What justifies an increase in prednisone?

I would be prepared with some questions. I understand todays Dr visits are about 15min and about half that time is explaining to her PA. I generally find women Dr's are not quite so stuck on their opinion and will consider your feedback. Not all but generally. I will say that at Mayo they spend considerable time understanding your symptoms and testing for them. I had a male Dr that was very pleasant and made sure that we understood each other.

Kevzara and Actemra are new biologics that insurance may cover. Usually if you have tried methotrexate first. That might be old information. The biologics inhibit the IL-6 marker that they have determined to be active in PMR. Methotrexate is older cheaper RA drug. None of these drugs work on helping to restart your cortisol. They simply try to keep the inflammation down or a PMR restart while you are tapering. They can take up to a couple of months to start working. They are usually prescribed with steroids as opposed to either or. Once you are off prednisone you can generally stop taking Kevzara. About 5 ml is your daily requirement of cortisol that is being supplied by prednisone. After 8 years you are going to have a very difficult time to taper below. You may also need an endocrinologist on your team. Adrenal insufficiency is going to be your challenge. Your flares are going to be from AI more than PMR. They can restart PMR. So the Kevzara may not help. Many it does not. If you look at the black box warnings on prednisone those are not any better and you have taken for 8 years. I would say some risk is worth it. Dadcue on this site was has been on and off steroids most of his life. He used Actemra and was finally able to stop. Your risk will be they move you to hydrocortisone as a maintenance dose the rest of your life. Prednisone is not your friend. More like an invited house guest that wont leave.

"None of these drugs work on helping to restart your cortisol."

I mostly agree with this. However, I think IL-6 inhibitors "indirectly help" the problem with adrenal insufficiency. The only thing that "directly helps" the adrenals is to maintain a lower dose of prednisone for an extended period of time. When I was stuck on 10 mg of prednisone, my endocrinologist said there wasn't anything that would help with adrenal insufficiency as long as I needed that much prednisone. A prednisone dose of 3 mg or less was what my endocrinolgist said was needed before my adrenals would begin to respond. She said I should come back to see her when I could stay on 3 mg of prednisone for an "extended period of time." Taking only 3 mg of prednisone seemed impossible to me at the time.

My endocrinologist referred me back to my rheumatologist to see if my prednisone dose could be lowered. Another year elapsed before Actemra was suggested to me. I don't think my rheumatologist cared that much about my adrenal function. My rheumatologist just said I was "too young' and "too healthy" to take prednisone for the rest of my life. I thought he was joking about me being young and healthy because I was 64 years old and I rated my health as poor.

In any case, my rheumatologist told me about Actemra a year after I saw the endocrinologist. I was interested in a biologic but I only knew about TNF inhibitors like Humira. My interest in TNF inhibitors was because of being diagnosed with reactive arthritis and uveitis. TNF inhibitors are used for both of these conditions rather than long term prednisone. My rheumatologist said there were 2 possibilities for biologics that I could try but he wanted me to try Actemra first. He didn't say what the 2nd option was but I later learned it was Humira.

Reactive arthritis and uveitis weren't active. My medical records only said I had a "history of" both of these conditions. Reactive arthritis and uveitis were a distant history and thought to be in remission and/or cured after I started taking prednisone every day. PMR was thought to be my primary problem and that was what prednisone was treating.

I didn't really want to take Actemra mostly because I had never heard of it. I was hearing bad things about Actemra. Other people were saying there was nothing wrong with taking prednisone for the rest of my life. It was all about the "quality of life" prednisone was giving me which seemed absurd to me. I wanted off prednisone more than anything because of what I had learned about adrenal insufficiency from the person who had the adrenal crisis.

Without going into details, Actemra allowed me to quickly taper down to 3 mg. My rheumatologist ordered me to stay on that dose because of a low cortisol level. I was referred back to the endocrinologist who took over my prednisone prescription. My endocrinologist told me what I needed to do but mostly I needed to stay on low dose prednisone. Only when my cortisol level improved did she tell me to discontinue prednisone.

Since Actemra allowed me to maintain a low dose of prednisone for six months until my cortisol level improved, I tend to think Actemra helped me indirectly with adrenal insufficiency. Actemra didn't suppress my adrenal function like Prednisone did.

BTW, as soon as I got off Prednisone the first time, I had a massive flare of uveitis. Actemra was stopped by my opthalmologist who said Humira was the optimal treatment for uveitis. Humira might have worked for uveitis except my PMR symptoms returned. That was when my rheumatoloist gave me the choice between Humira or Actemra but not both. I chose Actemra instead of Humira.

My dr said nothing about actemra only methotrexate and kevzara. Can you provide a clearer picture of what they’re for and what they do?
My dr is never clear on it and just gives me paperwork.

How did you get a Mayo dr?

My rheumatologist prescribed Methotrexate as an addition to the prednisone because of the achy sore hands and upper arms I have in the mornings. The tapering of the prednisone is still occurring monthly for me. Started on 20 mg 4 months ago and down to 10 mg. The Methotrexate can take up to 12 weeks to work so we shall see! My Primary Care Physician told me he could treat me if I wanted and I didn't need to see a rheumatologist. He said you just need a good Internist. So, you could seek out a second opinion from a Doctor who is experienced in treating PMR if you are short on rheumatologists in your area. You might also consider sending a message through your portal or calling the nurse to explain that, since your visit, you've been concerned about the new dosage and would like to discuss further. Sometimes I think they have so much on their plate that we have to drive our point hard so they understand what we are actually trying to say. Good luck to you and everyone here!

"None of these drugs work on helping to restart your cortisol."

I mostly agree with this. However, I think IL-6 inhibitors "indirectly help" the problem with adrenal insufficiency. The only thing that "directly helps" the adrenals is to maintain a lower dose of prednisone for an extended period of time. When I was stuck on 10 mg of prednisone, my endocrinologist said there wasn't anything that would help with adrenal insufficiency as long as I needed that much prednisone. A prednisone dose of 3 mg or less was what my endocrinolgist said was needed before my adrenals would begin to respond. She said I should come back to see her when I could stay on 3 mg of prednisone for an "extended period of time." Taking only 3 mg of prednisone seemed impossible to me at the time.

My endocrinologist referred me back to my rheumatologist to see if my prednisone dose could be lowered. Another year elapsed before Actemra was suggested to me. I don't think my rheumatologist cared that much about my adrenal function. My rheumatologist just said I was "too young' and "too healthy" to take prednisone for the rest of my life. I thought he was joking about me being young and healthy because I was 64 years old and I rated my health as poor.

In any case, my rheumatologist told me about Actemra a year after I saw the endocrinologist. I was interested in a biologic but I only knew about TNF inhibitors like Humira. My interest in TNF inhibitors was because of being diagnosed with reactive arthritis and uveitis. TNF inhibitors are used for both of these conditions rather than long term prednisone. My rheumatologist said there were 2 possibilities for biologics that I could try but he wanted me to try Actemra first. He didn't say what the 2nd option was but I later learned it was Humira.

Reactive arthritis and uveitis weren't active. My medical records only said I had a "history of" both of these conditions. Reactive arthritis and uveitis were a distant history and thought to be in remission and/or cured after I started taking prednisone every day. PMR was thought to be my primary problem and that was what prednisone was treating.

I didn't really want to take Actemra mostly because I had never heard of it. I was hearing bad things about Actemra. Other people were saying there was nothing wrong with taking prednisone for the rest of my life. It was all about the "quality of life" prednisone was giving me which seemed absurd to me. I wanted off prednisone more than anything because of what I had learned about adrenal insufficiency from the person who had the adrenal crisis.

Without going into details, Actemra allowed me to quickly taper down to 3 mg. My rheumatologist ordered me to stay on that dose because of a low cortisol level. I was referred back to the endocrinologist who took over my prednisone prescription. My endocrinologist told me what I needed to do but mostly I needed to stay on low dose prednisone. Only when my cortisol level improved did she tell me to discontinue prednisone.

Since Actemra allowed me to maintain a low dose of prednisone for six months until my cortisol level improved, I tend to think Actemra helped me indirectly with adrenal insufficiency. Actemra didn't suppress my adrenal function like Prednisone did.

BTW, as soon as I got off Prednisone the first time, I had a massive flare of uveitis. Actemra was stopped by my opthalmologist who said Humira was the optimal treatment for uveitis. Humira might have worked for uveitis except my PMR symptoms returned. That was when my rheumatoloist gave me the choice between Humira or Actemra but not both. I chose Actemra instead of Humira.

@dadcue
Your experience mirrors my own. I began 15 mg of Prednisone on April 15th, prescribed by my PCP, about a week after PMR hit me hard out of nowhere. After a month I saw my rheumatologist, and after he got extensive blood work completed and my hematologist cleared me of any other issues, I was diagnosed with PMR and started to taper while receiving a monthly infusion of Actemra. I went from 15 mg to 10 mg on June 15th, then down to 7.5 mg on July 15th and down to 5 mg two weeks later. He originally wanted me to go from 10 mg to 5 mg, but I did have a tough flare 3 days after going from 15mg to 10mg, so he suggested the 7.5 mg level for two weeks, and then drop to 5 mg. He indicated that putting me on Actemra not only assists in my tapering but would help ensure I didn't migrate to GCA. I've had some minor increases in body pain during this time, but just "aches" at level 1 or 2, not the level 8 to 10 pain I was suffering during the first couple weeks of PMR.
After reading extensively on Mayo Connect and other medical papers, I did question my rheumatologist why I was tapering so quickly, as so many of the comments I read suggested tapering once a month from 10 mg to 9 mg, then 8 mg, etc. He said that was the historical recommendations, but the latest science of PMR was to taper as quickly as possible until you get to 5 mg or less. In that way you can better avoid the numerous negative side effects of prednisone, with an ultimate goal of getting off of the drug.
I now understand that everyone's journey with this debilitating disease is unique, and I am very thankful that I've been able to taper this quickly, and hope that I can get to 2.5 mg next month, and then consider stopping entirely. And hoping that my adrenal glands will be "restarting" at sufficient levels and I do not have to resume any levels of Prednisone.
I did learn and my rheumatologist confirmed that it was recommended that I take my prednisone doses with an eye towards my circadian rhythms, which for most men are strongest in the 6 AM to 10 AM time frame. When I originally started on 15 mg of prednisone I was taking 5 mg every 8 hours. But when I dropped to 10 and 7.5 mg, I took approx 2/3rds in the early morning and the other 1/3 in the early evening, minimizing the "sleeplessness" side effect. Now that I'm at 5 mg, I take 100% of that in the early morning. Seems to be working for me.

What’s your discomfort level at 5 mg?