My adrenals have given up. Any advice? - PMRGCAuk

PMRGCAuk

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My adrenals have given up. Any advice?

BrenatPMR profile image
BrenatPMR

Hi everyone. I was diagnosed with PMR4+ years ago. I also have other health issues. I eventually managed to reduce to 5mg Pred using the slow taper method. When my Rheumie phoned me for a review recently I explained I was extremely fatigued and questioned whether my adrenals were struggling. She said she had not thought of that - but referred me for a synathecin test. The results - confirmed by an endocrinologist- stated that I have adrenal insufficiency. I was sent an online booklet and advice that I would need to take lifelong Prednisolone 5mg daily. I am struggling coping with the pain and fatigue . Do I increase the pred again? This site has kept me going over the past few years as I find GPs struggle with PMR. I never see or speak to the same person twice. I would appreciate hearing how others are coping?

Many thanks Bren@PMR

58 Replies

Hi BrenThere are a few Posts on the Adrenals on FAQ which l can forward for you.....

healthunlocked.com/pmrgcauk...

But the Drs will need to consider if you need Pred for the PMR as well as the Adrenal Insufficiency - it’s very important that you have a Red Steroid Card which l wrote about yesterday & it is mentioned in the FAQ - on the Adrenal Post as well as on its own.

Kind Regards

MrsN

It is very important you always carry spare Prednisolone- have they mentioned you having a Back-Up Hydrocortisone Kit?

MrsNails profile image
MrsNails in reply to MrsNails

My Mum developed Adrenal Insufficiency following long term steroids (60mg per day) because she had brittle asthma. She was off Steroids (Prednisolone) completely when she had an Addisons Crisis following a Medical Procedure, they did not follow protocol & give her hydrocortisone cover, hence a total collapse!

Her long term treatment included Hydrocortisone 3times per day but if she ever had an asthma attack/chest infection they always prescribed Prednisolone so as there was never any confusion of the dosages.

That’s why l’m always very cautious regarding Surgery/Procedures if you have any risk of low adrenal function.

Regards

MrsN

BrenatPMR profile image
BrenatPMR in reply to MrsNails

Thank you. I am waiting for a gallbladder op. I will make sure I flag up

re adrenals when I go for my pre-op.

BrenatPMR profile image
BrenatPMR in reply to MrsNails

Thank you MrsNails for your reply. I omitted to say they sent me a Red Steroid Card. No mention of a Back-Up Hydrocortisone Kit though. I will investigate that.

MrsNails profile image
MrsNails in reply to BrenatPMR

Yes, that is important incase you have a Vomiting Bug/D&V so can’t keep anything down. Usually if you have a cold or generally unwell you can manage Oral Meds but best to be prepared then hopefully you’ll never need it 🙏🏼

This is well worth reading & printing a copy of

healthunlocked.com/pmrgcauk...

Oskamilo profile image
Oskamilo in reply to MrsNails

Whats the difference between red and blue steroid cards

PMRpro profile image
PMRproAmbassador in reply to Oskamilo

The blue ones are the old ones, just a small card like a greetings card, and had space to record your dose on them. The new ones are more an advisory card, like a donor card, to tell healthcare professionals that you are a long term corticosteroid user and that they need to watch out for signs of adrenal crisis.

MrsNails profile image
MrsNails in reply to Oskamilo

Sorry l wasn’t around to reply but PMRpro has kindly answered you 😉

" When my Rheumie phoned me for a review recently I explained I was extremely fatigued and questioned whether my adrenals were struggling. She said she had not thought of that"

I think this happens so frequently. It is like doctors want people to taper off as quickly as possible but they forget some of the reasons why. I just wish that I knew about adrenal insufficiency in the beginning. I think some of my choices that I made along the way might have been different. My rheumatologist did say many times that she was afraid that I may never get off pred but she never explained why.

The other problem is that adrenal insufficiency happens so silently and it never seems to be of any concern until people reach the 7 mg level of pred. Then people wonder why they can't ever get much lower than that. That extremely fatigued feeling should be a warning sign that doctors seem to ignore.

Viv54 profile image
Viv54 in reply to DadCue

This is me atm ! Im on 6.1/2 and fighting to function properly . All i really want to do is sleep. Feel this is the worst ive been so far , stuck here fighting to have my normal life back !

PMRpro profile image
PMRproAmbassador

On a dose of 5mg it is quite likely that you will appear to have adrenal insufficiency, it is high enough to still suppress the HPA axis and production of cortisol. I think it is SheffieldJane who was deemed insufficient at 5mg but when she got to 3mg and had another test it was improving. So it is possible it WILL get better but it won't be fast. Snazzy also tells us she felt awful for a span of doses but did manage in the end.

Dr Rod Hughes, a very good PMR rheumy, likes to keep people at 5mg for up to 9 months to let the body catch up and find the rest tends to be easier.

Though I have to say, if a doctor told me they were happy with me at 5mg, I'd take the offer and run!

Longtimer profile image
Longtimer in reply to PMRpro

Still haven't had cortisol blood test, have rung hospital twice!...anyway, Max did say to me you may have to stay at 5 mg when you get there....who knows....but I was hoping for a p arty at 4 mg!!.......

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Just bring the party forwards!!!

Longtimer profile image
Longtimer in reply to PMRpro

I might just do that....👍

DadCue profile image
DadCue in reply to Longtimer

I think the party doesn't really start to rev up until about 4 months after you get off pred. On 4 mg you have no energy to party. My energy has improved greatly but at the rate I'm going it could take 4 years to begin celebrating. My endocrinologist just says that I should keep doing what I'm doing. There is still part of me that says don't overdo it. That frame of mind is hard to overcome.

Longtimer profile image
Longtimer in reply to DadCue

I`ll bear that in mind...but it is hard not to overdo, especially when we have been struggling for many years....human nature really, but we know what will happen if we do....wish other people understood it...but not a lot we can do about them...

DadCue profile image
DadCue in reply to Longtimer

My physical therapist helps me. He doubles as my personal trainer. He has me doing things that I thought I would never do again. He also shuts me down early when things aren't going well.

I see the physical therapist 2x per week so I'm on my own the rest of the time. I try to walk but I think that I should be running. Aquacise was what I really enjoyed. It didn't seem like I was doing much but it was doing a lot. There was something fun about doing 50 pull ups in the water which never in my lifetime could I do on land.

Aquacise begins again in July.

Longtimer profile image
Longtimer in reply to DadCue

Well done...

BrenatPMR profile image
BrenatPMR in reply to PMRpro

Thank you PMRpro. Problem is I’m not happy at 5.5mg Pred. I feel I need more.

GP’s tend to leave me re my dose but I don’t want to yo-yo. Contacting the Rheumy nurse could help? Feeling unsure.

PMRpro profile image
PMRproAmbassador in reply to BrenatPMR

Then try 6mg again and see if it is markedly better in terms of quality of life. As we've said- 6mg after a year is just a dream for most of us.

DadCue profile image
DadCue in reply to BrenatPMR

If your adrenals are permanently suppressed you probably do need more. I can't tell you what to do. My endocrinologist was indispensable when I was dealing with this dilemma.

Constance13 profile image
Constance13 in reply to PMRpro

What dose are you on atm Pro?

PMRpro profile image
PMRproAmbassador in reply to Constance13

IRO 15mg - keep trying to reduce but it doesn't last long!!

Constance13 profile image
Constance13 in reply to PMRpro

Hmmm! Hoped you'd had some improvement. Not easy with all your problems though.😏

How's OH coping?

PMRpro profile image
PMRproAmbassador in reply to Constance13

All much the same ...

Constance13 profile image
Constance13 in reply to PMRpro

😕

PMRpro profile image
PMRproAmbassador in reply to Constance13

Could be worse - always look on the bright side ...

Constance13 profile image
Constance13 in reply to PMRpro

Which you've been trying to do for the last twenty odd years.

PMRpro profile image
PMRproAmbassador in reply to Constance13

:)

How a Rheumy hadn’t thought of adrenal insufficiency beggars belief given that their bread and butter drugs are steroids. Personally I think giving up on your adrenal glands at 5mg is a bit premature but what do I know? My Synacthen test was done at 4mg and wasn’t very special and I didn’t need that result to know, judging by how I felt. The Endocrinologist wanted me to slowly reduce to keep challenging the adrenals to try because even 4mg he felt was still enough to keep them snoozing more than they should be. He wouldn’t even do the test at 5mg as it might not be a reliable reflection of their potential function. So of course your test might show some insufficiency but not necessarily permanently. Sure enough by about 1mg the test was much better but it still took about a year to get from 1mg to zero. Judging by what others have said here, there seems to be a variation in opinion and of course you throw in individual differences.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

In my experience most of them think that it is very rare for adrenal function not to return - whereas it is about half and half - although the half that struggle may also be struggling because of the PMR so it is difficult to decide which. But then, they also believe that almost everyone iwith RA does well on methotrexate whereas the actual figures are that for about a third it doesn't work at all and another third give up because of adverse effects ...

DadCue profile image
DadCue in reply to SnazzyD

It is just very easy and popular to increase pred back to 10 mg in order to feel better. Unfortunately, that just suppresses the adrenals even longer. The individual differences is also a factor because some people don't seem to have "resilient adrenals" as my endocrinologist phrased it.

As a general rule, nobody should be taking pred for years and years.

SnazzyD profile image
SnazzyD in reply to DadCue

I found 10mg was the time I felt best in terms of energy. I don’t know how I managed to keep going down from 7 mg as it was months of living like a shadow of myself. Just had a strong hunch that it was a necessary evil, though I wasn’t having any disease symptoms.

DadCue profile image
DadCue in reply to SnazzyD

A "necessary evil" is a good way to phrase it.

I think it is a hard to understand until you persevere and continue tapering. An endocrinologist really should be called in for guidance. I too felt like 10 mg was the best that I would ever achieve. I could get to 10 mg but I didn't get much lower until I would experience a flare or "pain crisis" as I called it. It typically wasn't like the PMR symptoms were originally.

Actemra was truly a game changer for me. My acquaintance with someone who had an experience with an adrenal crisis was almost like "divine intervention" in how it changed my thinking. My desire to get off prednisone was invigorated. It wasn't too long after that when my rheumatologist started to consider a biologic.

I do believe long term pred is like making a "pact with the devil". I don't feel guilty because it was presented like it was my only option. Maybe it was just because of trigeminal neuralgia.

Longtimer profile image
Longtimer in reply to SnazzyD

That's how I feel....

PMRPro is right. I Showed adrenal insufficiency when I was on 5 mgs of Prednisalone, once I reduced to 3 mgs my Adrenal function had recovered significantly. Your doctors seem to have given up without a fight. My Endocrinologist was prepared to treat the insufficiency and was keen to swop me to Hydrocortisone. Did your Endocrinologist just confirm the diagnosis or did they confirm that nothing could be done? It might be worth returning to the Endocrinologist to see if it can be treated.

Can I ask how long was the time between 5mgs and 3mgs with the endocrine balancing act in between? My rheumy seems to think I can drop 1mg a month until I get down to zero. I'm taking what she said with a pinch of salt.

My first Synacthen test was mid November 2019 (abnormal) on 5 mgs of Pred. my second one was February 26, 2020 well within the normal range on 3 mgs of Pred.

I think your experience supports those doctors who think one should be on a dose lower than 5 mg before having the test. Could be that some of us will not really be needing more than 5 mg from our pred and it's not till we are lower the adrenals decide maybe they should stir!

PMRpro profile image
PMRproAmbassador in reply to strawclutching

I would too - unfortunately for her theory you aren't ever reducing relentlessly to zero, you are titrating your dose to to find the lowest dose that manages your PMR symptoms as well as the starting dose did. That is by no means the same thing - and as you get lower, you also have the problem of giving adrenal function time to recover - and that rarely does so at the same rate as dropping 1mg pred per month.

I'm so grateful to this site for educating me. I used to hang on every word the clinicians spoke. But experience has taught me otherwise. You have to listen to your own body and keep asking questions.

BrenatPMR I’m now tapering 0.5 mg every 4 weeks now at 2.5mg my rhuemy has me booked in for a synacthen test when I get down to 1mg also a bone density test, my energy level seems to be improving maybe my adrenalin is kicking in I hope so!

Hi Constance 13. I’m taking 5.5 pred daily.

Hi Sheffield Jane. I just got a letter, booklet on adrenal insufficiency and a steroid card. No debate offered. From most of the comments it appears my adrenals are more resting than given up. Think I will contact hospital and try to get some more info. I do really value everyone’s advice. Thank you.

Hi cool4bob - sounds promising -👍

I have got to 5mg, at last, but the fatigue is sometimes (often) overwhelming. My plan is to stay on 5mg for 3 months and pray!

Good luck herdy sheep. The endocrinologist was asked for advice from my Rheumy - she seems to

have just thrown the towel in at 5mg. No debate about reducing further.

PMRpro profile image
PMRproAmbassador in reply to BrenatPMR

It is something you can do yourself if the PMR is happy enough. SheffieldJane had a poor result at 5g, a few months later at 3mg it was improved. You can't predict at 5mg - just slowly drop 1/2mg at a time and slowly, using a slowed taper helps, and being patient.

My rheumie asked the endocrinologist for advice. Think it’s worth requesting an explanation of the decision. Thank you for your sound advice.

DadCue profile image
DadCue in reply to BrenatPMR

You have never mentioned any personal visit with an endocrinologist nor any cortisol levels. I don't think your rheumie asking the endocrinologist for advice would be adequate to determine anything about your adrenal function. It just isn't done that way. Some endocrinologists prefer that you maintain a 3 mg dose for an extended period of time before doing a synacthen test. Then you need to hold your pred dose for a day or two. My endocrinologist relied on a.m. cortisol levels and wasn't too interested in a synacthen test.

I was on prednisone for more than 12 years and nobody threw in the towel. It was decided that I had some adrenal function when I got to a lower dose of pred although my cortisol level was very low. My endocrinologist said it would be impossible for my adrenals to recover so soon but didn't ever suggest they wouldn't recover. There were a couple of repeat cortisol levels when I could maintain 3 mg of prednisone for an extended period of time.

I got the impression that the synacthen test was more for how my adrenals might respond in a more stressful situation. Then your adrenals need to at least double their production of cortisol very quickly. It is difficult to interpret a synacthen test if your cortisol level is low to begin with. When it was determined that my a.m. cortisol level was "adequate" but low that's when hydrocortisone was prescribed for emergency situations. My only problem was that I was responsible for deciding if I was having a cortisol emergency. The card you should carry is in case you are unconscious.

Anyway, it it more complicated than your rheumie asking an enocrinologist for advise. My cortisol level was monitored for more than a year after I got off prednisone because it takes a long time for the adrenals to recover the longer you take corticosteroids. It isn't like a off/on switch. Recovery tends to happen sporadically over time after discontinuing pred. Finally, after a year, my a.m. cortisol level is high enough that my endocrinologist says there isn't any need for a synacthen test.

_charcoal_ profile image
_charcoal_ in reply to DadCue

Thanks for the information here, esp the distinction between the purposes of a synacthen test and an a.m. cortisol level test. Interesting -- feel I'm just dipping my toe in the edge of vast ocean...

Come on in, the water’s lovely!

Getting the togs on right now🌊😶🌊

Thank you. Yes I’m more inclined to try myself at my own pace. It’s a nightmare trying to get info from hospitals at the moment.

You say you are struggling with pain. You need more pred just now, not just the adrenal support dose. Have the doctors forgotten the reason you are on pred in the first place, which is to control PMR pain? Reminds me of a friend, an older man, who several health issues, including PMR which he at the time was on about 8 mg for - he had some other health crisis which involved a very large dose of pred to treat. He was in the hospital. When he no longer needed the pred for the other problem, it having resolved, they stopped all his pred. He had to remind them he was on long term pred for PMR. 🙄

The other point, touched on by PMRpro and also confirmed by others in this thread, is sometimes the adrenals don't show signs of activity at 5 mg pred, but do start to reactivate as the dose is carefully lowered.

Really finding the posts on this subject very helpful. I’ve been stuck on 5mg for maybe a year now. Just can’t get any lower. I am now waiting or a synathecin test at my rumatologist sugggestion.

My mobility is suffering. So very stiff. Getting close to needing a stair lift.

After reading all these posts I am wondering if I maybe need more pred !!

HeronNS profile image
HeronNS in reply to patrees

Unless you have a nother condition like severe osteoarthritis, it seems it might be worth an experiment to take a few more mg of pred for a day or two and see what happens.

I’ve had a wonderful helpful response from my post. Much to think

about and I’m more hopeful. Thank you

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