No remission after three years

Hi @ carlarosie, I am so sorry to hear that you have continued to have daily PMR pain with no remission. I have also been diagnosed with GCA & PMR along with degenerative disc disease. My PMR/GCA diagnosis was a little over 4 years ago and still no remission for me either. I think the daily PMR pain is tough but other joint issues make this all a little harder to deal with.

I still take both Actemra & prednisone but Actemra has helped me to reduce the prednisone without my inflammatory markers going back up—so I am very thankful but hurting is just no fun! I think that most of us look forward to remission and anticipated this disease to resolve in about 3 years but I think it just has to run its course and that apparently varies widely. Praying that we can all get some relief soon. I know that nothing I have said helpful but I am praying that you know that you’re not alone. Best of luck!! ❤️

I have been on and off prednisone for 35 years, mostly on. Now on Kevlar, but can't get below 2.5 MG prednisone.

@carlarosie

Having two autoimmune conditions gets complicated. It might be that PMR is in remission but Sjögren's syndrome is still active. Many people with Sjögren's also have overlapping rheumatic diseases.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8068384/
----------------------------
I have multiple autoimmune conditions too. All of my autoimmune conditions are being managed but I don't ever expect to be completely pain free again. One autoimmune condition is called Reactive Arthritis (ReA) which is an inflammatory arthritis that damaged my spine and resulted in severe spinal stenosis. The structural damage and narrowing of my spinal canal causes me to have pain and mobility issues. I have already had both knees replaced. Some other orthopedic surgeries on my spine are "pending."

Another autoimmune condition I have is called uveitis which can cause permanent vision loss. My uveitis is currently in remission . Actemra isn't optimal treatment for uveitis so my ophthalmologist said it is only a matter of time until my next flare, After more than 30 flares of uveitis, I know that 60 mg of Prednisone will be needed again.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
---------------------------------
Technically, I still have PMR, It has been about 18 years since I was first diagnosed. I do a monthly infusion of Actemra which allowed me to taper off Prednisone about 6 years ago. Actemra treats PMR or at least that was why Actemra was started. The old definition of PMR remission was when a person tapered off Prednisone. I tapered off prednisone so I guess that qualifies for remission. Medically, however, this only qualifies me as glucocorticoid-free remission rather than complete disease remission.

Having "no pain" should NOT be the criteria for remission. I still have pain but it is nothing like the pain was when PMR was active.

PMR and Sjogren's disease is a tough combination. I don't think Actemra will work as well for Sjogrens's as it does for PMR. Studies have shown that Actemra does not significantly improve the symptoms of Sjogren's which can also cause significant joint and muscle pain.

Conclusion: Among patients with primary Sjögren's syndrome, the use of tocilizumab did not improve systemic involvement and symptoms over 24 weeks of treatment compared with placebo.
https://pubmed.ncbi.nlm.nih.gov/33208345/
---------------------------------
It has been 35 years since my first autoimmune condition was diagnosed. That was when I had my first taste of Prednisone. It was a bitter pill to swallow. I'm so happy to be off Prednisone. I still have pain but perhaps, for me ... it is as good as it gets!

I've been on Actemra since January 2025. I began taking the infusions, when I had flares when trying to taper below 10 mg. of Prednisone. The Actemra allowed me to taper off completely, in November 2025. About a month after I finished my taper, I developed severe pains in both knees, shoulders, wrists and thumbs. It was a different pain than PMR/GCA pain. My rheumatologist has determined that I have osteoarthritis. I informed him that I never had these aches before PMR/GCA. He said osteoarthritis doesn't usually 'show up'. I asked if my Prednisone usage damaged my joints and he said it possibly did.

I've been on 400 mg. of celebrex, daily. I get some relief, but my knees and wrists/thumbs are still pretty painful. Rheumatologist wants to prescribe something different. I have an appointment with my Ortho this week. I told him that I will wait to decide on the prescription, based on what my Ortho says.

Sorry, you are going through this. I feel your pain.

@ropnrose

"My rheumatologist has determined that I have osteoarthritis. I informed him that I never had these aches before PMR/GCA. He said osteoarthritis doesn't usually 'show up'. I asked if my Prednisone usage damaged my joints and he said it possibly did."
-------------------------
Just my opinion because I don't really know. I think we all have some osteoarthritis at the age we are diagnosed with PMR whether we feel the pain or not ... I certainly did.

I had very severe osteoarthritis in my right knee from a sports injury during high school. I was told that I needed a knee replacement before the age of 30 but I had to wait until I was 60.

My right knee was already deranged but the mystery was how bad my left knee was when it was replaced. I actually had my "good" left knee replaced before my "bad" right knee. Both surgeries were done during the height of my PMR diagnoses when I was still taking 30 mg of Prednisone. My orthopedic surgeon basically said the same thing as your rheumatologist. He said both my knees were so bad that "wear and tear" arthritis couldn't explain it all. I knew how bad my right knee was but I always called my left knee my good knee. My orthopedic surgeon said chronic inflammation would explain it but Prednisone didn't help the situation because of how it destroys connective tissues.

Artificial intelligence seems to agree:

"The Prednisone Paradox: While high-dose Prednisone is critical for knocking down the systemic inflammation of PMR, it comes at a cost to your musculoskeletal system. Glucocorticoids are known to inhibit collagen synthesis and weaken connective tissues, accelerating structural damage in joints that are already under stress."
-------------------------------------------------
Both my knees had severe osteoarthritis in addition to severe osteoarthritis of my spine and everywhere else they look since I tapered off prednisone. Having that much arthritis might only be explained by wear and tear AND chronic inflammation AND prednisone.

@ropnrose I have osteoarthritis in my knees and shoulders. I have had rotator cuff surgery in both shoulders, fully recovered. My knee ortho treats my OA with gel injections, i.e. hylaronic acid, It is not approved in the US for shoulders so I private pay to have my shoulder ortho give it to me. The other option is steroid shoulder injections. I have no idea what they would do for wrists. I would want a hand surgeon to advise me.
I hope you get the relief you deserve. Steroids provide OA pain relief for me, not so with the biologic. I've noticed everytime I taper my OA pain comes back around 10-8 mg prednisone. I had to quit biologic since it caused diverticulitis. I'm post Tyenne and pre- what's next. I hope you find the Goldilocks solution fit for you.

I'm definitely going to ask my Ortho about hylaronic acid injections for my knees. Hopefully, she'll have suggestions for my wrists. I have mad respect for her. She diagnosed my PMR, before my primary did.

I hope you find the right solution for you, too!

@dadcue Pre-PMR/GCA, I was always very physically active. No indication that I would be slowing down anytime in the future. That changed with PMR/GCA. No doubt, I have put a lot of wear and tear on my body. I completely agree with 'The Prednisone Paradox'.

@ropnrose

I was on the decline after the age of 50 but still going strong in the sense that I thought I was invincible. I already had inflammatory arthritis that was diagnosed when I was 32. PMR was diagnosed when I was 52. I had a lot of "mystery pains" in the interim between the ages of 32 to 52. I took high doses of prednisone intermittently but I was always able to stop prednisone within a couple of weeks. The pain would disappear temporarily but it would recur 1-2 times per year.

After I was diagnosed with PMR, I took moderately high doses of prednisone every day for 12 years. I thought I was even more invincible and told people that daily Prednisone was a "blessing." I was wrong about prednisone being a blessing but it was better than nothing. Prednisone nearly killed me once or twice so that was when I had to admit that I wasn't invincible.

I also had a long conversation with someone who' had an adrenal crisis because of her long term prednisone use. She set me on a straight path such that I actively pursued ways to be able to discontinue Prednisone. A couple of surgeries helped to reduce my prednisone dose. It took me a couple of years but I eventually got off Prednisone thanks to the biologic I currently take. I have been off Prednisone for 6 years and currently feel more like my chronological age of almost 72. Not too bad considering the circumstances because I was telling people I would not live to be 70.

I was part of the "no pain ... no gain" mentality before PMR was diagnosed. After PMR was diagnosed, I forgot about all the pain I had before PMR. People encouraged me to take more Prednisone whenever I had pain. In retrospect, taking more prednisone wasn't the best thing I could have done.

I'm glad my doctors didn't ever stop trying to get me off Prednisone.

@ropnrose The pain in my thumb, my hip and my shoulder are being treated with injections. Thus far nothing has helped the pain in my lumbar and cervical spine. I’ve had many injections and I still can’t turn my head to the left or look up at the sky. I’m not sure how many injections I can take to help to relieve the pain. I don’t find the doctors today or all talking to one another to help the patient