From may 2017 I was diagnosed with PRM. Sudden onset , pain initially in hips, followed by shoulders/ neck.
As we all know: prednisolone was my miracle drug too! For the first 5 years or so I, mainly, managed along on a low dose, mainly under 5 mg. Gradually the unwanted side effects kicked in: hypertension, osteo-poroses, and increasing pain/ dysfunction/ tiredness plus plus.
We moved from New Zealand to Netherlands and I decided that I needed some specialist help.
I went to the local hospital rheumatology unit and was advised by my oncologist to "get a second opinion". ("that is very common in the Netherlands" he assured me!)
And yes, how correct he was, what a difference!
I saw the rheuma specialist, tests were done, and her verdict was: you probably had PMR at the onset, but now : adrenal insufficiency.
WHAT!! I still don t know whether I can/should believe her, but..she is the expert and I feel so lucky to have her, so I follow her advise. Of course. No more prednisolone. It has been my constant companion for 7 years.
Hydrocortisone, initially high dose, gradually diminishing. We give it our best shot.
Of course I want to know whether any of you good people have, or have had experience with this drug and what I can/ might expect, and of course what I can do to make this work as good as it can.
Thanks for your responses.
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Kaaswinkel72
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Because it has a shorter life in the body than pred, it must be dosed 2 or 3 times a day, the levels in the blood falling low before each next dose. That is thought to be more likely to encourage the return of pituitary function to stimulate the adrenal glands to produce cortisol again. Which is what you are hoping for.
It doesn't manage inflammation as well - so if the PMR is still there, it may well emerge again. What tests did she do to come to the conclusion that it is adrenal insufficiency and that the PMR is gone? If the pred was still about 5mg it is not only plenty to suppress cortisol production but also to manage PMR.
HC is also a corticosteroid, it can have similar adverse effects to pred, although adrenal suppression should be less. It depends on the person - some people who have done fairly well on pred but are switched in the hope of restarting adrenal function find they don't like the HC for various reasons and ask to go back. Others take HC and are fine. Only time will tell whether adrenal function will return - and it can still take a fair amount of time.
Do i understand you correct: does hc. Also “give” us high blood pressure, thin bonen as pred. Does. ?. I f that s the case I wonder why I bother…. Maybe in the hope that it might restart the adrenal glands. We shall see my Friends
The severe side effects are less common with HC, but they are still possible, And some people find they have some effects they didn't have with pred. You just have to try it and see,
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