.

[Marijo1951]

Hi, I hope you won't mind me copying and pasting (below) for the second time a reply I sent to two recent posts regarding my own experience of methotrexate. I know many people have nasty reactions but I have evidently been lucky.

I can only give my own experience of MTX. I started on 60 mg pred per day on 31st July 2017. On two occasions I had bad flares of GCA symptoms when trying to reduce to 25 mg. The second time, just after Christmas 2017, I was prescribed MTX . The initial dose was 10 mg per week, plus one tablet per week of folic acid. This was increased a couple of months later to 15 mg per week plus folic acid on 5 days per week. I go for a monthly blood test to make sure my liver is okay. I've now been taking MTX for just over 13 months without any terrible side effects, and I feel it probably has helped me to reduce pred as I haven't had a sign of a flare since.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

That’s good.

[PMRpro Ambassador]

I tried it to please my rheumy - I gained weight and noticed other things that would often be ascribed to pred, things I have never had before with the type of pred I take. I had joint and muscle pain. After a week or so the fatigue started and steadily got worse until I could hardly put one foot in front of the other. I didn't suffer any nausea - but my hair was coming out in chunks. I stopped taking it after a month - I had already agreed a break with my doctor as I had a working trip to Seoul, and didn't start again. I couldn't have managed the trip while still on the mtx. It took a couple of weeks for the fatigue to improve and a couple of months for other things to go - the weight is still there!!!!

It might help, it might not. You might have side effects, you might not. The only way to find out is to try.

[Pym1]

Helpful. I’ve got enough ‘issues’ without inviting more. Think I’ll try to keep reducing the devil I know until 2 year anniversary in September, then have another think. Thanks

[piglette]

If you have only PMR there is no reason not to just stick with your GP who seems to be doing a pretty good job. A large number of people with PMR never see a consultant. Methotrexate does seem to help some people while others say it does nothing and also complain about the side effects. Out of interest is your friend’s consultant private?

[Pym1 in reply to piglette]

Very much private, I understand. Many thanks for your response.

[Telian]

Your decision - you have to do your research and decide - depends how bad you are now and weigh up the consequences. No one knows the answer. My philosophy is if in doubt don’t do it - you can always change your mind - if things get too bad your could see your friend’s consultant as a private one-off for a second opinion.

[Pym1 in reply to Telian]

Thanks for your response. Very helpful.