Biologics, pmr, tapering prednisone, and adrenal insufficiency

Question #1---The biologic is fighting inflammation, right?

The biologic decreases excess inflammation that is caused by a specific inflammation pathway but it doesn't eliminate all inflammation. The inflammatory response is actually beneficial for fighting infections and it is the mechanism the body has to heal itself from injuries.
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Question #2---If your adrenals are not functioning, you would be having adrenal insufficency symptoms?

Probably true ... however, adrenal function ranges from poor to good with everything in between. It isn't an all or nothing type of thing. Complete adrenal failure doesn't usually happen when we take prednisone. Adrenal suppression from prednisone isn't the same as adrenal failure.
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Question #3 Biologics have nothing to do with adrenals?

This is debatable in my opinion. Biologics generally don't suppress the adrenals or stimulate the adrenals. However we take a biologic as a "steroid sparing medication" which allows the adrenals to recover from the adrenal suppression that prednisone causes. Reducing prednisone decreases adrenal suppression so the biologic facilitates adrenal recovery because we need less prednisone.
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Question #4---What are the chances you would end up on low dose prednisone AND a biologic?

Sometimes but not always. In my case for example ... I was on moderately high doses of prednisone for more that 12 years to treat PMR. It wasn't easy to completely stop prednisone. I needed to tolerate a certain amount of pain and it took time, but I was able to taper off prednisone completely. I'm still doing a monthly infusion of a biologic but no prednisone for more than 5 years.

If my goal was "no pain" I wouldn't have been able to discontinue prednisone. My goal was to discontinue prednisone completely. I wanted to make a complete recovery from adrenal suppression. My endocrinologist said being off prednisone was the only way for that to happen.

I learned that increasing my prednisone dose was easy to do and I didn't need any encouragement to do that.

Decreasing my dose and eventually stopping prednisone was very difficult. I'm happy and grateful to my endocrinologist and all my other doctors who encouraged me and supported me in my endeavor to discontinue prednisone.

@pmrsuzie I wonder if you have seen this video in the discussion started by @dadcue. I think it may provide some more information on your questions and why - https://connect.mayoclinic.org/discussion/biologic-medications-video-about-how-to-decide-if-it-is-right-for-you/.

@johnbishop
I just watched the video, thanks for reposting it. And thanks @dadcue for your insight.
My PT is going well and 2 weeks til I see the rheumatologist.
I am just somewhat preoccupied about adrenals not working.

@dadcue what a great story. I always worry when I feel the pain that it will get worse if not addressed. I am now on Kevzara and at the moment 7.5 mg prednisone. I run into pain usually about 5 mg when I tried to reduce in the past. Hopefully Kevzara will get me past this point. How long did you have to wait for the pain to reduce before continuing your independence from prednisone?

@lynnfromoro

To be honest ... I didn't have any clue what I was doing when Actemra (tocilizumab) was started. Nobody knew because it was 2019 and there wasn't too much information about treating PMR with Actemra. My rheumatologist only said the research showed that Actemra was effective for GCA so he believed that Actemra "should work" for PMR too. I was asked if I would be willing to try Actemra IF my rheumatologist could get it approved.

I posted on another forum about Actemra being tried for PMR but got negative feedback although nobody had any personal experience. When Actemra was approved, I almost didn't want to try it because of the negative feedback I got. However, my rheumatologist worked hard to get it approved for me so I felt obligated to try Actemra. I started with Actemra injections every 2 weeks because my rheumatologist wanted to "play it safe."

Before Actemra was started, my rheumatologist wanted me to do a "test run. " He asked me to taper my prednisone dose as low as I could without Actemra first. I was "comfortable" on 10 mg at the time. I knew how the test run would turn out. I said there would be an "inevitable flare" at 7 mg and that was what happened so I increased my dose back to 10 mg.

After my first Actemra injection, I tapered by 1 mg per month for the first 3 months because that was my usual taper plan. When I reached 7 mg again, I wasn't sure what to do because I didn't feel any different and I didn't have a PMR flare this time. I got negative feedback from a person on other forum who was clueless even though she claimed to be a PMR expert. I was so discouraged about Actemra that I decided to get the "inevitable flare" over with. I decided to taper by 1 mg per WEEK until I reached 3 mg. I was "uncomfortable" on 3 mg of prednisone but not because of pain. The expert on the other forum said tapering by 1 mg per week was "too fast" and I needed to increase my prednisone dose. There were dire warnings about an adrenal crisis.

I was nervous about being on 3 mg of prednisone simply because I didn't inform any of my doctors yet that I had tapered down to 3 mg. I told my primary care doctor and we discussed having a cortisol level checked. When my cortisol level was low, I was told NOT to taper any lower than 3 mg until I saw an endocrinologist. My symptoms of adrenal insufficiency were mostly "overwhelming fatigue." I had widespread aches and pain too but not like a PMR flare. I still didn't know for sure if Actemra was working or not. When I asked about Actemra, my primary care doctor said it was "out of his league" but he called my my rheumatologist. My rheumatologist called me later and also told me not to taper any lower than 3 mg.

An endocrinologist was consulted and we discussed many things. My cortisol level was rechecked and the endocrinologist verified that it as low but she was "encouraged" that I had a cortisol level after 12 years of being on prednisone. She said it was a good sign that my adrenals were showing signs of recovery but I should remain on 3 mg of prednisone until my cortisol improved.

About 3 months later, my cortisol level was checked again along with an ACTH level. The endocrinologist thought my levels were "adequate" but she didn't know what would happen if I stopped prednisone. We had another long discussion about discontinuing prednisone and we made some contingency plans. What amazed me the most was when the endocrinologist said 3 mg of prednisone was a low dose and I didn't need to taper and I could simply stop taking prednisone. My rheumatologist was called to see if I still needed prednisone for PMR and he said "he didn't think so." I didn't think so either so I did what I called a "leap of faith" and stopped prednisone.
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This is the first part of a two-part saga. When I discontinued prednisone, I didn't have and PMR flare, GCA or an adrenal crisis. However, about 2 weeks later, I had to be seen urgently by an ophthalmolgist for a flare of panuveitis. I needed 60 mg of prednisone again for the panuveitis.
https://my.clevelandclinic.org/health/diseases/panuveitis

Looking forward to part II!

To all the members who have been told they are wrong by someone who thinks they know everything, think about this...

Our PMR journey is an individual journey in symptoms, treatment and outcome. I've had people tell me that I'm wrong before and I've even had someone tell me that my doctor was wrong, but no one else knows what I'm feeling besides me. My treatment is a partnership between my doctor and myself. Most of the people on this forum are knowledgeable, courteous, respectful and helpful but I don't base my treatment on their posts because my PMR is similar but different from theirs. I am very appreciative of the members of this forum for their input, advice and encouragement. I think knowing other people's journey is helpful because of the similarities but I know that mine is also different and the most helpful members realize this too. I've picked up some very valuable information on this forum but it's something I discuss with my rheumatologist. Thanks to everyone who has helped me with their words, likes and hugs. I wouldn't want to be on this journey alone.

Everyone has a different experience with prednisone too. My experience with prednisone wasn't all bad but it definitely was NOT all good either. I don't know how my doctors put up with me sometimes. My rheumatologist "encouraged me" to taper off prednisone to the extent that was all we talked about during some visits instead of PMR. My rheumatologist also insisted that PMR was still active after 10 years but I still needed to taper off prednisone. I respected my rheumatologist and we never argued about the need for me to be off prednisone. We worked toward a common goal and we eventually got there together.

One time I "accused" my rheumatologist of only prescribing prednisone to me because she thought it was what I wanted. Then I told her it was true that I wanted prednisone but it was also true that I wanted off prednisone. I wasn't sure if that was logical or not. Then I wanted her to get me off prednisone because I didn't know how. That was when I realized how little I knew.

When Actemra was tried and it actually worked for me ... a person said my doctor was breaking the rules by treating me with Actemra while insisting that prednisone was the "best option." Later I found out the same person was trying Actemra too.

@dadcue
Gotta love karma...

@dadcue Your story is amazing. You are a wealth of knowledge. Thank you for staying interested and sharing your experience.