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Suddenly much better
I am approaching the 3rd anniversary of this blasted disorder, and have successfully tapered to 1.5 mg prednisone daily. But PMR has been ever present until one week ago. When I took my daily walk through the woods, I noticed pretty quickly that it no longer felt like my thighs were bound by an elastic cord, and my step felt much lighter--walking had become the joy that it always had been before PMR. My balance is back. My shoulders don't hurt. I can tell that the PMR hasn't quit, but for the present it has loosened its grip.
It took me two days to realize what had changed in my life, and perhaps why my PMR had lessened. I had pulled out my old cheap vibration plate to help with lower back pain (which is does). I used the plate for several days. PMR stayed calm; life looked suddenly much better.
There is no research on PMR and vibration, but if you ask one of the chatbots, as I did, you may find that WBV ("whole body vibration") can lessen inflammation, among other benefits. So it makes sense. I'll report later on whether or not my good fortune keeps up. Meanwhile, it's 15 minutes a day on the vibration plate.
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@leonalawrence
I am fortunate my GCA friend suggested I get checked for PMR with Rheum doc. I am very thankful for that advice as my own doctors did not look at PMR as an option for my pain. I had a good conversation after my diagnosis with my general doc about things he needed to know for to help him diagnose PMR.
The big item we discussed was PMR does not always need to have high inflammation numbers in blood work for diagnosis. My numbers were high but not "off the chart".
@leonalawrence My PMR and suspected GCA appeared simultaneously. My rheumatologist put me on 60 mg. of Prednisone for 6 weeks, them I started my taper. When I got to 10 mg., I had a flare and my GCA symptoms started to return. I was also having the classic PMR pain. I discussed Actemra infusions with my rheumatologist. I learned a lot about Actemra in this forum from others. She agreed to prescribe it. That was in Jan. 2025. I get the infusions every 4 weeks. I have been able to taper to 1 mg. (I'll be done in a week) without any issues. I was very active before these diseases. Within 3 months of starting the infusions I felt remarkedly better. I wasn't back to my old self, but I didn't have any pain or fatigue. I was able to resume pickleball and was able to play golf more than one day a week. I just returned from an 11 day trip to Iceland. I did a lot of walking. Although my stamina hasn't completely returned, I feel like I'm getting close to my pre-PMR/GCA stamina.
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5 ReactionsThanks I will note your actemra response in my diary about this.
Have you had any negative symptoms from the ,Actemra?
That is wonderful news! I'm hoping for recovery also one day!
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1 Reaction@leonalawrence I had such dramatic positive results from Prednisone that I only took the first bottle. After that I saw the end of the PMR and of the meds. Wonderful result.
My first Prednisone was in shot form and directly into a nerve. A lot of swelling happened, but dramatic improvement. The doc said he had never done that before. It may have been accidental. If so, it was a happy accident.
@ropnrose
Actemra. I haven't read about Actemra but will. Thanks for sharing your story of success. I will share your story with my friend with GCA.
How long will you be on Actemra?
@tatiana987
That is interesting. A shot of Prednisone. I hope the doc continues trying a shot with other clients.
@leonalawrence
In Part #1 of the GiACTA trial, the effectiveness of Actemra (tocilizumab) for GCA was demonstrated. Actemra was continued for 52 weeks, allowing remission to be achieved in about half of the patients. After discontinuation of Actemra, half of the patients relapsed, leading to the question of how long should Actemra be continued?
https://pubmed.ncbi.nlm.nih.gov/28745999/
Additional research showed that remission could be restored when Actemra was restarted.
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My personal experience with Actemra suggests treatment can be continued "indefinitely" because I'm into my 7th year of taking Actemra. I relapse when Actemra is stopped but some patients are able to discontinue Actemra after one year.
I don't have any flares as long as Actemra continues. I was on Prednisone for 12 years with countless flares before Actemra was tried. I had flares even when I was still taking prednisone and I never could taper off prednisone in 12 years.
The biggest change for me personally is that I don't anywhere near the side effects that Prednisone caused me, Not only was Prednisone stopped ... I was able to discontinue about 10 additional medications being used to prevent or treat side effects from Prednisone.
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2 Reactions@leonalawrence I think I should have said Prednisolone, not prednsone for the shot I got. The shot was the type that is used in hospital for very severe problems, they said. I got it in an urgent care for pain setting. I may have been among their least medicated and loudest complaining patients.
@leonalawrence I will be on the current dosage for 2 years. My rheumatologist will then taper my dosage down. I don't know how long the taper will be. There are studies that show, if Actemra is stopped too soon, a relapse can occur.
fyi-I am on Medicare and it and my supplement pay for 100% of the monthly infusions. Actemra also can be administered by self injections at home. My Part D insurance does not cover it. Even if it did, I would have a co-pay. By going the infusion route in a medical setting, it is covered and I don't have any out of pocket. Good luck to your friend.