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I’m newly diagnosed with PMR and I am not taking well to Prednisone..
In September of 2025 I was hit suddenly with all the symptoms of PMR. I did have the carpal tunnel syndrome while pregnant, many years ago, but as soon as I delivered it would leave me. The PMR was sudden, my blood markers were off the chart for inflammation and for the first time ever, I was debilitated to the point where my hair had to be cut off because I couldn’t brush it anymore. My scalp was so tender. I would have to find my own way out of bed because I live alone. I couldn’t get down or up the stairs and I had 20 lbs of fluid on me besides every joint in my body was inflamed and my muscles were tender and weakened. I had to be assisted to the car to get to my doctor. I have never experienced anything like this in pain before. Besides the fact that my vision was changed.
After seeing a neurologist, they detected the carpal tunnel syndrome. He suspected PMR. Yet needed another Neurologist to concur with his findings. I’m on the urgent waiting list. My active life has literally changed overnight. The waiting list is over a year. My family Doctor made an executive decision and started me on prednisone. I have a history of medication sensitivities and allergies. He started slowly, 12.5 and I was feeling better from the pain, but I had myself scratched up and no sleep whatsoever. I think I was afraid to sleep because I was aware of the morning pain. But I had hallucinations of spiders on me. lol. Eventually he increased it because I had breakthrough pain. Well my family was home for Christmas and my daughter is a nurse. She was very worried about the blood pooling in my left leg by the ankle. I thought I seen spiders crawling on the wall and my eyes are blurry. Now I am going to a rheumatologist. In a few months! You are reading this correctly. The family doctor has decreased the prednisone dose to 15 because the last dose was not safe for me. I refused narcotics for pain management. I stick to Advil. I am not one to lay down during the day but I was told not to drive. Sometimes I pace around looking for something that I can do without causing pain. My knees are still swollen and I can’t raise my arms over my head. I can’t even touch my left shoulder with my right hand. Getting dressed is impossible. The fine motor skills and pain in my fingers are terrible. I have assisted aids for the bathroom. A seat for the toilet and a seat for the shower. My leg strength is decreasing. I’m losing weight that I can’t afford to lose. Never thought I would say that! But the most humbling thing is depending on asking my daughter, or sister or when desperate, my ex husband to pick up something for me or do a necessity for me. I have always been independent. I am 55 years old and I dedicate my life to working and raising my children to be educated and self sufficient. Not to be responsible for me. I can’t imagine this is going to be my life. There has to be a better medication than is used to treat this.
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@dadcue Unfortunately there is nothing that I know of that takes effect immediately like prednisone. When I was diagnosed with GCA and PMR, I received 3 daily infusions of 1000 mg of methylprednisolone. By the time the second infusion was done, all of my symptoms were magically gone, and have never come back. All of the other medications take months to be fully effective.
@jeff97
I'm curious whether or not your doctor immediately directed you to the bridge to Actemra after your 3 daily infusions of 1000 mg of methylprednisolone? It took 12 years for my rheumatologist to point me in the direction of Actemra as an alternative to Prednisone.
Are you off Prednisone now? What is your plan to get off Actemra?
I started Actemra 7 years ago. It took me about 2 years to transition to Actemra alone but I have been completely off Prednisone for the past 5 years. It took 2 years for me to make a complete transition to Actemra alone but that was mostly because of adrenal insufficiency and a low cortisol level.
Are you completely off Prednisone? If so ... how long did it take to taper off Prednisone? I have been sailing along on the Actemra highway without any problems but there doesn't seem to be any suitable exit ramp anytime soon.
It was easy enough to take an exit ramp because Actemra was abruptly stopped when my supply was cut off during Covid. That exit ramp was bumpy and led me to more Prednisone.
I took a second exit ramp once to see if it was any better than the first exit ramp but I ended up on Prednisone again the second time too. The only nice thing was that both exit ramps were a nice change of scenery for several months before I crashed into prednisone again. Both crashes didn't do any long term damage because when Actemra was restarted it only took a few weeks to get me off Prednisone again. That is quite a contrast to the 12 years I was on Prednisone before Actemra was tried.
Now my rheumatologist doesn't ever want me to stop Actemra because it doesn't seem to have many downsides. Many additional medical problems that prednisone caused have also resolved so I don't ever want to take prednisone again.
My quality of life is much better since I divorced Prednisone and married Actemra.
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1 Reaction@dadcue
My rheumatologist wanted me to start Actemra as soon as I was diagnosed, but it took about 6 weeks to get approval from the insurance company. For those 6 weeks I was taking 60 mg of prednisone per day.
Once I started the Actemra, it took almost exactly a year to get off of prednisone. That happened in mid August of 2025. I had some mild prednisone withdrawal issues in the month following when I stopped, but nothing too bad. Also I felt like my metabolism recovered completely after being off of it for a month. It took about 4 months for me to feel like the prednisone and its side effects were completely out of my system.
I've been taking weekly injections of Actemra for about a year and a half. Assuming things keep going ok, my rheumatologist plans to switch me to biweekly injections in 5 months, which will be the second anniversary of my diagnosis. If things keep going well, the plan is for me to stop Actemra after a year of biweekly injections. It would be nice if that works out, but biweekly injections wouldn't be too bad long term.
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3 Reactions@jeff97
My rheumatologist took a different approach when I started Actemra. I started with injections every 2 weeks. My rheumatologist said he wanted to "play it safe" but that was in 2019. My rheumatologist didn't think the research showed a significant difference between weekly Actemra injections and injections every 2 weeks.
I did well doing injections every 2 weeks and I got off prednisone within a year. Then the unthinkable happened within a couple of weeks. I needed 60 mg of Prednisone again. That was a huge setback.
Actemra was interrupted while a different biologic (Humira) was tried. I was able to taper back to 15 mg of Prednisone again but no lower. I was switched back to Actemra with weekly injections instead of every 2 weeks. I got off Prednisone easily the second time going from 15 mg to zero in a few weeks,
Fast forward to when I developed inflammation of a different kind when I was OFF Actemra. A synovial cyst formed on my lumbar spine which is usually caused by inflammation. I was being prepped for a lumbar fusion while I tested monthly infusions of Actemra. When it was time for surgery, it was discovered that the synovial cyst shrunk and was reabsorbed. The surgery was postponed indefinitely.
The neurosugeon said it was very rare for a large synovial cyst on my lumbar spine to be reabsorbed like it was.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11278635/.
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When my rheumatologist found out ... he told me to stay on monthly Actemra infusions. Since I tolerated Actemra infusions really well ... there was no need to switch back to Actemra injections.
My Actemra progression has been in the opposite direction as you. My rheumatologist wasn't concerned about playing it safe anymore. I was told to stay on monthly Actemra infusions. Furthermore, my rheumatologist said Actemra is better for me than Prednisone.
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1 Reaction@johnbishop I agree from reading up on GCA it sounds like that is happening to her @marie709 I a new to PMR but have read up about GCA and sounds like she has a lot of the symptoms. They say go to ER especially due to going blind. Severe headaches, low grade fevers and scalp tenderness with blurred vision are all signs of it. I’m not a doctor but hope this helps
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1 ReactionWelcome @janetlee2026, When I was diagnosed with PMR the first time, my Mayo rheumatologist was always concerned and asking me to let him or my primary care doctor know if any of the vision, scalp tenderness, facial pain and all of the ones around the head because they would need to change my treatment. It kind of put a scare in me and I was always watching for those symptoms when my PMR was active. Thankfully I never had any of the symptoms. How long have you had PMR? Have you looked into any lifestyle changes to help with managing the PMR?
@johnbishop
I, too, am super vigilant about GCA and suspect of every little ache and pain.
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2 ReactionsDid you find the right meds? Meds out there can help? Hope you found something. Sounds o so bad. Best wishes.