Glucocorticoid-induced Adrenal Insufficiency

The Charity PMRGCAUK held its AGM this week and had 3 speakers - endocrinologists talking about PMR, adrenal issues, tapering and adrenal insufficiency etc. It was truly enlightening. The link to the stored lectures online is at this link ..................https://us02web.zoom.us/rec/share/fFg4vQEqgC1Qj-mhGO952K0MTaJ0EaIPyzGQZWHWzGQnB-7_UqvKu7HobaK_CpZ4.bGNw23xkXWO3Lemm
And the Passcode to get into it is : Z.SEL7bt
If you can't open this link do consider contacting https://pmrgca.org.uk/ direct and ask to have access to these lectures. Very useful.

@bettebaldwin

Thank-you for the link. I didn't have any problems with the passcode. I haven't watched the whole video yet but it seemed like it was presenting some good information. I remember bringing up the problem with steroid induced adrenal insufficiency years ago on the PMR forum in the UK but it wasn't well received. Patient education is needed.

The problem I had with prednisone induced adrenal insufficiency explained why it was so difficult for me to taper off prednisone even though I was told it had nothing to do with it. I still don't know what can be done about it but I'm glad I listened to my doctor's advice. I'm also glad this presentation relied on the medical experts in the UK rather than patient experts. One particular patient expert said there wasn't anything wrong if I needed to take prednisone for the rest of my life. I sincerely believe that alternative medications which don't suppress adrenal function are needed for PMR/GCA and should be encouraged rather than discouraged.

@dadcue
One of the speakers - Alessandro Pretti - is an endocrinologist who is also one of the authors of the paper you shared.
PMRGCAUK are certainly pushing the issue of endocrinology as a key clinical discipline needed to be included in PMR GCA management. Hence highlighting it through talks at the AGM. I found the talks fascinating to learn that its not until one is at around 5mg in tapering that the balancing between our own natural adrenal function returning and the continued reliance on glucocorticoids is a real issue for consideration ie the need to recognise if the return of symptoms is to do with tapering or adrenal insufficiency. The treatment (and urgency) is quite different. Also the need to take a little boost of steroid if one has flu or a trauma or an operation etc. to keep the immune system responsive. I can also understand now, how, it could be my adrenal glands are damaged beyond repair and I may need low dose steroid for the rest of my life. That's fine and I'm grateful to know that option exists.
All of this emerging endocrinological knowledge and research helps, in my opinion, to move PMR away from being treated as a 'disease' that is 'cured' by taking steroids for a year or two. It has much deeper metabolic roots which need dealing with - the steroids are just a temporary sticking plaster.

This is a very interesting article and I'm still wading through it. It's so import ant we really understand as best as we can what is happening inside our bodies. It actually helps me take some of the 'mystery' out of dealing with PMR.

@bettebaldwin

I agree with you about everything although my outcome is different. I had personal experience with adrenal insufficiency after being on prednisone for more than 12 years to treat PMR. It has been more than 5 years since my last prednisone dose. I recovered from adrenal insufficiency and I haven't had any PMR relapses. Technically, I still have PMR and my treatment for PMR is ongoing without prednisone.

My PMR journey was very long and arduous but now I'm in a better place. For many years I was stuck in the doldrums. It wasn't a good place because of all the flares. Even on the calm days, I was slowly wasting away not to mention all the new onset prednisone side effects. My quality of life wasn't very good.

I was encouraged that the rheumatologist, endocrinolgist and nurse in the UK sounded exactly like my doctors here in the USA. My doctors weren't experts but their message was the same. After PMR was diagnosed, my treatment was to take prednisone, achieve remission, and then, after a year or two, taper off prednisone. That was the plan anyway.

The treatment plan for PMR/GCA with prednisone is fundamentally flawed in my opinion. There is room for improvement. The plan works for half the people but the other half struggles. The back-up plan is to continue prednisone, taper more slowly and wait for PMR to burn itself out. This is the stage where something needs to change. I didn't take prednisone for 2 years only to find out I might be dependent on prednisone. My doctors said that wasn't the outcome we were striving for. They started Methotrexate, Leflunomide and every alternative to prednisone they could think of. The goal was to discontinue prednisone eventually.

Eventually came for me in 2019 when Actemra (tocilizumab) was tried. That was when I parted ways with the PMRGCAuk forum. The forum is excellent and we all seem to share the same experiences.

There wasn't much support for biologics because prednisone was the "only option" and my doctors in the USA were "breaking the rules." It was better to take the "devil I knew" instead of Actemra. As I later found out, Actemra was not a devil at all.

I found out it was relatively easy to quickly taper to a lower dose prednisone with Actemra onboard. I got out of the doldrums and made some progress. Things were going in the right direction.

Recovery from adrenal insufficiency was the next battle. I stayed on 3 mg of Prednisone for a long time while I waited for my adrenals to recover. Notice the parallel to "wait for PMR to burn itself out." However, the adrenals won't recover on too much prednisone!

In any case, I learned the difference between symptoms of PMR and adrenal insufficiency because Actemra prevented PMR flares. I still had some pain and discomfort so it wasn't completely gone. My endocrinologist said I should resist the urge to take more prednisone but I could if I needed to. My adrenals started to recover while I was able to stay on 3 mg of prednisone. My adrenals fully recovered after prednisone was discontinued.

None of the above was as easy as it sounds. It took at least two years for my adrenals to recover from prednisone as my symptoms of adrenal insufficiency slowly resolved. Prednisone side effects slowly improved too. I was able to discontinue other medications that were treating my side effects from long term prednisone use.

I think the advocacy for PMR/GCA needs to change from "long term" prednisone to "alternatives" to prednisone. I admit there is a long way to go still. I think the concept is being embraced more readily in the USA.

@dadcue , I just finished watching the video. The one question I still don’t have an answer to, is why I’m having adrenal insufficiency symptoms @ 9.5 mg of prednisone daily. The symptoms discussed in the video for withdrawal syndrome don’t fit my symptoms but the symptoms discussed for adrenal insufficiency do and border on an adrenal crisis. Yet, as I understand it, all the specialists are saying the same thing; no adrenal crisis if you’re taking 5 mg daily.

@staylorrn2000

I think the intent was to alleviate the fear of an adrenal crisis. Patients become too worried about everything and are afraid to decrease their prednisone dose. It wasn't that I wanted to take prednisone. It was the fear of what would happen if I didn't take prednisone. It just occurred to me that PMR is like a terrorist and the possibility of an adrenal crisis might be the same way.

Doctors get frustrated with patients who increase their dose for all kinds of reasons --- even going on vacations! If you recall the endocrinologist on the video said to take extra supply of prednisone with you on vacation but he didn't say to actually take the extra pills orally. There is a difference that sometimes gets lost in translation.

I was the same way and I was very fearful. I needed a lot of reassurance that nothing would happen to me as I tapered off prednisone. When I stopped prednisone, I told my endocrinologist it was going to be a "leap of faith." She said I shouldn't worry because she would catch me. If she wasn't around to catch me, she said I could restart prednisone "for any reason" if I felt the need but we would have to discuss if more prednisone was necessary later.

I think an adrenal crisis can happen on doses greater than 5 mg of Prednisone but I would agree it is unlikely. My endocrinologist said "extremely stressful situations" like a car wreck or something worse could trigger an adrenal crisis. She said "healthy adrenals" are capable of producing 10 times the amount of cortisol in extremely stressful situations compared to the cortisol needed on low stress days. Our adrenals aren't healthy when we take prednisone.

My endocrinologist would never recommend increasing my prednisone dose 10 times higher but I did that once! I went from 10 mg to 100 mg one time. I told my primary care doctor the circumstances and he wanted to know if I was sure 100 mg would be enough!

This is why you need to have "contingency plans" in place but it would be impossible to plan for every contingency. The relationship with your doctor has to be rooted in trust. So many things can undermine that trust and fear is what tends to undermine that trust. Sometimes it is hard to find a doctor that you trust. I trusted most of my doctors more than what gets said on the internet.

There are so many other conditions where the symptoms overlap with both PMR and adrenal insufficiency. It would be best to talk to your doctor for help with sorting that out. I had to learn that increasing Prednisone was much easier than decreasing prednisone because of all the fear that had built up over my years on prednisone.

Gosh @dadcue ! What a long journey you’ve had and NO WONDER you’ve been in the doldrums! Who wouldn’t have been. As you say the role for DMARDS and the new Biologics is a really important one. Sounds like it is further advanced in the USA but certainly seems to be making strides in Europe. Cost is inevitably a key issue. Certainly in the UK and the NHS.
Can I ask @dadcue…. During your long experience did you get - go find -
support around nutrition, exercise, lifestyle etc? You’ll have seen I’m looking hard to ‘heal’ or probably more accurately strengthen my HPA Axis to support the adrenal glands. Also to reduce inflammation. Did you pick up any tips along the way?

@dadcue , there’s no question that fear plays into my situation, especially since I passed out twice on July 12th with no known etiology. I seem to do better on Actavis brand but they don’t make 2.5 or 1 mg tablets so I was having to mix with Strides and also break tablets which never break evenly no matter how careful one is. So my endo just switched me to all Strides to see if that will make a difference. Today was my first dose of all Strides and now even after eating first I get to add nausea to the list. This seems to be never ending. Hopefully my system will adjust to the Strides and maybe eventually being in just manufacture and not having to break so many pills will give some stability so I can continue the taper more smoothly. I know they say inactive ingredients aren’t supposed to make a difference but my endo said their are 2 possibilities related to that, one is absorption and the other is intolerance to one or more of the inactive ingredients.
Have you had any experience with mixing manufacturers and not being able to take an exact dose because of pills breaking unevenly?

@bettebaldwin

I probably did everything wrong when it came to nutrition and lifestyle mostly because I was a nurse but now I'm retired. Stress was a constant, irregular shift work, no breakfast or lunch most of the time being the norm.

I tried to exercise as much as possible but that became more difficult as time went on. I quickly learned that taking prednisone so I could exercise wasn't a good idea.

There wasn't much I could do about everything. I worked as a nurse until I was 62 but felt guilty when I retired. In the USA, 62 is considered an "early retirement age" for the purpose of receiving Social Security retirement benefits.

It was funny because I applied for "disability" so my retirement benefits wouldn't be reduced. If I was disabled my Social Security benefits would be the same if I had waited until I was 65. My application for disability was approved retroactively. Based on my medical records they said I was disabled before I applied for disability but they could only go back retroactively for 12 months. The Social Security Administration limits retroactive disability back pay to a maximum of 12 months before the application date by law, no matter how early my medical records showed my disability began.

I would be remiss to say PMR was my only problem but prednisone worked reasonably well for all my medical problems. I had other medical conditions which were indisputable which my doctors said were not treated with prednisone. I maintained that prednisone worked better than all the other medications which were offered to me to treat those other conditions.

I would laugh when my rheumatolgist asked me about headaches and visual changes while she checked me for GCA. I said she must be kidding me because she knew I had uveitis and trigeminal neuralgia --- how would I know if I also had GCA?
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
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I used up all my sick leave and paid vacation time having a couple of corrective surgeries prior to retirement. Both my knees were replaced. I also had brain surgery to stop the pain from trigeminal neuralgia. Those surgical interventions helped me to significantly reduce my Prednisone usage.

When I retired, I had to change doctors to get all new doctors. My former doctors did everything they possibly could for me. It was a sad day because I liked and respected all of my doctors. However, when one door closes a new door opens. The new rheumatologist I saw for the very first time said he knew everything about me. He had already confirmed everything with my former rheumatologist so there was no need to discuss "my history." He simply said I was "too young and too healthy to take Prednisone for the rest of my life." I thought he was thinking I was someone else.

In any case, my new rheumatolgist said the financial constraints were not the issue anymore. He just wanted my commitment to try Actemra if he could get it approved for me. The consensus of people who knew something about Actemra at the time said it would never be approved. However, my rheumatologist said Actemraa represented my best chance of ever getting off prednisone. He based his opinion on the results from the GIACTA study. There was never any guarantee provided ... just a chance and an "educated guess" that Actemra would work for me

That was when I got negative feedback about Actemra. I almost backed out of my commitment to try Actemra until my rheumatologist said I wouldn't know if Actemra worked or not unless I tried it to see. Had I listened to all the negative feedback, I probably would still be taking prednisone. I think the quality of life on long term prednisone for PMR might be overrated compared to some other biologics that are currently available.

As best as I can tell ... doctors in the UK are in agreement. Sometimes doctors need more credit than we patients give them. I would always tell my doctors they knew more than me. Sometimes they would stop telling me stuff because they assumed I already knew. There are more things about medicine which nobody knows compared to that which is known.
https://academic.oup.com/rheumatology/article/64/Supplement_1/i48/8069400