I’m Not Responding to Prednisone and I Need Advice

@hosers2

I'm no longer taking atorvastatin. I didn't need atorvastatin before PMR was diagnosed. I suspect Prednisone increased my cholesterol level because atorvastatin was started within a year of starting Prednisone. I took atorvastatin for more than 10 years . I don't think atorvastatin "contributed" much of anything to my muscle and joint pain during the 12 years I took prednisone for PMR. Whether atorvastatin caused some of my muscle pain or not would be hard to know at this stage.

An interesting thing happened after Actemra was started. Within a year after I tapered off Prednisone, my cholesterol level was below normal. One doctor said a cholesterol level can never be too low but my rheumatologist disagreed.

I was having residual pain while on Actemra but nothing close to the threshold of PMR pain. My rheumatologist checked my CK level and it was elevated. My rheumatologist thought storvastatin was contributing to some of my residual pain. An elevated creatine kinase (CK) level with concurrent muscle symptoms is a primary indicator of statin-induced myopathy. While low cholesterol is the goal of statin therapy, it doesn't cause muscle damage. Instead, statins are known to cause muscle toxicity.

My rheumatologist stopped atorvastatin but then my cholesterol level rose and was above normal again. My CK level normalized but I still had residual pain.

Fortunately, I was seeing an endocrinologist for Prednisone induced metabolic syndrome. The endocrinologist said I was "sensitive to statins" but I still needed something to control my cholesterol level. My endocrinologist started Zetia (ezetimibe) which lowers cholesterol levels by a different mechanism compared to how statins work.

I still see an endocrinologist for Prednisone induced metabolic syndrome. My endocrinologist said it will take a long time to reverse this Prednisone side effect since I took Prednisone for more than 12 years.
https://my.clevelandclinic.org/health/diseases/10783-metabolic-syndrome
and
https://pmc.ncbi.nlm.nih.gov/articles/PMC9772659/
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I'm making progress reversing metabolic syndrome. It took me a few years but since I stopped Prednisone, not only have I stopped atorvastatin, I have also stopped 3 blood pressure medications because my blood pressure normalized. Warfarin was stopped because my risk of another cardiovascular event is much lower since Prednisone was discontinued.

My cholesterol level is normal on Zetia.

@tsc Normally doctors should screen for other issues before providing a diagnosis of PMR. It's quite common for a poor response to steroids to occur because the starting dose of prednisone is too low to quickly reduce the pool of inflammation that has built up in the body., and eliminate the new inflammation produce daily. And some people need higher doses than others. In my own case I was diagnosed with PMR and suspected GCA and needed 100 mg of pred for several days to stop the CRP escalating. And, yes, I was certainly on your 12/10 scale.

There are other diseases that have symptoms similar to PMR. If you are not responding to Prednisone, then that could be a sign that your doctor needs to widen his search.

hello,,,I have recently been diagnosed with PMR..Had a steroid shot two weeks ago ..also just finished around of methylprednisolone tablets...but have had two episodes where my heart rate went to 150... never having anything wrong with my heart,,wanted to know if this has happened to anyone else?

Try not to be discouraged. I did not respond to low dose prednisone for five weeks then all of a sudden I did. My labs confirmed that the prednisone did not help until all of a sudden it did. I resisted increasing beyond 15 mg. Because I did not want to prolong the taper. Am on week three of using a biological (Tyenne) to hopefully allow a speedier reduction in prednisone. My rheumatologist said that maybe 30% of PMR patients do not immediately respond to steroid treatment.

@pmr2026
Dehydration will cause your heart rate to increase drastically. That has been the issue for me.

Wish I could help, but I’m going through the same thing. I’ve been on prednisone since April, and 15 mgs. did not help. Despite the low dosage, I’ve had some nasty side effects, like losing my hair, fatigue and, of course, pain. I’ve been weaned down to 3 mgs. and feel exactly the same as I did when I started. I’m beginning to doubt if I really have PMR, or is it something else. I’m going to hang in there until I can get off the prednisone. I wish you luck.

@tivogliobene I think you need a new doctor. Maybe 20or 25 mgs woukd relieve the pain.

35 years ago I went to a rheumatologist and gave him a textbook definition of symptoms for PMR. I had no idea what PMR was. He Rx 10 mg of prednisone and in 6 hours I was a new man. I consider prednisone a miracle drug. As I have mentioned before on this blog, I have been on and off prednisone for all this time, mainly on. Now I am on Kevzara and 2.5 mg prednisone. My platelets are dropping, so I am not sure how long will be on Kevzara.

@pmr2026
Welcome, but sorry about your PMR. Everyone here tries to help and support eachother and it really helps to know we're not alone!
Don't know, as I've never used Methotrexate and never heard of a "steroid injection" for PMR, and I'm relatively new to PMR (7/31/26).
But I've read some pretty concerning things from people who have taken Methotrexate. I'm not a Dr, and this is not medical advice, but you could try to educate yourself as much as possible about Methotrexate and it's side effects? Also, a lot of people here may have better information to help you. I don't know if it had anything to do with your heart racing to 150 or not. Was this the same time as the"steroid injection?" Maybe it was a combination of both if it was? I hope you can get better help than mine comments. Hope you get good relief and can get off any meds as soon as your body allows. Blessings.