Effect of Statins on PMR pain

I was taking 5 mg of Crestor .

Appears that everyone reacts differently to certain combinations of drugs. Have GCA and treated for it x13 months. On Prednisone from Jan to end of August in 2024 and now on Actemra in August '24. Wonder how rheumatologist will know when the inflammation is gone. She will be in to see me at my next infusion. Anyone out there who has recovered from this or gone into remission or had remission and it came back.

I have done a monthly Actemra infusion for the last 3 years. I have tried to increase the number of weeks between infusions. I have gone as long as 7 weeks between infusions. I don't have a sudden relapse of symptoms but I have subtle symptoms which gradually increase.

My inflammation markers ESR and CRP are often checked prior to my Actemra infusions. When I went 7 weeks between infusions there was a slight increase in my inflammation markers. Because of the subtle return of symptoms combined with increased inflammation markers, my rheumatologist says I need to continue doing Actemra infusions at least every 5 to 6 weeks.

Thank you dadcue, I know I am in for the long haul and your comment verified my feelings. My scalp (headaches) are still we me off and on along with fibro and L4 fx. Rheumatologist said the labs look good but protein and platelets slightly out of range. They draw blood at every infusion whereas, before, I had to go to the lab a few days before the infusion. Also have infusion for bone loss due to Prednisone, 2nd one coming up in May. Hard for me to imagine doing this for 2 or more years. Wish you well with your txs in the future. Thank you for the input.

To salmountain, Before GCA my husband and I were dx with a-fib. We have recovered from that(husband had heart failure and cardioverted on his own). My primary put me on 5mg Crestor and Metropolol for blood pressure and hi Cholesterol. Cholesterol is way down. Prednisone (as much as 100mg at one point) from January to August 2024 and what a nightmare that was. Actremra every month since August 2024. Had L4fx and bulging disc thanks to Prednisone. All drugs have side effects whether immediately or "down the road" unfortunately.

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.

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.

I have permanent nerve damage from the spinal stenosis which was "discovered" approximately 10 years ago. I was still on a moderate dose of prednisone when I had a sudden onset of neurological changes not to mention excruciating leg pain. At one point I was dragging my right leg when I tried to walk.

I was being prepped for emergency surgery on my spine. I was told that I wasn't a good surgical candidate because of my years of prednisone use. Before surgery, the surgeon ordered a bone scan because he wanted to make sure I had enough "good bone" to hold all the hardware that would be needed to fuse my lumbar spine after all the "bad bone" was removed.

The surgeon said I would need at least a year to recover and being on prednisone would not be good. I felt like I had nothing to lose and the pain was excruciating so I took 100 mg of prednisone which eased the pain. The pain improved but I still have some nerve damage that causes leg weakness and foot drop mostly on the right. When surgery was delayed -- the recommendation was to let pain be the "deciding factor." I'm pretty sure the surgeon 10 years ago thought it was just a matter of time until pain decided things.

After the first incident, my rheumatologist renewed efforts to find a way to get me off Prednisone so surgery could happen safely. I think the pending surgery was one reason Actemra was approved for me.

Actemra infusions were initiated in order to facilitate surgery when I had the more recent incident with the synovial cyst. I needed to go back on Prednisone when there was a shortage of Actemra. When Actemra was restarted, the surgeon said I would need to stop Prednisone again and no Actemra for a month before surgery and a month after surgery. The only way that was going to happen was if I could go 2 months between Actemra infusions.

I quickly got off Prednisone when Actemra was restarted. When the synovial cyst disappeared the surgery was placed on hold again. I wasn't able to go 2 months between Actemra infusions.

You are stoic and brave with all you have had to endure. I pray you will continue to improve and try to enjoy each day with gratitude for what you can do.