Experience with Methotrexate?

Not sure if you have commenced Methotrexate yet? I have now had my third injection - I feel pretty good day of injection i am exhausted about 3 hours after the injection and next day a little nauseous but then OK. It is a lot better than i thought it would be!

Been on methotexate for several months while decreasing methylprednisolone. Had one flare right after flu shot and covid booster but doc got it quickly under control with increase of methylprednisolone. Only real side effect which i think is from the methotrexate is lots of bruising and very thin skin so several skin tears - still
better than the PMR pains!

Pain free seems like a high-bar though I did achieve that when I first was prescribed 15 mg. at diagnosis. When I dropped to 12.5 I felt some pain, but not too much. I've heard people say you need to settle at 80% of the relief you had at first, or being reasonably comfortable. But I think you're right in that too many people taper with pain and then the inflammation just accumulates until you have a flare. It seems to be something we each have to figure out for ourselves.

I was diagnosed with PMR in Jan 2022; started on 20 mg, and went on a taper of 2.5 mg a month until 10 mg, then 1 mg a month. I had a flare around 10 mg, moved back up to 11 for a few weeks and things quieted down, then got to 5-6 mg before another flare which presented mostly in my hands (which had not been previously affected). I had trouble bending my fingers and making a fist, along with a return of mild bi-lateral shoulder pain (though so hard to separate it from partial rotator cuff tears predating the PMR diagnosis. I was moved back up to 10 mg and started a new taper schedule going down by 1mg every two weeks but at 9 mg the hand issues returned. Now my rheumatologist is suggesting that I consider going on Methotrexate and I am concerned whether this is indicated at this point in the treatment.

Is anyone on Methotrexate? Once you are on it do you stay on it indefiniely or is it tapered off ideally as well?

Are the side effects of Methotrexate worse than long -term Prednisone?

Is it premature to consider getting more aggressive; put another way, is there any clear protocol on when moving to this drug is indicated?

I read that many on this forum have been tapering for well over a year and I am only 9 months in so wondering whether I just need to be patient?

Thanks to all who can shed light on this.

Welcome @douglow, You will notice that we moved your post to the following existing discussion on the same topic so that you can meet other members with PMR who have experience with Methotrexate.

-- Experience with Methotrexate?:
https://connect.mayoclinic.org/discussion/experience-with-methotrexate/
@martiesowers, @deniseinca, @heatrey, @wv54 and others may have some thoughts on your questions and be able to share their experience with you.

Nine months is not a terribly long time for PMR unless you are the patient. I've had 2 occurrences but both were controlled by prednisone so unfortunately I don't have any experience to share with Methotrexate other than if the prednisone wouldn't have worked for me I definitely would be looking for alternatives. PMR is the pits. Have you tried making any lifestyle changes to help with the symptoms?

HI I was prescribed methotrexate to enable me to decrease and finally stop prednisone, I had a great experience with methotrexate, i was self-injecting from memory 20mg per week. I honestly would go back on methotrexate as the side effects are not as bad as prednisone overall. I developed COVID while on methotrexate i paused the injections for a week as instructed and restarted a week later. I just could not get rid of the cold and flu symptoms while taking the methotrexate, so the rheumatologist ceased the medication. No side effects at all with Methotrexate foe me other than delaying recovery. I honestly think if i had paused 2 weeks may have been a better outcome.

I started 4 pills methotrexate once a week to start reducing from 12mg Medrol. Additionally I take Actemra every 3 weeks. Things are improving. Im currently tapering from 7 to 6 milligrams. Feeling pretty good right now. Good luck in your journey.

I tried methotrexate and could not tolerate it. I vomited most days. I am now on Actemra infusions and it is a wonder drug for me. Best wishes that you find something that works. It’s a journey.

Thanks to everyone for sharing your experiences.

I have been dealing with PMR for 2 1/2 years. Tapered off Prednisone and got a flare up. Started back on 5, now down to 3 and not feeling great. My hands also are really hurting. Just got a second opinion from another Rheumatologist and I am going to stick with her. She clearly wants me off the Prednisone since it effects my blood sugars and bones. I will probably taper slowly off the 3 mg pred which doesn't seem to be helping, while on Methotrexate. Both Rheumatologists believe it is the lesser of the two evils, depending on those side effects. Just means more blood tests to monitor liver. Not easy and this pain from PMR is not something you can even describe. I take calcium pills, had Reclast infusion and stay active to protect my bones. Challenging times.