PMR and Inflammation Markers

Mine went down within two weeks, but it was 80 at the time I was diagnosed. I feel like I get hurt/injured every time I try to do something physical though, and I shake all the time.

My Sed rate did not go down much at all from 86 at the start of prednisone two and a half years ago. Then this last test it is down to 68 so it has moved the right direction finally. CRP down from 25 to 8. Everyone seems to be different in their response to prednisone. It takes much patience.

Hi Queenie2030,
Just wanted to let you know that my rheumatologist told me that the Sed Rate is often slower than the CRP to decrease with PMR. I am having the same issue and my Sed Rate was 79 when I was first diagnosed but is in the 60s now (almost 1 year later). I hope that is helpful but at least we are seeing some slow movement. Blessings!
Sandi

Thank you for encouraging words. Sometimes it seems like everyone else is down to o.5 mg after a year. I am working on being more patient. I hope you too continue to see improvement. Blessings to you too.

Have you considered a second opinion? I've been on pred and Actemra since 2019 for GCA....so I honestly can't speak to your concern with any authority. It is just I believe that when we are concerned and watchin our markers...if you aren't content...it never hurts to be reassured. 💞

Update…got blood work back today. I guess methotrexate did the job. My CRP is 1!!!!!!! I see rheumatologist Tuesday next week. Hopefully now that markers are finally normal I can get off at least the prednisone. My leg cramps are brutal and sleep is awful because of it. I categorize them as violent and I have a massive pain tolerance

Thanks Grammy. I tried methotrexate but had to quit due to side effects and ended up back where I was before I took it. I have confidence in my rheumatologist and now he wants me to try Actemra, right now trying to get extreme back pain issues under control with a steroid injection on Monday. Also seeing endocrinologist in June for adrenal insufficiency which rheumatologist thinks I have. All of it is making me rather miserable but hopefully I will get some help soon.

I have degenerative disc disease so I understand the back issues too. I hope that Actemra will work beautifully for you! ❤️

I was miserable on prednisone and my quality of life was deteriorating after 12 years of PMR.

PMR was diagnosed in 2007. I was familiar with prednisone for other autoimmune conditions because I was diagnosed with inflammatory arthritis with uveitis in 1995. I got fast relief and only took prednisone intermittently and short term for these conditions.

After PMR was diagnosed I started with 40 mg of of long term prednisone. After 5 years I was only down to 30 mg. My inflammation markers were rarely within the normal range.

Progress with reducing my prednisone dose was extremely slow. I was only able to maintain a dose between 10-15 mg after 12 years of PMR.

Maybe I was getting impatient but I didn't want to take prednsione for the rest of my life. That was when my rheumatologist suggested Actemra. I was able to taper off prednisone within a year of starting Actemra injections every 2 weeks. I might have tapered off sooner except an endocrinologist diagnosed adrenal insufficiency when I got down to 3 mg of prednisone.

When the endocrinologist said my cortisol level was marginal but adequate I was told to stop prednisone. Safeguards were in place in case anything happened and my adrenals couldn't keep up with my cortisol needs.

I had a setback when I had a flare of uveitis and needed 60 mg of prednisone. Actemra was stopped and different biologic called Humira was tried because it was "optimal" for uveitis. Unfortunately Humira was less than optimal for PMR because once again, I was unable to reduce my prednisone dose below 15 mg.

Actemra was restarted and Humira was stopped. I tapered off prednisone in 3 months the second time with weekly Actemra injections.

I have been off prednisone for 3 years. My quality of life has improved. Unfortunately, my lumbar spine has severe spinal stenosis. Surgery has been delayed several times. I was a poor surgical risk when I was on prednisone. I'm a better surgical risk on Actemra if I can go 2 months between Actemra infusions.

I'm in no rush to do a lumbar fusion. PMR is probably in remission. Inflammatory arthritis probably damaged my spine but Actemra seems to help that problem. The neurosurgeon doesn't believe that I'm not having that much pain.

Thank you for sharing your long experience with PMR. It puts my 2 and a half years into new perspective. I too had uveitis years before PMR and short term prednisone took care of it. Have you had other procedures to help relieve back pain like injections, ablation, laser, etc. My pain doctor has a long list of things to try if the steroid injections do not give me relief. Surgery to be a last resort. I was told my back spinal stenosis and bulging disks is caused by arthritis. I plan to try Actemra probably starting in August. I am very glad to hear your positive experience with it. It is so encouraging to hear others experiences as we make decisions what to try next. I am looking forward to starting with an endocrinologist in June concerning the AI. I also have a sizable nodule on my thyroid that she is to address. I had a biopsy of it which was benign. Best wishes to you.