Meds for addisons

Hi…I have developed adrenal insufficiency because of taking prednisone for many years due to a kidney transplant…my kidney doc is treating this…but I still have symptoms of dizzyness and feeling off balance…this can come on suddenly, while doing something…it is annoying, especially when out with friends…it happens often…I have to sit down, …can’t do alot of things just spontaneously without worrying about being dizzy or off balance when walking…I am 56 years old and single, and don’t want to have to live like an old woman…having to rest all the time…I would love some feedback about meds others are on…the dosage, etc…and what diet , or foods can help the avoidance of these symptoms…I am on 10 mg of prednisone which I divide twice a day…and on .02 flurinef…I divide that as well…Would love some feedback…Thanks, Linda

Hi Linda, I don’t know if this will help you but I take .01gm of florinef and 25mg of Cortisone Acetate. My Doctor told me the dizziness comes from your Florinef. Not enough or maybe to much??? I don’t know. I do well with my meds and don’t ever have much problems. Sorry I couldn’t tell you more. Tammy
----- Original Message -----
Sent: Tuesday, July 10, 2007 2:10 PM
Subject: [addisons] meds for addisons

I have found if I take a chicken boullion cube and make a broth and drink it when I take my florinef it does seem to help also the pharmacy usually has “salt tablets” you can purchase over the counter. As AI patients we are “salt wasters” and extra sodium intake is needed. I keep myself hydrated too by drinking more water than I did prior to my AI diagnoses.

I stay away from foods high in potassium and gravitate more toward fresh foods, lots of protien (I use egg whites) and I am liberal with the sea salt on everything.

If your doc can check your blood pressure for you lying down and standing up to see if there is a change which might indicate a problem with your sodium/potassium ratio. He can run an electrolyte panel on you also to see if your sodium/potassium are within acceptable limints. It may be that you need more florinef-I always do in the summer months. Try some dietary changes (more protein, salt, liquid) first and see if it helps.

I have also started taking dhea, a supplement most docs in the UK seem to give to AI patients but not so much in the US. I complained to my dr about fatigue and he ran iron/b12/vitamin d tests and my vitamin D came back very low. He explained to me (with too many technical terms for my brain) that long term steroid use can really lower the bodies ability to manufacture vit d from sunlight.

The vit d has helped my fatigue, the increasing salt intake and doubling my florinef for the winter has really helped my dizzy spells. I am no longer the queen of “oh look what is that there on the floor” which was my way of excusing bending over to let the bp regulate a bit when I got dizzy.

Onto your question about dosage…the breakdown of prednisone is close to this: 5mg of prednisone equals 20mg of hydrocortisone. Many AI patients are on hydrocortisone because they feel there are less side effects with it-the downfall being we have to take it more often. I say that so my dosage makes sense.
I take 20mg of hydrocortisone a day (this would be 5mg in prednisone) and I dose it by taking 10mg twice a day. I take .1 florinef for the sumer (goes to .05 for the winter) and take my chicken boullion broth with it. I think I go thru 1-3 cubes of boullion a day in the summer and it helps with any dizzy spells. When I get dizzy I think uh oh…need salt.

Have you had these dizzy spells all along on the pred? If it is sudden onset it might be the warmer months or your body is fighting something. I do find when I am coming down with a cold or other illness I get a bit lightheaded and salt doesnt seem to cut it. I have to add a bit more of my hydrocortisone for the duration of the cold.