Adrenal Insufficiency Support Group

New here. Weaning off prednisone after 9 months high dosage re chronic sinus infection. Sinus specialist in November 2011 ordered me to reduce 1mg a week. Had stressful January and then sinus surgery beginning of February 2012. Continued weaning down to 6mg a day and hit the wall - shock - end of February. Took myself back up to 10mg a day. Sinus specialist suggested reducing 1mg a month and in seeing endocrinologist but can't see one until end of July. I have successfully got to 8mg a day (6mg prednisone at 9am and 2mg at 2pm). System was handling this all well on 9-10mg but now getting pains in kidney area and lower back especially on left side. Have been stress dosing up to 10mg (7 + 3) when necessary for say 2 days and after second day, kidney area back pain goes. Pain returns when back on 8mg. Am 70 years old and 75kg. After very stressful events this pain is quite uncomfortable but not acute.

Been to local GP and getting a kidney scan. If it is adrenaline based pain then scan won't reveal anything and my doctor will suggest just muscle pain as he has in past. What to do?? Also fear that no matter how gentle the weaning gets, I will not be able to get below 5-6mg a day. So, treating myself as if with secondary Addison's. My local doctor just does not seem to be of any help at all re prednisone weaning. Thirdly, I keep getting prescriptions from him for prednisolone instead of prednisone. Should I worry about this?

Hi Mike

From memory prednisone breaks down via prednisolone and in glucocorticoid terms is about the same potency per mg. (Being picky its maybe 5% less) Prednisone has a certain variation based on digestive efficiency but prednisolone doesn't. I also believe prednisolone has less likelihood of digestive side effects (phew). The upshot IMO is generally you shouldn't worry!

Pain mitigation can also just be (normal) reduction in inflammation. Pred does that marvelously. Its conceivable I guess that the pain is your adrenal glands starting to "work again" as well. (Note I said guess. I have no data to support this.)

You may do a better job weaning on HC, but that really needs endo input. There are a number of ramifications that have to be considered.

If you take 12 months to get down to zero steroids then that's more or less fine. Every month or so though you need a morning cortisol test, not having had any steroids for the past 24 hrs. That cortisol level should gradually rise from one month to the next. If it doesn't you'll have to go on permanent replacement. ie the SAI is permanent.

Cant be more help sorry.

Bob

Thanks for the quick reply. I do hope that the adrenals are starting again. The morning cortisol test though will, I guess, have to be under direction of endo, which will be at end of July. Kidney pain could also have other causes: having scans tomorrow. Next question is about salt intake. If I am suffering adrenal insufficiency, then should I be taking extra salt? This is all so difficult having to work outside my doctor - it's lonely out here and hard to judge symptoms: did the salt drink I had an hour ago make the ache in kidneys lessen, or is it just me imagining?

Hi Mike

Well I don't see why the GP can't arrange to have the same test done twice before you see the endo. You do have to follow a similar prep procedure to avoid errors though, which the local doctor may not understand. We can expand on that here if you want to know more about it. It might also be worth phoning the endos office to ask what lab they use, in case that makes a difference.

The salt? Untreated secondary rarely needs extra salt. Once you start taking a steroid though and suppressing ACTH you can drop in level. You can of course see that in electrolyte tests over time, but its common to see them still in normal range. Its almost best to find out of any of your symptoms are low Na related, like lower BP, orthostatic hypotension, cardiac misfires and nerve pains/weird feelings. The two BP symptoms do of course overlap with low cortisol as well so you have to be careful when interpreting.

Salt ingestion doesn't seem to last that long, for me its about 4-6 hours but everyone will be different.

One of the big indicators for low Na is that you feel dry skinned and mouth, you drink a lot but you urinate most if not all of it out. Feelings of thirst aren't always a useful indicator though. Oh if you get dizzy on standing suddenly that's also a good one

Bob (Australia)