Connect
Comment receiving replies
My pain journey began in 2017. I was diagnosed with PMR, and have been on, and off steroids since then. Never pain free, unless on 20mg. As soon as I started tapering, my pain returned. But, it was always my Rheumatologists goal, to get me off the steroids, even if I was in pain. And, no one really listened to me. I was pretty much dismissed.
3 Rheumatologists later, I am seeing a Rheumatologist at Duke Hospital.
She “thinks” I have PMR, with the possibility of something else going on. And, is concerned that some of my pain could be from Degenerative disc disease, or my osteoarthritis.
I started on injectable methotrexate, about 5 months ago. (Inflammation markers have stayed down so far). I am also on 4mg of Medrol. And, recently was put on Celebrex, with the goal being that the Celebrex will help me wean off the Medrol. Anyone tried this with success?
My concern is that my pain level is definitely increasing. And, my legs are very painful, off balance, and weak. Rib cage/ neck pain is definitely up as well.
I’m being sent for an EMG on my legs. Though I’m wondering if there’s a better test to determine why my legs are having these issues?
I have been on steroids for so many years, so I know I have to get off of them. But, for pain, they work the best, even though they are putting havoc on my body.
Hoping the Celebrex will start helping with the pain.
I feel that all these years later, I’m not much better than I was to start with.
Just more broken down.
K
Replies to "My pain journey began in 2017. I was diagnosed with PMR, and have been on, and..."
Hi @kmb181 - I know it can be frustrating when the pain is increasing and the treatment is not helping much. You will notice that we moved your post into a previous discussion you started here so that members following your discussion here will see the update to your journey.
--- PMR and RA: https://connect.mayoclinic.org/discussion/pmr-and-ra/.
I'm tagging @pacarolyn, @lloydje1, @dubecates, @nleejewell, and @kathrynmc to be sure they see your latest update in case they have any information or suggestions to share.
Connect
I sympathize with you!
I was diagnosed with PMR and took prednisone for 13 years before I was able to taper off. There were other things going on but I wasn't completely aware of those other things if I took an adequate dose of prednisone to control the pain.
Therein lies the problem with long term treatment with prednisone for PMR. Prednisone hides the symptoms of so many other problems until your prednisone dose is decreased. Even GCA is difficult to diagnose after prednisone is started.
After prednisone is taken for an extended period of time, you run the risk of adrenal insufficiency and that leads to more problems. Then you can't taper off prednisone easily until your adrenals begin to recover.
I think prednisone is good for PMR if it is taken "short term" but "long term" prednisone use did a number on me. Most medical professionals realize there are serious side effects to long term prednisone use. That is why they want you off prednisone as soon as possible.
Except for relieving all the pain, prednisone was very hard on my body. I am grateful for prednisone because it made the pain more tolerable. Prednisone gave me fast pain relief and that meant the most to me.
I don't know the solution to this Catch-22. My rheumatologist tried so many things to get me off prednisone but nothing else worked as well as prednisone to control the pain. Finally something else did work, and I was able to get off prednisone about 3 years ago. Now I'm dealing with all the degenerative disc disease, arthritis and metabolic problems.
I wish you luck with the Celebrex. As NSAIDs go, my rheumatologist thought Celebrex would be the least likely to cause GI problems while I was still taking prednisone. That was the common belief at the time. I don't know what caused the pulmonary embolism but when I needed warfarin, my rhematologist didn't think Celebrex was a good idea anymore.
I had some luck with methotrexate until my liver enzymes were too high. During my year of taking methotrexate, I was able to decrease my prednisone dose. After a year, my liver enzymes got too high.
I think leflunomide was the next thing that was tried.
I wish you well. PMR shouldn't be allowed to persist so long. If it does, there needs to be an alternative to prednisone.
P.S.
EMG's aren't much fun.