PMR and RA

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.

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.

This Dr. Only treats the RA he suggested I consult with my pcp about my other complaints

Maybe your PCP could prescribe meloxicam to help with pain from inflammation? My orthopedic surgeon prescribed it for pain recovering from hip replacement surgery. I'm off of all meds for RA and using it helps manage some flare up more so than over the counter nsaids

Thank you for the response.
It sounds like you have had quite the journey! I am sorry.😞
I am not thrilled with adding Celebrex to the mix of Medrol, and injectable methotrexate. The Pharmacist would not fill my prescription, until my Rheumatologist called and talked to him. He said it was flagged not to use with either meds I was taking. That made me worry a bit.
But, I am hoping if I can safely get off the Medrol, it will be worth it. I am concerned my adrenal glands might not kick in, after being on the steroids as long as I have been. And, going down, while already experiencing more pain.
It’s a tough disease to deal with, and it makes life hard.
People don’t understand either, when you can’t do things because you hurt.
I can’t imagine dealing with this for the rest of my life.
I have a great life, but most days struggle to get by.
I’m not looking forward to the EMG! Not sure I’m going to do it. Not a huge fan of needles, or electricity!😬
Kathy

I’m certainly not a doctor but I have struggled with RA for at least six years now. My understanding is that it’s typical to have more than one autoimmune disease and RA and PMR often go together. I don’t understand why you’ve not been treated with any of the DMARDS or biologics that sometimes can be effective.

I don't have RA so I can't speak with any experience about RA. However, I'm somewhat envious because of the number of alternatives to prednisone people with RA have.
https://www.uptodate.com/contents/disease-modifying-antirheumatic-drugs-dmards-in-rheumatoid-arthritis-beyond-the-basics#:~:text=The%20most%20common%20conventional%20DMARDs,are%20used%20much%20less%20frequently.
There are other types of inflammatory arthritis that coexist with PMR and we don't have many alternatives to prednisone.

I was diagnosed with Reactive Arthritis (ReA) with uveitis. My rheumatologist and ophthalmologist had competing goals. My ophthalmologist felt strongly that a TNF inhibitor would be optimal for me. I tried Humira (adalimumab) but it didn't seem to work well for PMR.

Actemra (tocilizumab) is an IL-6 receptor blocker and it worked well for PMR after 13 years of moderately high doses of prednisone. My ophthalmologist doesn't think Actemra is optimal for uveitis but weekly injections of Actemra seems to have prevented uveitis flares. My ophthalmologist isn't completely convinced that Actemra will prevent a uveitis flare but acknowledged that it seems to work for me.

I think TNF inhibitors are usually used for RA. What happens when a person with both PMR and RA doesn't respond to a TNF inhibitor??

In the middle of going to a new rheumatologist because of the previous one's one's disregard for an allergic reaction I developed. She prescribed hydroxychloroquine as even 30 mg Prednisone was not sufficiently controlling my PMR and it caused the skin rash feom he11. Took over a month to clear up, had to grit it out. I'm now taking Advil along with 15 mg of Prenisone as the steroid doesn't completely take away the pain and stiffness. Flareups are common. Good luck finding relief with issues.

As I read the experiences of fellow PMR humans, I am motivated to repeat something I posted last month. I urge everyone to get the book “the Wahl’s Protocol” and read page 54. I developed PMR a few months ago and resisted beginning prednisone, but it certainly resolved my symptoms once I began. As a medical professional ( I am a veterinarian), I am aware of the negative effects of pred….within 4 weeks it decreases potassium, many of the B vitamins, and interferes with Vitamin D absorption which affects calcium metabolism. It is the #1 cause of osteoporesis, 4X risk of diabetes, increases blood pressure and 2.56X heart disease. I swallowed 40 mg daily x 3 weeks, then have worked to reduce the dose and now on an alternating 10 mg /5 mg dose for a few weeks. Hoping to stop pred in a month or so. But, I have essentially eliminated carbohydrates and sugars, and supplementing with healthy oils, collagen powders, acupuncture and Chinese herbs to rebalance my immune system, and more.
I have met others who have dealt with forms of chronic disease, and those who have chosen to balance their lifestyle choices are glad they did. It isn’t always easy, but the thought of that pain returning is what motivates me to resist that tempting piece of cake.