Titration down in steroids

Sometimes it doesn't matter how slowly you taper. If your adrenals don't want to produce more cortisol when you titrate lower you will just need to take more Prednisone. However, the only way you can convince your adrenals to produce more cortisol is to take less Prednisone.

Ok thank you

I have read that it can take up to 6-12 months for the adrenal glands to fully recover after the long term use of prednisone. Also, the patient can run into problems if something stressful happens and the adrenals are not fully functional. In that case the person needs to take some prednisone to get through the bad patch. I think it would be good to discuss your problems with your doctor. The doctor can run tests to see how your adrenal glands are working, and can also recommend what to do if you start feeling worse.

Levels of DHEA have been found low in PMR patients
and other autoimmune states before treatment with
steroids. There have been repeated studies confirming
the decrease leading to speculation it may contribute
to disease development. It might help if DHEA were supplemented during and after prednisone withdrawal
when levels are depressed.

"I have read that it can take up to 6-12 months for the adrenal glands to fully recover after the long term use of prednisone."
----------------------
That was consistent with my experience after long term prednisone use. However, my endocrinologist said I had to stay on a low dose and wait for my adrenals to recover. She defined a low dose was approximately 3 mg because it wasn't safe for me to taper any lower.

I was on 3 mg for 6 months and felt miserable. Fortunately I didn't have a PMR flare. I guess my adrenals were making just enough cortisol to regulate my baseline inflammation. A steroid sparing medication which didn't suppress my adrenal function was keeping the excess PMR inflammation in check.

Sometimes the textbook says it can take 1 month for the adrenals to recover for every month we are on prednisone. I don't think this is true. I was on prednisone for 12 years and it didn't take 12 years for my adrenals to recover. However, I'm still not sure my adrenals have "fully recovered."

Cortisol levels fluctuate based on circumstances related to the amount of stress we are under. The more stress we have, the more cortisol we need. When we replace cortisol with prednisone the same thing applies. The more stress we have the more prednisone we need.

When I stopped prednisone my endocrinolgist said, "I should take prednisone again for any reason if I felt the need." She had no way of predicting the amount of stress I would experience going forward after I stopped Prednisone.

It raises some questions though if you start taking prednisone again once you've stopped, or even if you haven't stopped but you're having symptoms of adrenal insufficiency. Like, how much prednisone should you take, and for how long, and then how do you reduce again? I've read that you can increase the prednisone dose for as much as 2 weeks and can then safely return to the original dosage level without having to taper. These are questions you can ask your doctor before tapering or when you run into problems.

"It raises some questions though if you start taking prednisone again once you've stopped, or even if you haven't stopped but you're having symptoms of adrenal insufficiency...."
---------------------------
I found out that I could live with adrenal insufficiency symptoms although I didn't feel very peppy. I also had some pain that I could tolerate. It was an adrenal crisis that was concerning but that likely wouldn't have happened unless something catastrophic occurred.

It does raise more questions than answers. There is no best way to taper off prednisone. There isn't any proven way that will work for everyone. It was a miracle I got off Prednisone after so many years. My endocrinologist wasn't overly optimistic that I could.

Taking Prednisone was an easy thing to do. I didn't need any encouragement to do that. I needed tons of encouragement to taper off Prednisone. Fortunately, my doctors were a big help to me in that regard. The hard part was finding an alternative to Prednisone.

I couldn't get below .5 mg with out suffering PRM systems; that's when my rheumatologist suggested Kevzara. I'm totally off Prednisone and pain free for a year and half. Has anyone experienced Kevzara titration?

Excellent ... I'm happy Kevzara is working.

Im new to PMR and all this is very eye opening. I’m beginning tapering and am at 25mg now. I’m curious what the alternative to prednisone is that you found?