I had a cortisol test yesterday and I came back at 4. Rheumatologist is trying to get a consult with endocrinologist for me. She said the endocrinologist would put me on hydrocortisone but she could not do that herself. Rheumatologist said to up my 5 mgs prednisone. Add another 5 mgs tonight. Then the endocrinologist can decide what to do. Is this unusual for the rheumatologist to be sending me to endocrinologist? I would think my rheumatologist should know how to treat using
the hydrocortisone.
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Leeleep
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There are a few people on the forums who just use pred - a couple had side effects with HC but not with pred. HC is felt to be more likely to encourage the return of adrenal function as its effects in the body last less time so the adrenals are stimulated if they are capable of producing cortisol.
It probably depends on the rheumy - some like to switch patients from pred to HC once they are down to about 5mg because of that. Some endocrinologists just scoff but one told one of the charity people they wished all rheumies would check adrenal function routinely. Some rheumies look at you as if you have two heads when you ask for a synacthen test. You can't win.
I was thinking that too. Cortisol levels should be more routine. How dangerous is 4. I hate to go to 10 mgs prednisone as doc said until I see endocrinologist on Monday morning.
5mg is probably enough, 7mg certainly. But you are only going to be on it a few days, you can drop back no problem. If the endocrinologist decides you have adrenal insufficiency causing the low cortisol you are going to be on that sort of dose of some sort of corticosteroid anyway as replacement therapy. You need steroid to function properly - without it in the long term you could become quite ill.
Poor you Leeleep you must feel rotten. I’d welcome an Endocrinologist’s input. To them you will be very interesting rather than a bit of a failing in Rheumatology. Good luck!
What prompted your Rheumy to order the adrenal function test? I was intending to ask my rheumy about that test at our telephone check in last week as I was approaching the end of the 38 day 8-7 taper, but I forgot.
I have been feeling more or less ok with less stamina but with milder waves of fatigue that surprise me on and off during the day rather than the bad weak wobblies in the afternoons that I'd had as higher doses of Pred before moving to PMRpro's taper schedule.
Of course, last night we went to Opera in HD at the movies after a work day for me and today has been rough. PMR is not a disease where testing the limits has a positive outcome. DUH!!!!
Because my GCA was appearing to be gone and thrush was lingering for months, I wanted off prednisone ASAP. I was down to 5 mgs prednisone and having lots of PMR type pain. I figured I was coming off too fast and was concerned about adrenal failure. I asked for cortisol level test.
Leeleep. I have never been to a Rheumatologist. I had, until last year, been under the care of a wonderful Neurologist, who treated, and understood GCA, which I have had for 12 years. My Neuro referred me to an Endo, who organised a Synacthen test for me. In May 2017, I was doing well on 2mg Pred. I had NO fatigue. The results of the test, turned me upside-down. I have Adrenal Insufficiency, and was put onto Hydrocortisone. I almost went crazy, in the true sense of the word! I had ghastly side-effects, and refused to take any more, and requested a return to Pred. I was referred to my GP and put on 4mg Pred.
Of course you may do well on HC, but just bear in mind.
So, how are you doing now? Do you feel good? Is your face normal size? Is your hair normal? I guess you will be on prednisone forever. I’m going to see a holistic doc that uses herbals and vitamins for these type of issues. I will continue a but with my regular docs because I’m in Actemra and want to make sure I come off of it safely. Also will do the hydrocortisone with the endocrinologist , but my GCA is in remission and yes I’m still in pain with PMR but I am going to refine my diet to get better results and give the alternative route a chance. I’m dealing with thrush and need dental work and so I’m more determined to get rid of nasty medications.
I had a reply written out, and it vanished before my eyes! Hoped it went to drafts, but, no, zilch. Anyway, here goes again.
I feel ok on 4mg Pred.Face normal. Hair the best it's ever been.I don't mind if I do have to be on Pred forever. Have been on them 12 years now.I think you must be cautious with herbs etc and Pred.
My Neuro referred me to an Endo for the Synacthen test. The results came via the post, and didn't meet Endo for a few months.My world fell apart when I read that I had Adrenal Insufficiency, what I had to do,what could happen. I had to come off 2mg Pred, asap....wrong... started on Hydrocortisone, which is EVIL!! The side-effects were horrendous! EVENTUALLY, I FELT I WAS GOING CRAZY, LITERALLY! Is 1 of side-effects.I refused to inject myself or learn how, and requested a return to Pred. I felt fine after 3 days. I had NO fatigue before diagnosis, and none since.
With adrenal Insufficiency, I think I am correct in saying that only Pred or HC will help. With any illness, cold, vomiting etc, the dosage has to be increased immediately. I have just read the next post, which says how they are suffering.
Sorry, but this is how it is/can be. Your Endo will talk it through with you.
Started 10 mg hydrocortisone pill other day but my pain in body is very bad. I see doc Monday. Not in adrenal failure. I will post when I have answers.
My cortisol level has been under three for over a year . I only seem to respond to injections at this point. We did find that decadron seemed to work but was so strong that I had trouble with the side effects. In trying to analyze why I do not absorb the prednisone ....the fact that it has to pass through the liver in its processing in the body is a consideration. Decadron also goes through the liver I might add, I hope you find some answer ...please let us know what works. My body has gone into crisis mode twice...so get to the ER if you have nausea and diarrhea ( my symptoms) one shot and I was fine. It is scary.....
I am so sorry to read of your journey with AI. I know there could come a time, when I will need injections, but I do so hope not.I HAVE 2 HC ampoules, next to my phone, so that a paramedic only has to bring a needle and syringe, in an emergency.YES, AM SURE GOING INTO CRISIS MODE MUST BE SCARY.You can PM me
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