referral - why?

[AnniesRyder5]

My rheumatologist referred me to an endocrinologist because like many others I was struggling a bit reducing. I was on 4mg of pred.

Apparently my synacthen test showed a normal basal level and a post of 432 - suboptimal but near normal.

However the endocrinologist said he was “unsure whether it would be safe to convert to hydrocortisone “!

The rheumatologist replied to “switch to hydrocortisone 10,5,5 mg tds”!

I’ve no idea what that means but my query is why did the rheumatologist refer me in the first place!

And to complicate things even more I’m scheduled for a total reverse shoulder replacement next Monday (19th). It’s a big operation to be followed with intense physio.

The shoulder surgeon considered my taking 4mg of pred would assist pain control

So here I am ! Even more anxious about my operation and I’ve no idea how to proceed or who to ask for advice!😡

[SnazzyD]

My rheumatologists at the time didn’t really understand the endocrine side either, beyond there being a potential problem with regaining adrenal function. My 4mg Synacthen test said about the same, no gold star more of a good effort badge. My Endo just said to keep reducing because 4mg was still enough to keep the glands a bit dozy. They wanted 1mg per month to which I offered a no thank you, but that I would be prepared to do 0.5mg over whatever time felt ok. No mention of hydrocortisone even though I was feeling pretty feeble, so it isn’t black and white and there is room for differing opinions. Yes, it can be a real struggle with energy and feeling feeble but that’s often par for the course and not necessarily a sign of things going wrong. It’s a matter of degree.

My concern is that Pred could still be doing a necessary job of keeping the PMR down and hydrocortisone may not be potent enough for that job. As we often see on here is that some rheumies think that once you are down under 5mg the autoimmune side of things is gone so the Endo’s can do their bit. So with your’s statement “tds” means three times a day with the dose at 10mg then 5mg and then 5mg Hydrocortisone. The question is, have you felt your autoimmune side to be well and truly quiet for the last couple of reductions?

As for 4mg being a painkiller for surgical pain, I had to laugh. It have come across the opinion a few times that somehow Pred bestows upon us a super human ability to go further, faster and be able to ignore pain. I was at a party once and a biochemist asked what it feels like to be enhanced by Pred. I nearly gave him my mince pie square in his mulled wine. When that time comes your anaesthetist will be the one dealing with that analgesia. If they happen to think the same as your Rheumy, which I doubt, ask for options on the day that can be readily given by nurses without having to ring round busy doctors to come to the ward to prescribe them.

[Gimme in reply to SnazzyD]

A biochemist should know the difference between anabolic steroids and a glucocorticosteroid. What a stupid person. For a split second, I was wondering where you were going to shove the mince pie. lol

[AnniesRyder5 in reply to SnazzyD]

The truth is I’ve been on 4mg for a while and feel ok - just the lethargy bit - so I can’t really say if I’m ok or not!

Upto a couple of months ago when I was trying to reduce I did struggle.

I suppose I’ll get an idea when I move to hydrocortisone

Did you get off pred yet?

I do find it amazing that 2 consultants can have such bizarre opinions!

[SnazzyD in reply to AnniesRyder5]

I came off Pred in August 2020. From 4mg I reduced 0.5mg over anything from 8-14 weeks depending on how I felt. You only know if your adrenal axis is working if you are challenged and you feel ok. At the beginning all it takes to make you feel exhausted is doing some household chores for example. Then it’s ok to go out to the shops and onwards. Knowing if you can cope with extreme shock or stress is by undergoing some event. I found the whole thing unpredictable to be honest. We are all different and it’s a case of working out what is best for you.

[PMRpro Ambassador]

The synacthen test only shows that if the adrenal glands are kicked hard with a chemical dose equivalent to naturally produced ACTH, they are capable of preducing cortisol. That isn't the same as your pituitary producing enough ACTH reliably and sending it over to the adrenal glands to make them produce cortisol.

The main problem as I see it is actually whether the PMR is still there - 4mg is loads to manage low activity disease. HC isn't anything like as good in terms of its antiinflammatory effect even at the same dose.

And as for pred as a pain killer - oh ha ... I echo SnazzyD there.

Speak to the anaesthetist about intraoperative cover for blunted adrenal function whatever the result said - they are fairly risk-averse, they are the ones who have to pick up the pieces and it doesn't look good on their record ...

[Gimme in reply to PMRpro]

That was my thought. The anaesthetist trumps that lot. His/her job is to keep you alive.

[PMRpro Ambassador in reply to Gimme]

... despite the best attempts of others ...

[sampete]

I had a reverse shoulder operation at Christmas and it wasn't as bad as I had been led to believe. First few days were a bit uncomfortable but to be honest I was quite pleased. The worst part is having to wear a sling for 4 weeks and getting dressed and undressed but it becomes easier as you learn. Look on you tube how to get dressed. Physio also is quite simple go every couple of weeks where they give you different exercises but wouldn't say it was intense. I am now 8 weeks post op and can do most things within reason. I had a brilliant surgeon and I suppose how you recover depends on the kind of patient you are I have always had quite a high pain threshold. Anyway good luck with your op and speedy recovery.

[AnniesRyder5 in reply to sampete]

Thank you and did you take your usual pred amount?

[sampete in reply to AnniesRyder5]

Yes but was only on 2.5mg and took it night before but I think the anesthetist tops you up.