PMR relapse symptoms

@dkucan from speaking with several doctors the conscientious is if the pain lasts more than a short time in the morning it’s likely still PMR.

Do you have a rheumatologist you can ask? I have not got to a point of getting off the steroids yet.

I have been in full remission for ten years. I went through a very slow Prednisone taper over about 18 months. I still had at least one half-step to go. My Rheumatologist said “you’re done!”

But, over the past several weeks I am having the exact symptoms that I experienced at the beginning of my first PMR flare: sharp, but erratic, pains behind my left knee and back of the calf. Some minor soreness in left upper arm and shoulder. I originally went to a Sports Medicine doctor who sent me for an MRI. She declared a torn ACL though I had not done anything to injure it. A few weeks later, I went in with severe shoulder pain. She gave me three steroid shots as well as drain a huge amount of liquid from my left knee.

A week or so later, I could barely move. I couldn’t get into my primary so went to the ER. I had been studying my symptoms which included terrible night sweats and rapid weight loss.
I told the ER doctor to test me for PMR and it came back positive. He gave me a 60mg dose of Prednisone.
An hour later I was already feeling a bit better. This started me on the 18 month path to remission.
I truly hate the thought of going through that again.

I’m going to ask my primary to run the proper blood tests. Hopefully, it will come back negative so I can focus on another source of my pain. It just scares me that it’s the same pain I started with a decade ago.

@kensterfly My PMR started right after I had a torn meniscus treated; drained water, gel shots that did nothing and finally a cortisone shot that did the trick. I suffered with my knee for a good month before I had the cortisone shot on my knee. My neck and upper arms were feeling discomfort when I woke up in the AM but I thought I just slept funny. Soon after, my thighs started to feel funny. At that point I knew something wasn't right. I visited a PC Doc who told me to take warm baths and drink water with electrolytes. That did not help. My 2nd visit to the PC Dr told me to take Magnesium Glycinate and to make an appointment with a Rheumatologist. Within a couple of days I woke up and could not move my arms and legs. I was scared. As the day went on I improved. The next day the same thing happened. After it happened on the 3rd day I Googled my symptoms and PMR was the diagnosis. Steroids were required. I happened to have a prednisolone pack in my house and self medicated. I was brand new within an hour. I followed up with a Rheumatologist last December 2024. I was started on 20mg/day and am now down to 2mg/day. My knee pain has resurfaced and became very swollen. I had been at 1,5mg/day. PMR symptoms were starting to come back so I had to bump back up to 2mg/day. So far so good. I must fix my knee to proceed with my decrease in PMR meds.

Thank you for your input. I hope to find out soon if it is a recurrence of PMR. If so, maybe I can treat it early to prevent one of the debilitating, immobilizing flares like I had in the early months of the first round.

@aisp3b

"I must fix my knee to proceed with my decrease in PMR meds."
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My knee replacement surgeries were good for a 10 mg reduction in my prednisone dose. Surgery for trigeminal neuralgia was good for another 10 mg reduction.

Being on prednisone to treat PMR isn't an excuse for not being treated for other conditions. However, prednisone was the excuse for postponing my lumbar fusion surgery for severe spinal stenosis. The spine surgeon was "reluctant" to proceed with that surgery because of prednisone.

When it was all sorted out and done, I still had PMR and on 10mg of prednisone. Actemra (tocilizumab) allowed me to taper off my last 10 mg of Prednisone.

I don't have PMR relapses anymore while being off Prednisone but I still have severe lumbar spinal stenosis.

@dadcue Are you still on Actemra after being off prednisone?

I am also weaning off steroids. My symptoms are returning, but my doc is not listening at all. My numbers are better, still elevated sed rate! Feel like crap, having lots of neck pain and digestive issues. Since I am having digestive issues and neck pain she believes they are not symptoms of PMR and will not be treating further! Initially I had these same symptoms when she put me on steroids…..I need an astute rheumatologist in Pgh!

@retiredphil

I started Actemra on January 1st 2019 for PMR. It took me nearly 2 years to get completely off Prednisone. I have now been off prednisone for 5 years.

My inflammation markers gradually increased along with a gradual increase in my level of pain whenever I went too long between Actemra infusions. However, I wouldn't say that I had a total relapse.

I still do monthly Actemra infusions without any serious side effects. My rheumatologist doesn't want me to stop Actemra for a variety of reasons.

Actemra put PMR quickly into remission but I needed to stay on 3 mg of prednisone for an extended period of time because of secondary adrenal insufficiency. An endocrinologist expected that my cortisol level to be low because of my being on Prednisone for more than 12 years. The only question was how soon my adrenals would recover. Fortunately, my cortisol level rebounded when given enough time. Actemra doesn't suppress my adrenal function like prednisone did. I'm much better being on Actemra instead of prednisone.

@gem3850 Please check this out. It is very helpful...
https://canadiancentreforaddictions.org/prednisone-withdrawal/