Have been 2 years and 2 months on Pred for GCA. Have had a couple of flares at the very low doses i.e. 3 mgs and then 1.5 mgs using the dead slow reduction method. As I get nearer to zero (please God), I am keen to understand a bit more about the issue of adrenal gland suppression. Am I right in thinking that some unlucky sufferers amongst us, despite careful slow reductions, may never get to zero because they're adrenals are no longer capable of producing their own natural cortisol? If a Synacthen test shows this to be the case, is there nothing can be done to re-stimulate ones own adrenal production, and so mean a lifetime of prednisolone (albeit a low dose perhaps) is the only way to go. This is disappointing.
I have been suffering with extreme stiffness and fatigue for about a year now since the 6 mgs dose, and hopeful it might improve soon?????
I recently bought Kate's book, but am still unsure about this question. I recently requested the Synacthen test, but was told by consultant this wasn't available. It was the same consultant who told me I couldn't possibly be having flares on a O.5 mg reduction, that my esr's didn't bear this out and that he didn't think I had GCA as I was too young at 58.
Thanks, best wishes to everybody.
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Greig1
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Ah well - time for a different consultant I'd say! He was wrong on all counts. You could ask your GP - he can request it too.
However - yes, basically you understand it correctly. It isn't quite the same as "being on pred" in that it is a replacement therapy, just the same as taking thyroxine for poor thyroid function and while pred is sometimes used, more often they use hydrocortisone which is almost identical to cortisol and it is taken twice a day, mimicking the natural production of cortisol much better: bigger dollop in the morning and a small dollop in the afternoon.
However, if you are as low as that without major problems I think it is fair to say your adrenal glands are probably doing fairly well. The best way to stimulate the adrenal production line is to reduce as slowly as possible - the head of medicine at the local hospital says he thinks if you go slowly enough almost everyone will be fine. How long did you stick at 5mg? One top UK PMR consultant likes to keep his patients at 5mg for months before reducing further - and it does seem to work.
You have done very well getting so low in such a short time - I do hope it continues.
Thanks, encouraging info. I since read that staying at 5 mgs for a good while was advised, but I didn't know this when I continued the slow reduction in normal way. Interestingly, now I'm at just 1 mg, I've decided to stay on this for a month, before slowly introducing the 0.5 mg dose. It's getting a bit scary! I'll let you know how I get on.
As you well know, pity medicos don't, that ESR doesn't always rise when you have a flare, and can be affected by many other factors - symptoms are the key - blood markers only a guide.
Your adrenals might just be very lazy, I felt very fatigued at times during my reduction from 6mg down to 3mg - at 0.5mg a time, and even now (hopefully last 0,5mg last week!) still get the odd day.
They, plus other hormones, really get out of sync when you're on Pred, and it can take anything up to a year after coming off Pred completely for your body to get back to normal. So don't give up hope on them yet!
Don't really understand why consultant has refused you a Synacthen test other than under costs reasons, which seems unreasonable, but other than offering to pay for it not sure what you can do - apart from find another doctor! As for you not having GCA, then the age reason holds no water, and you must have had symptoms initially that to be diagnosed.
As you say some people's glands aren't capable of working, but a small dose of Pred will not cause you much problem, and to be honest they're aren't many people who get to late 50s who aren't on some tablet or other!
Sorry can't be more helpful, sure others with more experience- good or bad - will respond.
Thanks Dorset Lady, if I do manage to get to zero, and a year later I still have the stiffness, I will be asserting myself for the Synacthen test. Good luck and hope your last 0.5 recently will indeed be your last.
Hmmmm- something of a plonker, I would say. I'm one of those who have secondary adrenal insufficiency and I am currently on 7.5mg Pred. Bear in mind though, that I have been taking Pred for 15+ years and not only for PMR.
He must be well behind in his reading as I was diagnosed at age 57 and had a very gradual onset which threw several spanners in the works as I had no high inflammatory markers; they have remained stubbornly at 4 and 2 respectively (I put it like that because I can no longer remember which was which).
Anyway, does any of this bother me? No, I only recall these facts when answering posts such as yours.
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