Hydrocortisone

@dadcue Thanks - that is all very insightful. You had a lot of experience with a very successful outcome. Sounds like you had a very good doctor in your endocrinologist.

I think one of the issues for those of us who are outside the US, is that we have limited access to the biologics and no access if we are diagnosed with PMR only. In Australia, we often have to get our diagnosis "changed" to access Actemra and Kevzara is even more limited. Some of it is about cost to our national health system as a lot of the medicines are substantially subsidised by the government, but more so it seems to be an exceedingly cautious bureaucratic system that insists on local testing to establish safety and efficacy for each potential condition, even if other countries' bureaucracies (E.g. FDA) have done this extensively.

@spainishlady

Just for context ... I was doing Actemra (tocilizumab) injections every two weeks when I successfully discontinued prednisone. I started Actemra injections on January 1st, 2019. I tapered off Prednisone in early 2020. Everything I thought I knew came from another patient forum but not Mayo Connect. The endocrinologist suggested that I shouldn't listen to what was being said on the other patient forum. She said it was unsafe to stay on prednisone for the rest of my life unless my adrenals were "permanently suppressed."

No "slow taper" was going to allow me to taper off prednisone if my cortisol level stayed low. Tapering off Prednisone needs to be "individualized" and context is important. For more context, I was on prednisone for 12+ years and mostly at a dose greater than 20 mg after starting at 35 mg when PMR was diagnosed at the age of 52. My 12+ years on Prednisone were characterized by countless "PMR relapses" mostly when I reached 7 mg of Prednisone but I was more comfortable on 10 mg. My rheumatologist said I was "too young" (64) to stay on Prednisone for the rest of my life. He also said I was "too healthy" but I disputed that after being on Prednisone for 12+ years.

Flaring repeatedly at 7 mg suggested I needed prednisone for adrenal suppression more than PMR. The pain and overwhelming fatigue caused by a low cortisol level mimics PMR and is worse than PMR but it is almost impossible to separate the two types of pain. The endocrinologist knew more about the symptoms of adrenal insufficiency than my rheumatologist and I did.

It was a long process for me to discontinue prednisone. The endocrinologist suggested many things to me. The best suggestion was when I was told to stay on 3 mg. That dose was low enough to allow my endocrinologist to get a good read on my a.m. cortisol level. It was also a low enough dose for adrenal recovery to begin.

When my cortisol level was low, the endocrinologist said there was no point in reducing prednisone any lower until my cortisol level improved. She said 3 mg was a low enough dose to allow my adrenals to begin to recover. I needed to resist the urge to increase my dose. She said a low dose of prednisone was essential for adrenal recovery and I was going to be "uncomfortable" for a while.

Six months later after I stayed on 3 mg, my a.m cortisol level was "adequate." That was when I was told it "might be safe" to discontinue prednisone. No taper was needed as long as PMR was under control AND my cortisol level remained adequate. I want to emphasize that BOTH conditions needed to be met.

I have learned that Actemra isn't a devil compared to prednisone. Actemra has prevented PMR relapses for 6 years and doesn't suppress my adrenal function like prednisone did. My adrenals made a "full recovery" during the first year or two after I tapered off Prednisone. I'm currently doing a monthly IV infusion of Actemra for multiple autoimmune conditions and not only for PMR.

If it helps you ... my endocrinologist said that ANY cortisol level after 12 years on Prednisone was an encouraging sign. I would have to look it up but my cortisol level was under 300. Don't lose hope of discontinuing Prednisone.

@dadcue goodness me a remarkable story I hope you remain well and stable now . My problems seem somewhat insignificant . I think
You are absolutely right we cannot be lumped together regarding certain aspects of treatment , I also feel on another well respected forum there is a strong view that remaining on Prednisolone for life is acceptable , I do not .
I am undecided about the switch to HC but will be making that decision next week . I can honestly say I have never reached an even status since going below 7mg , that’s not with pain but fatigue , nausea and insomnia .
My Endo is highly regarded private Dr so I guess , as I need to do something , I should give his plan a go . My GP is on board and will test my morning Cortisol each month .
Interestingly my Endo also suggested Vit B12,Folic Acid and D3 along with my Calcium . His rational was that although my bloods are in range in his opinion the potential damage to muscles , cells etc could do with a boost .
Thank you all for sharing

@gmdb

People in the USA have some of the same obstacles. Doctors can prescribe whatever they wish but getting an insurance company to pay for it is another matter. The "exceedingly cautious bureaucratic system" is such that newer medications have to be "FDA approved" for the condition being treated. Our government is the entity that approves medications but doesn't control how they can be prescribed. However, an insurance company can refuse to pay for a medication the isn't FDA approved for the condition being treated on the grounds that it is "experimental."

My case with Actemra treatimg PMR was somewhat unique at the time because Actemra wasn't FDA approved for PMR like Kevzara currently is. Actemra was FDA approved for GCA back in 2017 but not for PMR. I started Actemra to treat only PMR in 2019. My rheumatologist wanted me to try Actemra for PMR and told me it represented my "best chance" of ever getting off prednisone. No rules were broken.

My health care is provided by the US government at no cost to me. That is hard to explain because I don't work for the US goverment. My health care is a benefit that I receive for being in the military a long time ago but I don't have any other connection to the US government.

My rheumatologist didn't fabricate or change my diagnosis in any way. The goverment has all of my medical records. My rheumatologist petitioned the authorities so that I could receive Actemra. I didn't expect Actemra to be approved. The approval was with the stipulation that I be treated "as if" I had GCA. I don't pay anything for Actemra because it was authorized by a panel of doctors who worked for the federal government.

Part of the reason Actemra was approved for me was that it was deemed to be cost effective given my bad experiences with being on long term prednisone. The adverse effects of long term prednisone use are well documented in the medical research done all over the world. That documentation was also used to justify Actemra for me.

Actemra was started without any evidence it would work for PMR as long as I was willing to try Actemra. I was originally approved to receive a monthly infusion of Actemra but when it was time to start Actemra my rheumatologist changed his mind. He literally said I would start with an injection every 2 weeks to "play it safe."

I wasn't ever part of any research study but there is a lot of training that happens in the government provided health care system that I am part of. I am seen by new doctors fresh out of medical school but they are supervised by more experienced doctors. The experienced doctors quiz the newer doctors while I'm asked questions. I feel like I am being trained too but mostly I just correct things about my symptoms that aren't accurate. Every rheumatology visit takes about an hour and many things are discussed.

@dadcue Thanks - that is all very insightful. You had a lot of experience with a very successful outcome. Sounds like you had a very good doctor in your endocrinologist.

I think one of the issues for those of us who are outside the US, is that we have limited access to the biologics and no access if we are diagnosed with PMR only. In Australia, we often have to get our diagnosis "changed" to access Actemra and Kevzara is even more limited. Some of it is about cost to our national health system as a lot of the medicines are substantially subsidised by the government, but more so it seems to be an exceedingly cautious bureaucratic system that insists on local testing to establish safety and efficacy for each potential condition, even if other countries' bureaucracies (E.g. FDA) have done this extensively.

Any comments on Tyenne for PMR?
Thank you

@abd I have been on Actemra for years with good results. Last October my insurance company decided to deny coverage and said I should switch to Tyenne. I tried to persevere, but I was having side effects like large bruises at the site of injection and rashes that lasted right up to the next date of injection. I was also having increased flare-ups of my RA. I have PMR, GCA and RA. The only thing I can come up with for the difference between Tyenne and Actemra is that they probably have to change something in the make-up of the medication so they won't be copying Actemra's formula. I'm not a doctor, so I can only theorize. It may not affect you in the same way. It's certainly a lot less expensive.