Nudging Adrenals back to life

[Mike364]

I have been taking steroids for at least 12 years for PMR and am currently on 8 mg prednisolone. If I go below this pain is bad. My endocrinologist says adrenal glands will not come back to life after this time and I will be on pre for the rest of my life. Can this be true?

[DorsetLady PMRGCAuk volunteer]

He may be correct, but not sure he can categorically say that if you haven’t got below 8mg -they probably haven’t been put to the test …

When you try to drop below 8mg how are doing it? Using a slower taper as links and only trying 0.5mg a time? … and are you sure pains are definitely PMR, sometimes can be other things…

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

The slower plans may also help the adrenals to stir…..

[Mike364 in reply to DorsetLady]

I got to 7.5 by slow method. But I just hurt so much I went back to 8. I can live with 8 so why reduce?

[DorsetLady PMRGCAuk volunteer in reply to Mike364]

Think most doctors would prefer you to be slightly lower -say 5mg -but it your choice of course. Also depends on age as well -if you’re in 80s it probably matters less than in your 60s.

If you remain at 8mg it’s unlikely that your adrenals will decide they need to work! See this (if you haven’t already) -

healthunlocked.com/pmrgcauk...

[Mike364 in reply to DorsetLady]

Thank you for that - yes I have seen that. I am 74 and also have chronic lower back pain and bronchiectasis. It seems the best thing at the moment is not to aggravate anything more than I have to. I have real trouble walking and standing although I have a stool for washing up! I use an exercise bike every day and electric bike in the summer. But sometime it gets a bit much altogether. Mindfulness does help with the pain. Thanks for your thoughts though on pred.

[SnazzyD]

How can he say? It does annoy me when pronouncements are made before the patient has even tried. Statistically speaking perhaps it’s not so easy but that’s stats for you; winners and losers. You don’t know which you are. If a doctor told me that I’d want to try on a very very slow taper as in a few months per 0.5mg as there is nothing to lose on the adrenal front. I struggled with mine and general muscular aches were a feature. Worse pain came from my muscles being so easily hurt by strain especially after repetitive movements or sudden hefting . I had GCR only and sometimes thought I was getting PMR but the pattern was always the same. It’s hard working out what is what but it worth checking in on yourself to see if there is any pattern to your pain and if possibly you are reducing too fast for the time you’ve been on Pred. 18 months since stopping Pred I’m pathetic compared to pre diagnosis such is the muscle damage. I don’t think Covid helped at all.

[Karenjaninaz in reply to SnazzyD]

Snazzy, I sent you a message.

[PMRpro Ambassador]

He can't say though it becomes less likely the longer you are on pred. I know of a couple of people who had been on pred for similar times who DID get off pred and their adrenal function returned. However - at present 8mg is still plenty to suppress function and it sounds as if it is still the PMR that is ruling the roost.

You sound like me - 18 years of PMR, 13+ years of pred, but I was stuck in the teens of pred dose. I did get down to 7mg recently by being put on Actemra (I'm not in the UK) and at 7mg I could function, 6mg I was exhausted. But I have had a problem with atrial fibrillation after the bivalent Covid booster - and 10mg pred sorts THAT out for now.

[SheffieldJane]

My Endocrinologist says that I will feel pretty awful reducing and I will need to ride this out. I am wobbling at 5 mgs and being kept awake with pain ( PMR type). I have been on Pred for 7 years I developed GCA after 4 years of Pred for PMR. I am trying it in the absence of anything else but I am feeling increasingly awful, however, I wanted to try being completely stuck.. Can it really be inevitable that we suffer like this with steroid dependence ? I haven’t involved my Rheumatologist in this advice, she favours additional medication that I would like to avoid ( Methotrexate etc).

I reduced to 3 mgs with PMR alone previously, without this reaction.

[PMRpro Ambassador in reply to SheffieldJane]

If you are suffering with PMR symptoms that is a totally different problem from the adrenal function or lack of it. You have to get the balance for both and the PMR is the more important - go too low and you will be back where you started. If the PMR allows you can get low enough to stimulate adrenal function and need to cope with the problems there. But only if ...

[SheffieldJane in reply to PMRpro]

I have offered this advice myself, to others, over the years. The Endo’s priorities are different. I have hit a wall I think. The pain is all over, non specific. Why would he say “ “ride out the pain”? My Rheumatologist gives me my head in decisions about tapering. My GI symptoms are constant. I am truly fed up. I could imagine recovering when I was in Australia.Now I dread another winter. Sorry, I’ll rally, I always do. X

[PMRpro Ambassador in reply to SheffieldJane]

Because the endo is only thinking of endocrinology needs when reducing the dose. Steroid withdrawal also causes aches and pains and the way to deal with them is to stick it out and "ride out the pain". However, if the steroid dose you have reduced to is now too low to manage the PMR inflammation - you are subject to the same tapering problems as ever as the inflammation builds up again. But the endo isn't seeing that ...

If I had the chance to move to OZ, I would! I just look at the UK weather map and say NOOOOOOOOOOOOOOOOO! It is cold here - but not a lot of rain or wind.

[SheffieldJane in reply to PMRpro]

You are right. It is another version of our autoimmune diseases not being taken seriously and consultants working in their own silos.

Not only the weather either!

[Janstr in reply to SheffieldJane]

Have you thought about getting an ESR or CRP test which, if raised, may indicate that you’re flaring

[SheffieldJane in reply to Janstr]

I do get them on a fairly regular basis but I am aware that my inflammation levels will be suppressed by Pred. and won’t give a true indicator. However they were raised recently and my Rheumatologist thought if was because I had stopped Tocilizumab.

[Janstr in reply to SheffieldJane]

it could also be because your inflammation level is going up & you’re heading towards a flare. I can have the CRP test whenever I want, & the first time I flared I could see it rising week by week & then got the first pain I initially had with PMR again.I don’t know anything about Tocilizumab, but if stopping it causes your CRP to rise, doesn’t that mean your inflammation levels are rising, & that your pain may be PMR?

[SheffieldJane in reply to Janstr]

Yes possibly. I could well be. I have certainly been feeling pretty awful. I even wondered if it was another bout of Coved 19.

[Janstr in reply to Janstr]

It’s lovely for me to be able to suggest things to you, as you were the first person to help me several years go, when someone gave me a link to this site a few months after PMR/GCA diagnosis. I was on a high dose of pred, & feeling very alone with it, & you really helped. So a big thanks.

[PMRpro Ambassador in reply to Janstr]

CRP would also rise for a chest infection - and actually, being low when on TCZ doesn't mean the disease isn't active because of the way TCZ works.