Adrenal insuffiency

Posted , 9 users are following.

Hi all I posted on someone else's thread but decided to start my own discussion .After 3.5 years with PMR I had managed to reduce to 3ml with no flare but then got chronic fatigue .Now after two Sanachten tests 3 months apart I find my adrenals are stunted .They plan to start me on hydrocortisone as its more potent than pred (their words)and taken twice daily mimics the adrenal function .My question is should I see an endocrinologist before starting new regime .

0 likes, 10 replies

10 Replies

  • Posted

    In fact prednisone is several times more potent than hydrocortisone, but this is not necessarily what you need in the case of adrenal insufficiency.  I think what they are saying is hydrocortisone will provide you with a more balanced supply of the substance you need to maintain your health and equilibrium simply because its effect doesn't last so long nor come with the same peak and valley as a dose of pred. 

    If you really were told that hydrocortisone is more potent I would certainly go to a specialist who knows more!

    • Posted

      Thanks Anhaga for that information .I think that is what they probably meant ,will find out tomorrow .
  • Posted

    Some rheumies are used to using HC - I'm surprised they are saying it is more potent. You will need a higher dose in terms of numbers and its effect is much shorter (just a few hours) so it may not manage the PMR as well if it is still active. 

    One lady was switched from pred to HC for the same reason (not stunted adrenal function but non-existent) and experienced horrible side effects with HC that she had never had with pred so her endocrinologist agreed to put her back to pred. All the side effects disappeared. I know a few people with very poor adrenal function who are on pred - because it suits them better and they do very well. If you have some adrenal function I'd have though pred was fine - I'd prefer the single daily dose.

     

    • Posted

      Thanks so much for that info Eileen .I have never had any trouble with the pred so will say that I would prefer to stay on it .How much higher a dose will I need. Iam on 3ml .Also the specialist who is treating me is only a medical specialist who I was under for the pneumonia. Do you think I would do better with an endocrinologist.
    • Posted

      Almost certainly yes, either an endo or a rheumatologist - because your response in the synacthen test is still stunted because you are still on pred and while you need to be aware, if you are functioning OK there is no real reason why you shouldn't regain full function while reducing the pred. As the dose of pred goes down, the amount of cortisol will go up - and many people get off pred just doing that. Part of the equation is whether the PMR is still active. If it is it will be better managed by pred than HC as the length of effect is much shorter so won't last the full 24 hours. Your medical specialist may understand about the return of adrenal function and using HC instead of pred being helpful there but that isn't the only factor for you.

    • Posted

      Thanks Eileen its good to be armed with all this info to help us fight our corner .Hope it works out because up to now compared to others on this forum I had a flare free taper .
    • Posted

      Went to see the Endocrinologist today(turns out she was an endo Eileen )Thankfully she said I could stay on 3mg of Pred unless I got worse .She said wear my medialert bracelet and come see her again after Christmas .She complimented me on my knowledge of the subject and I told her it was thanks to a wonderful bunch of people who support each other .So thanks again Eileen and Anhaga for preparing me for today .
    • Posted

      :-)   Good result - AND she sounds sensible!

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