PMR and Methotrexate

[Notspeedy]

I have had PMR for just over 2 years and my CRP and ESR levels are still high even after being on prednisone at varying doses all this time. Been to see a Rheumy consultant this week who wants to put me on Methotrexate . What experiences have people had over Methotrexate. Good or bad?

[PMRpro Ambassador]

If you look at the list of Related Posts you will find a lot of previous discussion.

You say the ESR and CRP are raised despite pred - what about the symptoms? Did they improve at least 70% with the starting dose? And what is your current dose of pred? Some people just have high ESR and CRP levels but there is also the question whether this is really "just" PMR.

There are also some articles in the FAQs:

healthunlocked.com/pmrgcauk...

[ignatz]

Meths either by mouth or by injection- neither worked for me. I still needed the same dosage of Prednisolone to feel well. Having to go in for endless blood tests was a nuisance. I seem to remember that alcohol has to be reduced/ avoided which could be a sacrifice worth making if it had worked. Good luck and hoping it work for you.

[Marijo1951]

I started on methotrexate in December 2017 after I couldn't get below 25 mg pred per day without a flare of symptoms. The dosage was 10 mg per week for the first 2 or 3 months, which was then increased to 15 mg as I evidently tolerated it well. I've been taking it ever since.

The only noticeable bad effect is that it knocked me out for the day if I took it in the morning. I was too exhausted to do anything and spent the day lying on the sofa. If I take it at night, I'm fine. I set my alarm for 10.30 p.m. on Friday so that I remember to take it. I also had a problem when my rheumy increased my dose to 17.5 mg after she didn't like my blood test results - again I was knocked out with fatigue even when I took it at night. My GP advised me to stick to 15 mg and I've had no problem (and no more scary blood tests) since then.

The other important thing to remember is that you should stop taking it if your immune system needs to work hard. I gashed my leg open a couple of years ago and needed a double row of stitches. It took months to heal and I developed cellulitis, requiring several courses of antibiotics. Only after it finally healed did my GP remark that I shouldn't have been taking methotrexate while the wound was healing.

As to whether the methotrexate has really done its job as a steroid sparer, I honestly can't say. My rheumy has been happy for me to reduce pred at a rate that suits me, unlike some other posters on this site who have been persuaded into reducing too quickly. I've gone down to 4.5 mg today.

[dancersize2]

I've had PMR 4 years since diagnosis. Managed to reduce pred to 6.5 in twelve months but stuck there for another six months. Rheumy put me on MTX 10mg for two weeks then up to 20mg once a week with folic acid the other six days. Tolerated fairly well although sometimes a bit lightheaded and sometimes fatigued but it did allow me to reduce to 2.5 in the next year. and down to 1 by end of 2020. Now on .5 pred and have reduced the MTX to 15. Rheumy wants me to get right off the pred before I try to reduce the MTX further.

[katiemills]

I think , on balance , Methotrexate has helped me reduce my prednisone down to 8 mg and I’m still tapering. I was stuck at 15 mg ( having started at 30 mg). My advice is take it at night and you won’t feel so tired the next day , drink plenty of water and make sure the doctor prescribes folic acid 6 days a week , not 1 day . I started off with once a week and felt dreadful until the rheumy nurse upped my dose .Good luck!

[Coffeebeans]

I injected MTX for 9 weeks and had to stop due to fatigue.

I don't regret having tried it and I do think you need to try it to know because if it works for you, great.

But I also agree with PMRPRO. Have you had further investigations to rule out anything else? I'm fairly sure you expect a good response from pred with CRP/ESR dropping and if not, why not.

[PMR2011]

Have to ask, do you have any other symptoms besides the PMR aches? I’d had PMR for 6 years and was on 2 mg Pred when horrible fatigue hit. My markers were sky high. Only other symptom was dry cough. Turns out it was GCA. I was started on big dose Pred and symptoms and markers came down. Ended up finally on Actemra and it’s worked well for me.

[pamsim]

Hi, I do understand your concerns. When I was first diagnosed with a RA )about three years ago), I was terrified of taking any medication, it all sounded horrific, I actually refused to take oral steroids. Anyway, to cut a long story short, I was really struggling with my fingers and eventually agreed to try Methotrexate along with Folic Acid. It really has made a huge difference to me, my fingers are now ok and my knees are reasonable , soles of my feet are still a bit of a problem but on the whole I feel pretty good. It brought my CRP and ESR to within a normal range fairly quickly. I take it on an evening and the next day I do feel a bit weird, not really ill just tired and ever so slightly queasy. Small price though really so I do think it’s worth trying .