Update on low Synacthen test

[CoziNess]

I posted a few weeks ago about having what I thought was a low Synacthen test of 180. I now have a doctor's letter which tells me it was 130!! They are referring me to an endocrinologist, and he says they may use hydrocortisone conversion. I've never heard of that. Anyone else had it and did it work? Caroline xx

[PMRpro Ambassador]

What dose of pred are you on for your PMR? Still 3.5mg? That is actually still enough to suppress cortisol and account for the low result.

In adrenal insufficiency due to prd use, they sometimes switch you to hydrocortisone taken 2 or 3 times per day which better mimics the natural production of steroid and encourages the adrenal function as it isn't in the body for as long. Unfortunately it also doesn't manage the inflammation as effectively as pred for those reasons. And therein lies the problem! Endos tend not to consider the rheumatological implications - only see their side of the coin.

[CoziNess in reply to PMRpro]

I'm on Methotrexate, so that may help. I do hope so. I don't want to relapse after all this work. 🥴

[PMRGCA19 in reply to CoziNess]

Endocrinologist spoke to me when I reached 5 mg pred and said he would start me on hydrocortisone if I was prepared for a difficult 12 months. I said I was and it was a very difficult year but I did get off pred after 3.5 years of PMR starting with 30 mg pred. Hope you get off too!

[CoziNess in reply to PMRGCA19]

Thank you so much for sharing your experience. And giving me the idea that I can do this and won't be on Pred for the rest of my life. I'm intrigued as to the difficulties involved in this treatment. Is it quite different from the feelings when tapering off Pred?

[PMRpro Ambassador in reply to PMRGCA19]

If the PMR is still active - HC won't cover it. It is fine as long as endos are aware of that - but they tend to only see their side of the fence.

[tangocharlie in reply to PMRpro]

That's what happened to me. I was switched from Pred to HC in 2017 and was glad at the time to finally be off Pred. But as the PMR was still there it flared up again with a vengeance. We need a way of knowing if PMR is gone or not. I had a stupid rheumie who said it must have gone as it only lasts 2 years ...... He was so wrong, on everything to do with PMR. In the end I managed to get a PET CT scan which showed he PMR was still there and ended up back on steroids. I do hope you fare better! Personally, if I ever get to a low dose of Pred, say 5, I will stick there and not try to get off the Pred again. My adrenal problems all started at 4mg

[CoziNess in reply to tangocharlie]

Mmm, I think my GCA is still active. I'm having tests on my heart a they think it may be affecting it. I feel reluctant now to go on HC😫

[PMRpro Ambassador in reply to CoziNess]

If you are having tests currently - I would insist on changing nothing until it is sorted out.

[CoziNess in reply to PMRpro]

Yes, that's what I was thinking. Thanks for that reassurance. Xxx

[PMRGCA19]

I can't compare to tapering pain as I tapered very slowly (according to DL taper 0.5 mg each time) and therefore didn't suffer much tapering pain. I just remember that at its worst on hydeocortisone I had to come downstairs in the morning sideways one step at a time and holding on to banister rail like grim death. But I got there.

[CoziNess in reply to PMRGCA19]

I don't have much pain as my GCA is more of a problem rather than PMR. But that gives me enough trouble to deal with.I imagine you have just PMR?