PMR relapse symptoms

I just got both my RSV and flu shots, PMR seems to have come back with a vengeance. Any one else experience this. Trying my best to get off prednisone, 7.5 a day now. Going on a biosimilar, Humira as soon as I feel better.

I was diagnosed with PMR in August of this year. Had the typical shoulder and arms pain. Put on 20mg, then 15 then 10 and started 9 mg of prednisone. Last week I developed pain in my ankles and elbows. Rheumatologist thought it was gout and water retention so prescribed water pills and gout medicine. I had a blood test last week. First results are in with sed rate of 80. CRP not in yet. My question is has anyone had a flair in their ankles and elbows? No other pain. I am barely able to walk or pick things up. What the heck?

@elizadolittle I think you may be on to something. My spine doctor suggested that what symptoms remained after stenosis treatment was likely PMR. And, after PMR treatment, especially at beginning pred doses, the symptoms that remained were stenosis. The doctors didn't seem to have a way to distinguish between the two. Kind of disheartening.

@urusvati

Don't get disheartened. It takes time to sort things out when you are treated with Prednisone. I was on Prednisone for 12 years to treat PMR until I finally tapered off.

Prednisone works for any type of pain that is associated with inflammation and not just PMR. Whenever someone is diagnosed with PMR, they get instant pain relief from Prednisone so they assume their pain was caused by PMR. That is a fallacy because pain by its very nature tends to have at least some inflammation as a component of the pain. Prednisone treats any kind of inflammation and not just the inflammation caused by PMR.

What I'm saying is that people diagnosed with PMR shouldn't automatically assume that pain relieved by Prednisone is PMR related. I have multiple conditions including spinal stenosis, nerve pain, inflammatory arthritis in addition to PMR. I can safely say that Prednisone helped to relieve all of my sources of pain.

The problem for me was not how I could live with all of that pain. My problem was how was I going to live without prednisone. Then I learned there were better options available to treat spinal stenosis, nerve pain and inflammatory arthritis. After PMR was treated without prednisone ... my quality of life improved dramatically.

The irony of long term prednisone use is that it causes its own pain when you try to taper off. This type of pain is caused by prednisone withdrawal and adrenal insufficiency. The pain also feels like PMR and it is also relieved by more Prednisone

@dadcue I had a inkling this could be part of the issue also.
May I ask what you used to treat the nonPMR pain rather than prednisone?

@abbeyc

Wow ... I need to think about that because I took Prednisone for 12 years and now I have been off Prednisone for 5 years. I consider it a miracle that I got off Prednisone!

Some of the interventions started before I tapered off Prednisone. I had knee replacement surgery on both knees first. I give my knee replacements credit for a 10 mg reduction in my Prednisone dose.

For nerve pain ... I had another surgery. The surgery I had for trigeminal neuralgia resulted in another 10 mg reduction in my Prednisone dose.

Right after surgery for trigeminal neuralgia, I had a "flare of sciatica." People on the internet were saying my symptoms were "piriformis syndrome" which was common with PMR. My sciatica was caused by severe spinal stenosis and an urgent lumbar fusion surgery was recommended. That was a huge setback because I wound up taking 60 mg of Prednisone to relieve the sciatica. I still haven't had the lumbar fusion but I have done conservative interventions like physical therapy.

Actemra (tocilizumab) eventual controlled PMR and I was able to taper my prednisone dose down to 3 mg. I received some interventions and guidance from an endocrinologist to help me overcome adrenal insufficiency that was the result of long term Prednisone use.

After I got off Prednisone, I enrolled in a diet and exercise program. I also tried Tai Chi and acupuncture. I continued with physical therapy and deep tissue massage relieved a lot of post PMR pain.

My rheumatologist belatedly diagnosed gout because my uric acid level was high. Gout flares are sometimes treated with Prednisone but I don't think I have ever had a flare of gout. Now I receive allopurinol for gout and my uric acid level is normal again.

At one stage, atorvastatin was stopped after I got off Prednisone. My cholesterol level was high when I took Prednisone. After I tapered off Prednisone my cholesterol level was too low and my CK level was high. My rheumatologist said I had statin induced myopathy which involves muscle pain/weakness. It wasn't clear exactly what was causing the myopathy but metabolic abnormalities were diagnosed. I was already seeing an endocrinologist for adrenal insufficiency and they are still treating the metabolic problems that Prednisone caused. I have lost a significant amount of weight with help from the endocrinologist.

I can go on and on about various interventions that helped me to get off Prednisone and have allowed me to stay off prednisone. I still have pain but the pain is being addressed without Prednisone. I never want to take Prednisone again.

If I could identify one thing that I did without medical interventions it would be my aquacise classes. I do aquacise regularly now and I was elated when I discovered that I could still swim.

Medically ... I give Actemra most of the credit. It seems to keep all of my systemic inflammation at normal levels without the need for Prednisone. I don't seem to have flares of anything anymore.

@dadcue wow! I will have to read this a few times. lol
Sounds like you have a really good Rheumatologist and endocrinologist. I can’t find a doctor who will work with me the way yours does. I also gained weight after coming off Prednisone and I believe it’s because my metabolism is off and also from loss of muscle. I am searching now for functional doctor to address this.
I have complained about muscle pain but no doctor suggested CK blood test.

Thanks for sharing all of this.
I’m convinced I need to find a different Rheumatologist

So you are still on Actemra?

@abbeyc

I have been on Actemra for 7 years with minimal side effects. Not only was I able to taper off Prednisone, I also discontinued many other medications which were treating Prednisone side effects. Some of those other medications were likely contributing to my pain as well.

It is called "polypharmacy" that stems from long term Prednisone use. My primary care doctor said she loves to deprescribe medications more than adding to a growing list of medications along with complicated drug interactions.
https://www.nia.nih.gov/news/dangers-polypharmacy-and-case-deprescribing-older-adults

I’m having the same issues after being off Prednisone for 2 months. My rheumatologist waved goodbye and said to take Tylenol 3 times a day, like forever. She said I now had osteoarthritis and not PMR. (General arthritis patients at Kaiser are treated by primary care docs. ) But I keep wondering if there’s more to the aftermath of PMR than is understood by rheumatology.

When I originally got PMR, I did some online searching and learned that it is a sadly “neglected” disorder in that there has not been a lot of funding or research into causes and treatment. Most likely, doctors are in the dark about the aftermath as well, leaving patients scrambling to understand what is going on. Hence this support group, which has been of great help to me.

@elsbeth you said it perfectly! It’s good to know we are not alone dealing with all these questions.
Totally agree that the aftermath of PMR is not understood. It would help us if they atleast fessed up to it and provided a little direction. And told us they are seeing similar symptoms from other patients.
My Rheumatologist did however say I was doing the right thing to keep meeting with every type of specialist. But how exhausting, inefficient and expensive is that!!