PMR and Methotrexate

@jj8431 - I am glad you can start your comment by saying "HA!'-- this turn of events is amazing And certainly a doctor's worse nightmare ! I recall reading a few other commenters on this thread who were misdiagnosed. GOOD Luck - I hope you have success with your chemo treatments ! - Maria

My doctor is recommending Methotrexate. I've done a lot of research on this drug. It says you can't take Prilosec which I take daily. I've had Mohl's surgery and many skin lesions frozen off. It says it can cause cancers. I had breast cancer in 2013. I have an ulcer and a hiatal hernia. All the side effects really scare me. Has anyone tried leflunomide? It's the second choice of treatment but has fewer side effects. I've tapered down to 5mgs, and my pain is back. I just want to wake up one day without pain! Any suggestions would be appreciated.

Thank-you. I am sure hoping it goes that way...so far, so good! Jeanne

I was diagnosed with RA affecting both my hands, 2 month after after being diagnosed with PMR. My Rhumetolgist started me on 20 mg Methotrexate. No more pain in my hands. He explained that the Methotrexate will make coming down on Prednisone easier. I'm down to 1.5 mg Prednisone. Still have stiffness in my theighs, but eases once I start moving. Once off the Prednisone, will then work on getting off the Methotrexate.

Please someone respond to this post. TIA

@besmith57 - Sorry your post got missed but there are a lot of other members who have asked questions and shared experience with leflunomide. Here is a link showing the discussions and comments by other members that you might find helpful - https://connect.mayoclinic.org/search/?search=leflunomide

You mentioned your doctor is suggesting Methotrexate. Have you discussed your concerns of the side effects with your doctor and the possible alternative?

Good morning @besmith57 - I'd like to tell you about my PMR-friend who just returned from visit with his Rheumatologist, and because of your post I did a bit of searching around re: PMR and MTX(methotrexate)
BUT first -
ON March 3rd you wrote :
"I was diagnosed with PMR a month ago after excruciating pain to the point I had to get my walker back out from my lumbar fusion. I will be weaning off from 20mg to 15mg on Wednesday. I know I have to get off prednisone because of my osteoporosis. "-- yesterday you said you were at 5mg and "pain returned"-- pain AND stiffness ? exactly like your initial onset ?
IMO- This seems pretty fast developments in only 3.5 months, particularly your tapering ! Have you had follow up blood work ? Did you ever have 100% relief from symptoms with your initial dose ( 20mg? - I did not and had my first flare-up - my rheumatologist increased to 30 mg and have tapered down to 3 mg /day in about 11 months) . There are many in this forum who might advise you to be "more patient".

May I ask where do you live ? someone reported that in Australia patients must try MTX before they are "approved " for biologicals. If you live in USA - did you get a prompt appointment with a Rheumatologist ?

Anyway my friend ( has been relapsing for last 3 yrs ) had a discussion about KEVZARA with the rheumatologist and he will just try again to increase Prednisone to 7 mg/day and taper again to 5mg/day - steroid sparing seems NOT to be the priority for him ! And the cost of KEVZARA was a sticker shock !

If VERY QUICK steroid sparing is a priority for you --In 2023* an international study stated : "In addition, high-quality evidence is lacking to support routine concomitant glucocorticoid sparing treatment with methotrexate, and given the limitations to use this drug in older adults with restricted renal function, new treatment options are needed for people with PMR. " so I agree with @johnbishop about further discussion with your doctor.......
If you'd like to get into a IL17 trial for PMR ( sponsored by Novartis) - maybe you can try that . It is recruiting still I believe ......https://www.novartis.com/clinicaltrials/study/NCT05767034

*I will attach my notes about MTX . You'll be pain free I bet someday soon : )

Thank you so much for your response and all the information. I actually started at 40 mg from my GP. When the rheumatologist found that out, she immediately put me on 20mg. I thought the prescription was 20 mg a pill, but it was only 10mg. So, dummy me was only taking 10 mg a day. The 40 mg helped my pain immediately. The 10 mg kept the pain away also. I live in the USA. I spent an evening in the ER because it caused terrible eye pain and tearing problems. I saw an ophthalmologist and I guess I am tearing a layer off my retina when I sleep so now, I use daily drops and ointment at night. My flare-up is really affecting my shoulders and starting into my hips. I had blood work done on Tuesday and my markers are still elevated. I am kind of disappointed that my rheumatologist hasn't gotten back to me yet, I had bad osteoporosis that I finally got back to osteopenia so being on steroids is a big problem for me. My osteoporosis was so advanced that the neurosurgeon wasn't sure I was a candidate for a double fusion. I'm not sure about a clinical trial. With my luck, I would get the placebo. LOL I guess I need to get back in contact with my rheumatologist again. I don't think I'm a candidate for methotrexate because I take Prilosec and have an ulcer. I really appreciate all your input.

John, thank you for getting back to me. I know there are a lot of people on this site. I find this site very informative. My rheumatologist mentioned methotrexate during my virtual visit on Tuesday. I hadn't researched that drug until then. Sounds like both drugs have pros and cons. I will reach out to her today. My blood tests came back with elevated markers again. She was so on it in the beginning but like this site, I know I'm not her only patient. Thanks, again.

Wishing you full and successful recovery. I'm trying to figure out how this was diagnosed as PMR. Sounds like you had bone and joint rather than muscle pain. Was your pain bilateral?
Wow. I guess the pred helped so that was all the docs had to hear. Thankfully you took this into your own hands. Very best to you on your journey to excellent health.