Connect
← Return to Can anyone recommend a Rheumatologist at UCSF in San Francisco?
Discussion
Can anyone recommend a Rheumatologist at UCSF in San Francisco?
Polymyalgia Rheumatica (PMR) | Last Active: Oct 27 11:16am | Replies (13)Comment receiving replies
Thanks so much. This is the second time I've had adrenal trouble, the first was 5 years ago when my GP told me to go ahead and drop straight from 2mg to 1.5mg. Now I know to do a very slow taper. I belong to the PMRGCAuk support group, where I learned how to properly taper, especially at these very low doses. I was tapering from 1.25mg to 1mg when I got in trouble this time. So four days ago I went back to 5mg, where I'll sit for 10 to 14 days, and then drop straight to 3mg, where I'll stay for a while. Yes, I should have my cortisol level checked, and just find a GP since mine recently quit. I'm interested in learning more about Actemra.
Thanks again, and good luck to you
Replies to "Thanks so much. This is the second time I've had adrenal trouble, the first was 5..."
Connect
I wouldn't listen to everything you read on PMRGCAuk. The forum with all the people sharing their personal experiences was great. The self proclaimed experts didn't know as much as they thought they knew.
My personal experience is all I share and I'm not an expert. It was amazing when my endocrinologist was able to discern the difference between adrenal insufficiency and PMR. I wasn't able to discern the difference until Actemra was tried.
It took a long time before my cortisol level improved. I mostly stayed on 3 mg of prednisone until that happened. After my cortisol level improved, my endocrinologist said 3 mg was a low dose. She said I could simply stop prednisone without tapering as long as my cortisol level was adequate.
The key for me was having an adequate cortisol level before discontinuing prednisone. I did a fast taper from 3 mg to zero in one week. My endocrinologist said I could restart prednisone "for any reason" if I felt the need. She preferred that I inform her before restarting prednisone to help me decide what to do. She gave me her direct number to call if I had any problems. She didn't require that I call her before restarting Prednisone but she wanted to know what happened. She wasn't sure what would happen and didn't make any predictions.
The other key for me was being on Actemra which controlled PMR and allowed me to maintain a low dose of prednisone. Actemra didn't suppress my adrenal function so that allowed my adrenals time to recover. The experts on PMRGCAuk advised me to increase my prednisone dose for any symptoms resembling PMR --- any pain at all. They also said it was okay to stay on 5 mg or less for the rest of my life. They didn't think my experience with Actemra was pertinent.
I have been off Prednisone for almost 4 years. I still do a monthly infusion of Actemra. I don't have any side effects from Actemra. I would like to find someone with experience with stopping Actemra. My rheumatologist says Actemra is better for me than Prednisone for the rest of my life.
The following link might be interesting to you.
"Mean prednisolone dose the last 3 months and basal P-cortisol were the best and simplest predictors of adrenal function. Most of the glucocorticoid-insufficient patients could discontinue prednisolone with appropriate treatment for adrenal insufficiency."
https://pubmed.ncbi.nlm.nih.gov/32031663/
It took me longer than 3 months to maintain a "low enough" dose of Prednisone which allowed me to discontinue Prednisone. I didn't need any advice to increase my Prednisone dose for any pain at all.