I just had a telephone review with my new GP on another matter - and she asked me where I’m at with pred tapering. I said I’m just getting to 6 for the first time really - and that the rheumatologist I saw in Sept 24 had told me not to go below 5mg until he’d consulted an endocrinologist. I wondered why that would be?
Ah, she said, well as you’ve been on pred for so long (under 4years….) you could well be steroid dependent and they will likely need to put you on another drug called hydrocortisone!!!
Well I know this could happen but surely there’s no evidence for it yet? I haven’t even seen an endocrinologist nor had any sort of cortisol test. And I was just feeling so pleased at my taper…..
I want to be prepared if this is raised again so does anyone have any advice or information on this please?
Thanks in advance x
Written by
Nextoneplease
To view profiles and participate in discussions please or .
No evidence at all - there was a post today from someone who got off pred after 8 years. And as long as you are on enough pred to manage your PMR AND replace adrenal function. there is absolutely NO reason to switch to HC which is hopeless for managing PMR. At the moment, PMR holds all the cards.
The rheumy is obviously very aware of potential problems with normal adrenal function returning as you reduce the pred dose. However, I don't see why he's panicking at this stage - you may well reduce the pred dose without problems and many people do it fine when they do it slowly enough. Why ask an endo at this stage when they can do nothing? 5mg is loads to suppress cortisol production so testing will show nothing of significance - that will come at much lower doses. And there is nothing the endo can do to encourage it - the only stimulus is getting to a lower pred dose and sticking the fatigue out. So the answer at present is just to taper in tiny steps as we bang on about day after day - and see what happens.
But if a rheumatologist says ‘don’t go below 5mg’ it feels risky to ignore him. So i guess I’ll have to recontact nearer the time and double check- but I know there’s nothing for it but to slowly taper. Very annoying to have been unnerved like this!
I think it is good that the rheumy will consult an endocrinologist, and at this stage (working within their knowledge limitations, and getting appropriate advice BEFORE the risk period). I think it is good that the GP has (effectively) given you some advance warning that, perhaps, some further medication may be required. Perhaps a more detailed explanation is required or pointers to more information. Personally, I would be grateful that I was given info that would enable me to explore it further (as you have done).
I take your point Perigrina. However it isn’t yet clear that I will necessarily have a problem with adrenal insufficiency…..I guess what I’m saying is that I prefer not to worry about things that may not happen!
But yes, I guess better advance thought on the part of GP/ rheumy, than no thought at all 😊
You raise a really important point. Our experience/ knowledge, capacity to cope with what and when, personalities and temperaments have a real impact on our approach to health (and lives more generally). I need to KNOW (and am resistant to reassurance!). My partner (partly) thinks I should 'just take the pills'. Best wishes!
I was on prednisone 5 years when I was able to go off after a very slow taper. I felt great when I was on 1 mg of prednisone but thought sure I’m good, I can go off. After three months of pain that was like whack a mole and fatigue I went back on 5 mg which has helped with most of the pain. Now my rheumatologist has asked me too to see an endocrinologist and says I should be able to get off prednisone because PMR doesn’t last 5 years! I mentioned this site and how many here have had PMR for years but she is pretty adamant that’s not what this is. She says PMR doesn’t last 5 years. I’m frustrated because my plan is to stay on 5 mg and do a slow taper to 1 mg and then just stay there.
Oh dear Whitner, you too will need to work on encouraging the doctors to be your partners in managing your health! Your plan sounds good to me and I hope you manage to achieve it 😊
I don’t quite understand the referral to an endocrinologist, do you?
It can last more than five years! Ask many people on here for a start!
And…..even if you did have another issue (eg a type or types of arthritis) surely that wouldn’t necessarily involve an endocrinologist?? As PMRpro says, you’ve already shown you can get off pred without suffering adrenal problems (albeit unfortunately with a lot of pain), so I still don’t understand the endo involvement.
Well she is wrong - tell her to contact Prof Sarah Mackie in Leeds and ask the question.
Your problem was blatantly obviously NOT an endocrinological problem since you got to 1mg and felt fine. It is not uncommon for 1mg to be loads to manage the inflammation when the disease activity is low - but zero is a step too far and over time the unmanaged inflammation builds up like a dripping tap fills a bucket and overflows, resulting in symptoms.
You can almost certainly get back to 1mg very quickly - you did it once and if you head there quickly now you will get there again.
My Rheumy said 12 months ago when i first saw him and when he confirmed PMR and prescribed Prednisolone "you do realise that this is for life?". I started at 20mg and have now tapered to 9mg and will keep tapering to a maintenance dose. I am 83 so "life" doesn't compute to as long as someone much younger. My GP doesn't agree with the maintenance aspect but i hope the natural progression will outpace her/ him (rarely the same one twice) as i have hypothyroidism which has led to heart disease, lung disease etc etc which the Endo denies. After 63 years with Hypo i am certain I know better. Anyway, i have decided that the devil ain't going to get me yet😄😄
I like those sorts of rheumies. Realism from the start. At least we are in a position to prove them wrong now and again - but you know you won't be pressured to get off pred when you aren't ready. And that really is a positive.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Very low cortisol.
Steroid situation update
Rheumy visit recently, going forward…..
Follow up appointment at GP
Simvastatin and pred
