Methotrexate

[gtate1914]

How many on this forum have used or are still using methotrexate either in pill form or injections? Do you feel it has helped or have you given up on it because of side effects?

[Primarose]

askapatient.com has that one listed as well.

[gtate1914 in reply to Primarose]

Thanks. Rheumy wants me to do both, trying to weigh pros and cons. No clear answers for sure.

[gtate1914 in reply to Primarose]

I notice the methotrexate was not taken for GCA and results not that great.

[PMRpro Ambassador]

I gave up very quickly because of side effects - the fatigue was so awful I couldn't face waiting to see if the other things improved. I felt worse than I did with untreated PMR! Aches and all...

[GerriMc]

I use it. It was very successful in getting me passed 17.5 mgs Pred. Not much in the way of side effects for me. A friend recommended taking it last thing at night so the tiredness was negligible as I slept through it. In fact the night I take the MTX is often the best sleep I get all week.

[gtate1914 in reply to GerriMc]

Do you also have GCA? At what dosage of prednisone did you start the methotrexate?

[GerriMc in reply to gtate1914]

No, I did have some temporal soreness but not much. I had tapered from 20mgs to 17.5 of Pred. I couldn’t get down past that and was weeks trying to get down to 15 with no success. I thought long and hard about taking MTX and my Rheumy said I could just stop it if I had problems with it. I had a little more hair loss for a while but that settled down and a bit of fatigue which taking the MTX at night sorted.

[PMRpro Ambassador in reply to GerriMc]

My fatigue lasted all week - improving on Friday evening when I was due to take the next mtx dose on Sat evening/Sun morning. A day of fatigue would have been acceptable but it was getting worse not better.

[GerriMc in reply to PMRpro]

Aw that’s awful, I can see why you wouldn’t take it. It seems to effect everyone differently.

[Linny3]

I took it for over a year. Lots of hair falling out. Some stomach upset. Went to the injection instead of pill form and that helped with stomach upset. Lots of mouth sores. Folic acid helped some with the side effects. I got down to 6mg of prednisone but then had a giant flare. That was before I found this forum. I understand now that I did the taper all wrong. I decided to go off of the methotrexate. I just couldn't take the mouth sores and hair loss any longer.

I was told it works best if it is taken at the very beginning of treatment with prednisone.

I am back up to 11-12mg of Rayos and having trouble tapering any lower.

Good Luck

[gtate1914 in reply to Linny3]

Do you also have GCA? How did you do your tapering? Thanks.

[Linny3 in reply to gtate1914]

No I don't have gca. I have Fibro and Pmr

[Marijo1951]

I started on methotrexate just after Christmas because I had a second severe flare on tapering to 25 mg of pred. I've been able to reduce further since then without problems, so assume the meth is working for me. The only side effects I suffered were diarrhoea which reduced when my rheumy increased my folic acid from one day to five days per week, and extraordinary fatigue when I took the meth in the morning. I had thought it wasn't possible to feel even more tired than I already did, but proved myself wrong. I solved this by taking the meth at night. I set my alarm for 10 pm every Friday to remind myself.

[GerriMc in reply to Marijo1951]

Same as me. I take FA 6 days a week.

[Cally55]

I took it for about 2 months because of side effects of pred, sepsis cataracts and now osteoporosis, but according to rheumatologist it didn't agree with me. The mouth problems went after about 4 weeks but the gut ones didn't. I do have diverticulitis which probably does help. Also I felt light headed as if drunk, probably the tiredness. The diverticulitis kicked off as well at the same time, possibly coincidentally. Took about a month to recover, then tried leflumomide, I lasted about a week on that and took 2 to recover. Along the way had a bit of a flare and am now on more pred than when I started!

Methotrexate seems to be a "marmite" med either it works well or not at all. Hope it works for you.

[gtate1914 in reply to Cally55]

Do you have GCA? I took methotrexate about 3 months, didn't seem to help, maybe it would've in time. I have not been able to reduce my pred, I think I've never been at the proper dose to take care of the inflammation and always about day 7-9 symptoms of head/temple/eye ache and scalp tenderness come back. Rheumy focused on tapering not containing the inflammation. It just doesn't work. I don't know my effective dose. Now at 50mg at her instructions. Day 4. May go to methotrexate injections as a last ditch effort. Been too long at high dose.

[Cally55 in reply to gtate1914]

Probably GCA, consultants can't agree. Diagnosis not helped by having to wait 5 weeks to see rheumatologist in the first place, by then been on 40 mg from gp and eye casualty. Second opinion got privately said yes GCA, prof of neurology said strong probability and vonsultants at hosp which didn't manage a biopsy dither, although now have referred me to regional specialist. This was feb 2016 now got to 14mg pred, been there since last october so really want to kick it! Spent most of first year at about 20 - 30 mg, with one bizarre month at 40mg (rheumies idea not mine) after a year to see if it that would solve it, it didn't but I did start to halucinate! Rheumies were still suggesting tapers of 5 or 2.5 mg then which as this forum tells us really does not work.

[daw50]

I have GCA and have taken Methotrexate (pills) for 6 years with no side effects. Stopped twice during that time; once for two weeks due to a raised liver count and the other for 10 weeks pre/post a Total Knee Replacement.

[gtate1914 in reply to daw50]

At what dosage when you started methotrexate and where are you now? I took it for 11 weeks, had stomach issues and a lot of bruising, but am going to start again in hopes it will help. I'm going to do injections.

[daw50 in reply to gtate1914]

I started on 7.5mg (3) pills and had fortnightly blood tests whilst the dose was increased over a number of weeks/months. I take 20mg (8) pills once a week and 5mg of Folic Acid once a week but not on the same day as I take the Methotrexate. I have a blood test every 8 weeks. Hopefully the injections will be better for you.

[gtate1914]

I'm glad it seems to be working for you; evidently you've been able to reduce your pred.