What steroid dosage did you start on? Did you find the right dosage?

Wow, I am sorry to hear about what you are enduring! I agree with you that the back pain is the worst - I too had that and almost went to the hospital. How long have you had PMR? Do you think all these other issues you are having are as a result of the Prednisone, the PMR, or did you have some before? So it also sounds like people might reach 100% in the beginning with the Prednisone treatment but it may not last which is discouraging. Thank you for sharing. I hope you get this under control.

Thank you for sharing this. This sounds somewhat encouraging that you are enjoying an active life. However I was led to believe by doctors that this can resolve itself in about 2 years average time. I am since learning from this group that many have relapses or go into remission and then it comes back. So I guess it never really goes away. disturbing. I read in one of the forums that taping at 1mg per month or perhaps even better 10% (I think?) per month is the key. Good luck to you!

Thanks for your reply! I believe the prednisone is causing the diabetes to be greatly heightened, the BP to elevated like it is and possibly the muscle pains in the back nad increased renal insufficiency. I was diagnosed July 2021 and have been on steroids since then. I have quite a rigorous health history that includes treatment for pancreatic cancer that is now 6 years in remission when I was given 2 months to live back then! I am sure the chemo had an impact on my health but not the PMR. I am with the help of my doctors, going to get off the steroids...and find some steroid-sparing plan that will not be horribly toxic. The PMR I believe came as the result of the Moderna vax (2nd one). I have had 3. And the flu shot in October has greatly contributed to the inflammatory process in my body. Hoping I can get to an even keel soon as I am definitely discouraged!

I was diagnosed with Gaint Cell Arteritis. Doc said take the pills 60mg prednisone as soon as you get the drug. With jaw pain,scalp pain, neck pain it took 6 hours to achieve a pain free wonderful relief. We were at 10mg after 3 weeks or so. Then comes the real fun trying go get down from there. But that is another long story.
I now have PMR and am down yo around 5mg.
My big unanswered question is, do we prednisone people have immunity after all our Covid vaccines. Anybody know? Please?

2 years is almost best case. Average according to Mayo studies is 5.9 years. Many doctors seem to share the 2 year figure. We have to do our own research. I've read and believe the 10% advice, but we need to pay attention to how our body responds rather than a set schedule like one month.

My rheumatologist started me on 20 mg when I was diagnosed in August '21. I could feel it working within 6 hours and within 48 hours all symptoms were gone. I had no problem tapering to 10 mg over 9 weeks but after that I have had difficulty. My MD recommended that I drop 1 mg every 3 weeks. At 8 mg I had quite a bit of pain. It was hard to tell if it was years-old pain coming back, prednisone withdrawal symptoms, or the disease returning. I dropped to 7 as scheduled anyway and the pain continued but no worse. I decided to extend the time to 4 weeks, then dropped to 6 and symptoms improved. I can see that this business of tapering is an art rather than a science. I see my MD next month when he would like me to be at 5 mg. I thought of calling him for advice but in the end decided to just listen to my symptoms and do what felt right as long as I am not deviating widely from what he recommends. From what I have read the body generates about 7.5 mg of cortisol naturally, though it cuts back when the prednisone replaces it. So it seems logical to have problems decreasing the prednisone below that level, when the body has to start producing cortisol again.

Can I ask what tests were used to diagnose your Arteritis? I am having headaches but my blood tests are all normal. Thanks.

@ripley - Here's some information from Mayo Clinic on diagnosing Giant Cell Arteritis:

"The best way to confirm a diagnosis of giant cell arteritis is by taking a small sample (biopsy) of the temporal artery. This artery is situated close to the skin just in front of your ears and continues up to your scalp." -- Giant cell arteritis - Diagnosis and treatment - Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764

Started at 40 mg ---- yep -- pain free for sure --- so much energy --- now Dr. has me cut back to 5 mg --- I have no energy ---

I had a temple artery biopsy --- it came back negative