Useful patient leaflet from European Soc of Endocrinology on adrenal insufficiency

[Polywotsit]

I think the content of this is probably very similar to the Pituitary Foundation leaflet, a link to which was posted recently.

ese-hormones.org/media/ov4h...

I'd be interested to know whether your doctor (GP or rheumatologist) has discussed the phenomenon of adrenal insufficiency with you. It's a major reason why tapering is so important and why patients are urged not to stop taking steroids abruptly.

ESE says that, for most people, the adrenal system kicks back in with production of cortisol once the dosage of corticosteroids goes down enough. For us that's pred. So most of us, statistically speaking, will be OK.

I find it intriguing that the symptoms of gluco-corticoid-induced adrenal insufficiency described in the leaflet are very much like the symptoms of Polymyalgia Rheumatica!

[herdysheep]

Certainly never been discussed with me. It was shock to learn from this forum that it was another hurdle in this steeplechase

[Polywotsit PMRGCAuk team member in reply to herdysheep]

Well herdysheep, hopefully you won't even notice and will sail over the hurdle as if it isn't there, as, according to the experts, most people do! It does though help to explain why doctors have this contradictory attitude towards the steroids - on the one hand they want to get us off as quickly as possible and on the other hand they want us to taper.

[PMRpro Ambassador in reply to Polywotsit]

"according to the experts, most people do!"

What experts? That isn't what I take from that document - the experts are concerned that that is the assumption and it isn't true. But then, after a lifetime in science and medicine I am used to them being very reticent in their statements - bit like the British art of understatement.

A study at Leeds involving PMR patients amongst others, resulted in even the endocrinologists being surprised at how long it takes for adrenal function to return to normal. And the recommendation in this leaflet is for emergency cover to be available for most patients - and I know about 3 on the forum who have a rescue pack.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

Quote from the leaflet: "For most people, gradually tapering off glucocorticoids will result in normalisation of your body’s ability to produce cortisol (see Figure 2)." I'm prepared to give credence to ESE! I welcome the publication of the ESE clinical guideline, because it gives us something to go on from the specialists in hormones, rather than 'just' the rheumatologists. Also, the emergency cover is recommended for patients who have been diagnosed with adrenal insufficiency, as I understand it, because it comes in the section on "what happens if I develop gluco-corticoid-inducedadrenal insufficiency?

I'm also looking at the Berresen et al article from 2020, that found in their study that 11% of patients with PMR alone had adrenal insufficiency, and 30% of patients with GCA. Now, that's a significant proportion, high enough imo for everyone to be educated about the risk, and for clinicians to be looking out for it. However, it's still the case that most of the people in the study didn't.

[PMRpro Ambassador in reply to Polywotsit]

But the devil is in the detail - gradually. And if you had read every reply on the forum as I have you would know that there are quite a few demonstrating frank adrenal insufficiency symptoms who are ordered to keep reducing the dose irrespective of their symptoms. It is clearly stated in the guideline that basal cortisol levels should be monitored - I suggest that regularly but the doctors won't play.

The studies they are looking at are all quite weak evidence - and their recommendations are pretty strong compared to the studies. They also say that. This forum is a self-selecting sample, but the number of people on here with quite clear AI symptoms suggests to me that closer investigation might show the proportion of PMR patients with it may be pretty high amongst any on pred for 4 years or more. We are the exception but the number of longtimers is increasing and we are far more likely to not recover adrenal function.

[Longtimer in reply to PMRpro]

For the first time in years my GP has told me to stay where I am at 5.5mg after 13 years....ACTH last week, result 290, more blood tests end of month....soon also to see an Endocrinologist.....GP saw how ill I was, loss of balance, dizzy, blurred vision, pain, stiffness.....first time she hasn't called steroids poison!.....and so it goes on...

[herdysheep in reply to Polywotsit]

Last time I got down to 4mg I started getting extreme fatigue, dizziness and generally unwell feeling. It was also a very stressful time, so I guess my reserves had run away. Tapering much more slowly now. If I hadn't known about the possibilities I may have reacted differently which may not have been helpful in the long run. Knowing what to look out for is not the same as 'you will get this'. The whole business is like treading on eggshells, and the lack of info from medics does not help, especially when you get a run of 'you must get off steroids straight away' from a gp who does not know you, and almost certainly has not read your notes.

[Polywotsit PMRGCAuk team member in reply to herdysheep]

Yes, you are so right about treading on eggshells!

[Excelsior80]

I wasnt warned about adrenal issues though my GP did recommend I read the information from the pmrgcauk charity for more information about pmr.

[Polywotsit PMRGCAuk team member in reply to Excelsior80]

Thanks!

[Lonsdalelass in reply to Polywotsit]

When I first started steroids I was warned by 2 GPs not to suddenly stop taking them.....but not the reason why, just that I'd be very ill! Why they didn't then explain what 'very ill' meant I'll never know.....probably because I was just the patient and not a medic, but then again I didn't ask either. I was so ill at the time I never thought to question anything.....it was only once I learned so much more from this forum (and your great book, Kate) that knowledge was power and I grew in confidence. Thank goodness for that!

[Indigo2417]

I was diagnosed in Sept 23 by a rheumatologist who prescribed 15mg per day. In the letter he wrote to my GP he suggested if there was a good response, I should reduce to 12.5 after a month, then 10mg for a month and thereafter by 1mg per month. A pharmacist told me I’d probably need to be on them for 18 mths to 2 yrs. No one explained that there might be hiccups in that process. I understood that I shouldn’t stop abruptly. I have learned so much more through reading the information on this forum and from the experts on here than I have from any health care professionals that I’ve dealt with. Mostly, the emphasis is on reducing the steroids as soon as possible. I see a different GP almost every appointment as they are locums, so there is not much chance of the GP getting to know you as a person. Different GPs have slightly differing opinions. Some are more sympathetic to tapering than others. I am careful how I discuss with them what I’ve learned from this forum as I don’t want them to get the impression that I’ve been picking things up from Dr Google and if they don’t know me, they might not appreciate that I do have a modicum of common sense regarding my medication.

[DorsetLady PMRGCAuk volunteer in reply to Indigo2417]

If you say you have obtained your information from the charity’s site rather that ‘off the internet’ most [but not all] are usually more acceptable of that. Everything posted [albeit from patients/ex patients] on here is subject to scrutiny by the moderation team [who are paid employees of the charity] - that cannot be said of all sites.

Should your doctor query that, they can always become a member -free of charge- of the charity.

Note from admin: Important to note that the moderation team are not medically qualified. Always happy for doctors, rheumatologists etc to become professional members.

[Indigo2417 in reply to DorsetLady]

Yes, if I mention anything, I say I’ve got it from the charity. I think the main problem I have is not seeing the same doctor twice. They only see you for a few minutes and you have to put over everything you want to say concisely in a short amount of time. Then you don’t know if they are really listening or have just made their minds up regardless of what you’ve said, because ‘doctor knows best’.

[Angelsmummy in reply to DorsetLady]

Now wouldnt that be a great idea!.,Are you glad to be back in this wonderful weather??😂😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Ecstatic!…😊

[Polywotsit PMRGCAuk team member in reply to Indigo2417]

Thank you! And all the best.

[Zebedee44]

Thankyou for posting this information. It’s so good to have the condition identified and respected.

For me It’s the most unwelcome development of recovery from PMR eight years in. I’m pretty sure I am struggling with adrenal insufficiency. I am exasperated and I feel like a failure for not being able to manage it. Every day is a challenge and many days are lost to sleeping, general weakness and brain fog. I haven’t discussed this with my GP because I know from this forum that the answer is to taper very slowly, but I’m starting to wonder if I should just stick where I am at 3mg. Even 1/4 mg less and I’m struggling

I have had the short synacthen test and confirmed that my adrenal glands would work if I can get lower, so to me it’s even more frustrating that my body and brain are so much controlled by adrenal insufficiency even though the PMR is well controlled.

[PMRpro Ambassador in reply to Zebedee44]

What the leaflet suggests is to remain at the dose you can get to below the physiological dose of 4-6mg and check the basal cortisol every few months to see if it improved. The basal cortisol shows what your adrenals are managing WITHOUT the big chemical kick and will be a good index of what is really happening as well as saving the expense and risks of repeating the synacthen testing which is still only a theoretical piece of info. It doesn't show the day to day machinations of the HPA axis which all has to work together to get the desired result and varies wildly from day to day in the early days/

[Zebedee44 in reply to PMRpro]

Thankyou PMRPro, i will try and get a repeat basal cortisol test done. “Varies wildly from day to day “ is bang on!

[PMRpro Ambassador in reply to Zebedee44]

No hurry - every 3 months is probably soon enough to see a significant difference.

[Chiqui1950]

Thank you!!

[tangocharlie]

I've had adrenal problems several times due to not being advised properly by doctors. Luckily the experts on here recognised what was wrong with me and I followed their advice and sought help. I felt like I'd been hit by the proverbial bus, and at one point really thought I was going to die - which is interesting as 'a feeling of impending doom' is sometimes one of the harbingers of adrenal sufficiency

[RunnerJoe in reply to tangocharlie]

Your comment about the feeling of impending doom is interesting to me. A few nights ago I woke up with the feeling that something was wrong, but I didn't know what. I felt like I was close to panicking, like there wasn't enough oxygen in the room. I assumed it was a small blip with my adrenals, and I went back to sleep after about an hour. I felt fine the next day. I've had a couple of other episodes like you say where I felt like I had been hit by a bus, but they only lasted for a few hours to a day. I'm currently at 8 mg of prednisone and also taking Actemra.

[tangocharlie in reply to RunnerJoe]

It varies in different people, but adrenal problems, if they occur, usually happen around the point you go below 5mg of Pred, though I have heard of people being around 7mg and getting them. What you describe sounds like it might possibly be sleep apnea - I've had that and pre diagnosis would wake suddenly in a kind of panic and gasping for breath. Your body actually wakes you up if you stop breathing so you can't die from sleep apnea but if it isn't controlled in the long term it can cause things like heart problems. if I were you I'd keep a diary to see if you can see any patterns and also mention it to your doctor.