Five days on the hydrocortisone. Was on the prednisone since May and when cortisol test of last month read 3.1 my rheumatologist sent me to endocrinologist. Endocrinologist has me on 20 mgs hydrocortisone which is equivalent to 5 mgs prednisone. I’m eating very little and gaining a half lb daily and my stomach hurts most of the time. My PMR pain is very bad in morning. I’m using more Tylenol daily. I feel awful and don’t know what to do.
I believe I do better on prednisone but this rheumatologist must feel it’s a problem with low cortisol level. What do I do?????
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Leeleep
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In your shoes I think I’d be on the phone to the rheum PDQ, asking them to confer with the endo to come up with a different plan. No point suffering all the awful side effects as well as pain from the PM. That’s a lose lose situation!
Were you ok on 5 mg pred?
Maybe you just need more time on a solution that works for YOU?
I don’t think you’re the first I have read about on here that had issues with the change from pred to hc. I think there was one chap (think it was a male) who went back to pred as hc was dreadful. Maybe try a search for hc? You might find the thread.
LeeLeep, as I said previously, the Hydrocortisone is EVIL!. I, too, started with the stomach pains you are now experiencing. Didn't get better. When my mind started going, and I knew something dreadful was happening to me, I demanded a return to Pred. Within 3 days of taking 4mg Pred, I was 'my old self'.You don't HAVE to stick with Hydrocortisone. Tell your Endo.
I was switched to hc after finding my cortisol levels were sub optimal. I felt better to start with but found that I was in PMR pain before the 3 pm dose (the dose was split 15mg in the morning and 5mg at 3pm).
I put myself back on to pred. Cortisol levels are still sub optimal after 2 tests. When I asked my Rheumatologist what would happen if they didn’t respond on reduction as recommend by her, she just said well, you’ll get sick!
So, what are you going to do? I think I need to give the HC a chance. I will admit I strayed from my diet which might be part of the stomach issue. This is so complicated. The wonderful moderators here feel Prednisone is ok and not necessary to do the HC.
I doubt very much whether your diet, or any other, is 'part of the stomach issue'. It is a side-effect of the HC. I gave it 3 months, but when I started losing my mind, demanded to be changed back to Pred.However, you might not be affected, adversely, and I sincerely hope you are not.
That was not a helpful reply from your Rheumy. IF you get sick, either the Pred or HC has to be doubled, or you face adrenal crisis. Did your Rheumy not refer you to an Endo, who spells out what to do if you are ill/injured!
I am not tapering. I am 'sticking' on 4mg for awhile.
What do any of you know or possibly tried alternative day dosing of prednisone? Double dose one day and skip a day. Can it get cortisol level up and I heard less moon face?
It will only help get the cortisol level up if your adrenal glands are capable to producing it. When they do the tests and find your adrenal glands can't produce it - it doesn't matter HOW you try taking it, they won't.
It isn't generally a good way to manage PMR. The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person. If you are at the 36 hour end then you might manage fairly well. If you are towards the 12 hour end - you will probably be in pain again before bed on the first day and have all the second day in pain. It is also not appropraite until you get to under 10mg/day.
You asked about alternate day dosing and stimulating the adrenal glands.
I'm trying to explain to you that it doesn't matter whether you take pred or HC nor whether you take the pred every day or on alternate days if your adrenal glands CAN'T make cortisol. Nothing like that will persuade them to work. In fact, if they aren't working and can't work, alternate day dosing could be risky because your body always needs some corticosteroid to function.
And if the antinflammatory effect of pred only lasts 12-24 hours - if you try alternate day dosing, you will have a lot of time in pain.
I only know cortisol is at 3.1. My glands are working if they can still make cortisol. I was dosing down and asked for the test because I saw this happening to people while dosing down at end. I was also told that cortisol comes back up.
Your original post said the endocrinologist had put you on HC - and I doubt he would have done so if your levels were enough. They may be able to make some, but not enough.
As it turned out I never should of been sent to her. She new nothing about our disease . My rheumatologist did one cortisol test per my request and when it came back at 3.1 stated I had to be given hydrocortisone and she does not prescribe it. I’m not going back to either one of them. I thought she handled my case well until this crap came up. The endocrinologist had absolutely no clue. Too much stupid stuff to post here.
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