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Effect of Statins on PMR pain

Polymyalgia Rheumatica (PMR) | Last Active: Feb 19 6:16pm | Replies (29)

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@dadcue

I should add something else. I had to stop Actemra once during the Covid era when there were problems with the supply chain. Existing supplies of Actemra were diverted to seriously ill Covid patients.

I was off Actemra for nearly 8 months before supplies improved. I didn't do so well during that time interval. I have severe spinal stenosis worse at L4-5. During the time I was off Actemra a rather large synovial cyst formed at L4-5. The L4-5 level is the most frequent site for synovial cysts in the lumbar spine due to the high degree of movement at that joint. I was having more and more pain in the lower back along with more leg pain, numbness and tingling. I could hardly walk and the surgeon said paralysis was a distinct possibility if I didn't have a lumbar fusion.

The spine surgeon said there was more nerve compression involved because of the synovial cyst. A lumbar fusion seemed imminent until Actemra supplies improved. After Actemra was restarted, my symptoms lessened. A repeat MRI showed that the synovial cyst was reabsorbed.

The spine surgeon said synovial cysts can be resbsorbed but "something must have stopped the inflammation" that caused the synovial cyst to form. The decreased inflammatory fluid production after Actemra was restarted was the surgeon's guess. In any case, the lumbar fusion was postponed. That was approximately 3 years ago and I still haven't done the lumbar fusion.

This is another reason that my rheumatologist is reluctant to stop Actemra.

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Replies to "I should add something else. I had to stop Actemra once during the Covid era when..."

Did you have leg weakness before the cysts were found. I ask as my coccyx area is still painful from the L4-5 with the bulging disc and ortho said it could take a year to heal which would be late April. Have a torn labrum and bursitis in rt hip which prevents sleeping on rt side and coccyx pain which wakes me at night. Wow is me. Could be worse. Am glad you do not need a spinal fusion at this point and wish you well in your recovery.