Posted , 15 users are following.
Has anyone had experience with subject drug for treating PMR? Under what circumstances? What were your objectives when deciding to use? End results? Side effects experienced? Thanks for your thoughts and comments.
0 likes, 11 replies
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amkoffee rick00953
Posted
What is a subject drug?
celia14153 amkoffee
Posted
An 's' was needed after 'drug' 😃
EileenH amkoffee
Posted
The one named in the title - methotrexate.
amkoffee rick00953
Posted
disregard my last message I get what you're saying now. My only experience is on Methotrexate and I was only on it for maybe a month or two and then I had high liver enzymes and I developed fatty liver and I had to stop it. I do not believe the fatty liver was actually caused by the methoterexate because I was on another drug that could also cause it and I was on that drug a lot longer. I'm also very overweight and when I lost 55 lb my liver enzymes dropped to normal levels. but I believe Methotrexate is used as a prednisone booster and it is not known to relieve PMR pain by itself.
gillian75478 rick00953
Posted
hi Rick. after many years on prednisolone and flare ups becoming more common( every 6 months approx) it was discussed that taking methotrexate may be a way forward. After much research and reading all input from this group I decided I would give it a try - with the knowledge I could just stop if it didn't agree with me - no weaning off required.
I have been on it now for a year. No real side effects except for extreme tiredness after about 4 months which was massively improved by increasing my folic acid to 6 days a week ( not methotrexate day).
As with everything with PMR and associated drugs I take nothing for granted as being the definitive way forward - but at present I can say I haven't flared - have reduced to 6 mg on dsns method. Have just had Total hip replacement -which they wouldn't do whilst I was under risk of recurrent flares - so at present I don't regret going on methotrexate.
Good luck with making your decision and a successful journey through PMR.
Gill
andy34717 rick00953
Posted
Hi Rick,
Timing of your question is perfect as I have just been to the Rheumy and she advised that it would be best for me to try and come off Pred and go onto Methotrexate. I am down to 4 - 5 mg of Pred a day and my Rheumy is looking for me to come off the Pred over the coming months via slow tapering and then switch to the Metx.
I am keen to also learn more about Methotrexate, but not too sure about going on this if I have successfully tapered down to zero Pred?
What has been your guidance about Metx and PMR?
Has anyone else had advice to come off Pred and go onto Metx?
Cheers, Andy
irene_88946 andy34717
Posted
I discontinued PRD on my own after starting MTX, It was a slow tapering. I had a major flare. I couldn't walk without severe pain & I had no energy at all. My ESR went up to 99. The Rhumy said she had never seen anyone with that high of an ESR. She said that the MTX had not had a chance to catch up to the prd. I was back up to 30 mg./day of the pdr. I am now down to 8 mg. after many months. The MTX has helped me a great deal. I too am very tired. Not sure if it's the MTX or just PMR. I haven't had any side effects from the MTX. So your comment about discontinuing the PRD entirely then going on the MTX doesn't jive with my Rhumy's advise. But I can testify to the fact discontinuing the pdr wasn't a good idea. Good luck!!
rick00953 andy34717
Posted
Andy
Similar--tapered down to 5mg pred had a flare and Rheum suggested I consider Methodtrexate. Not sure what she has in mind. Subsitiute? Take with Pred? Currently trying to research and get others experience.
Rick
EileenH andy34717
Posted
Anyone who can taper of pred doesn't need mtx. It doesn't replace pred for PMR - I don't care what any rheumy says. There is absolutely no research evidence for its efficacy in PMR except maybe possibly as a steroid-sparer - the studies all found different results. One, which did find it allowed a lower dose did a follow-up after about 5 years. Although patients had taken slightly less pred, the incidence of side effects of pred was no different.
If mtx worked on its own in PMR they would use it. They don't. See my other reply.
EileenH rick00953
Posted
Anyone who is at 5mg on their own does not need mtx. It is a low dose similar to the amount the body makes naturally when not on pred which has few associated problems. A recent study found that low dose pred is not associated with significant problems that wouldn't be found in an age-matched population not on pred.
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
mtx has plenty of its own nasty effects - why superimpose them on low dose pred?
EileenH rick00953
Posted
I agreed to try it to keep my rheumy happy. I took it for a month and it was awful. I had no nausea which is the usual problem but my hair fell out in clumps within days, all the so-called pred side effects I had never had appeared (hunger, weight gain, bruising and more) and I suffered increasing fatigue which was awful until I could barely put one foot in front of the other. It took some weeks to recover from that.
It does not treat PMR - for some people it MAY allow them to get the same result from less pred but there are no guarantees. It seems to work for some - I think it works for patients with one particular form of PMR or who have been misdiagnosed and actually have a form of inflammatory arthritis.