PMR and Methotrexate

Hi @amom7, I'm not sure I've dealt with PMR the longest. I had my first occurrence in 2007 which lasted 3 years until I was able to taper off of prednisone. It was dormant for 6 years and came out of remission in mid 2016. I was back on 20 mg of prednisone and it took me about a year and half to finally taper off again so it's been in remission since early 2018.

Hope you don't feel too down. It can be a bummer but I think if you are able to adjust your lifestyle a little, stay somewhat active and realize that it can be a long road you can get better. I'm by far no expert and have no medical background or training but I do think you have to sometimes push through with a little pain...not talking the big hurt, just some minor aches. It's great that you are down to 5 mg dosage. I never took methotrexate so maybe that will help you.

Have you done any changes to your diet to try and help with the PMR? I think one of the things that helped me on the second occurrence was changing my diet to reduce as much of the sugar as possible and less meat, especially red meat (not that I don't like it!). My first bout with PMR I gained a lot of weight, probably 60+ pounds so I made some changes the second time I was diagnosed and was able to keep the weight gain to between 5 and 10 pounds back and forth. I think the more weight your carry around the worse it makes the disease and causes you to become more inactive which really hurts you.

Here's an article I found that I hope might help.

3 Strategies for Coping with Polymyalgia Rheumatica (PMR)
-- https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Thx for article. Some useful ideas there. Am having to sort out what is pmr and what is methotrexate/ folic acid side effects. Info says side effects are worse in older people (That’s me. 🙂. ) Fatigue, low energy, no appetite, and, yes, the constant aches, etc. Thankful that the severe pain is gone. I lost 12+ pounds ( was already normal weight ) with pmr. Never regained. Was a 1and 1/2 mile per day walker before all this. Now I dole out energy. One activity per day. Just hard to accept this new me. Such a life altering disease. So helpful to be heard by others who understand and who share their experience. Guess I needed to hear that there is a light at the end of the tunnel.

Forgot to ask. Do others here use a pain reliever like Advil, etc. ? So averse to taking another med, but have started to , maybe one tab a day, three times a week, as it helps.

My physician says there is no harm in me taking Tylenol, cannot take Ibuprofin. Occasionally I will take a couple before I go to park with dog, but so far do not notice any difference

Wanted to post a positive for you about methotrexate. The side effects I spoke of occur for about 2 days after dosing. The rest of the week is okay. It definitely has let me reduce the prednisone.

Just starting down the path to reduce pred levels with introduction of Methotrexate. Not sure what to expect. With no gold standard investigation, it’s all us chartered waters. .

I am also at the same point. I had started at 20 mg of prednisone and was self tapering at the urging of my primary who seemed absolutely paranoid about prednisone. I was going down 1 mg a week until I hit 14 mg and then tried to swim which caused my shoulders to howl and bark and forced me back up to 18 mg; so a waste of 6 weeks of hard work. Then I finally had an appointment with a good rheumy who knows her stuff. She assured me that 20 mg was fine, added methotrexate and told me that the labs would dictate when I taper. Two weeks at 20 with the MTX and I feel great. The point of all of this is to let the science (SED and CRP) control the tapering; not some artificial and arbitrary schedule where "one size fits all". Good luck and lets compare notes as we continue this journey!

Will do. Medicare kicked back my rheumatologist’s first Rx order for mtx. Did you have any issue with your insurance carrier covering the cost of the drug?

No, no issues with insurance and all I have is a Medicare advantage HMO which I have learned is the worst kind of Medicare policy to have. What do you have? I am looking into buying a Medicare supplement plan when my plan year ends even though it will cost $300 a month more than the Medicare advantage plan. What is your current prednisone dose? My rheumatologist prescribed the injectable methotrexate which I can do myself once a week. The injectable has much fewer side effects.

Hello @wayneo and welcome to Mayo Clinic Connect. I am glad you are being proactive in reaching out to learn from others as you start down this journey.

You will notice that I have moved your post into an existing discussion on PMR and Methotrexate. Member @jcaffrey47 has already responded, which is great!

When were you diagnosed with PMR?