Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
5mg Pred + 30 mg Hydro = 50 mg hydrocortisone. That's an insanely high amount for a normal morning dose. Please call your Dr and tell him what you are doing. I think it can be dangerous to take that much long term because it raises your blood pressure and ocular pressure too much (inside your eyeballs).
Lynn
I take 10-5-5mg of HC per day and that is plenty to keep my body functioning well.
Please recheck your high levels with your doctor or get a new one!!!
I am sorry to hear about the difficulty of finding the proper dose of steroids in order for you to feel good. I was diagnosed with AD in July, and at that time I was told it could take up to 9 months to a year in order to stabilize the amount of steroids so that you can live a somewhat normal life. The only time that I was put on prenisone was when I has severe pneumonia that landed me in the ICU for a week. The effect of the steroid may have saved my life, but left me 30 pounds heavier! NOW, what I am about to tell you and anyone who is reading this....After I recovered from the pneumonia, I discovered that I had a fractured pelvis. I hadn't fell or anything that would cause a fracture, but the fracture just happened (talk about painful). With time it healed. Two days ago, I was planting flowers and when I stood up I heard a "crack" dog gone it. The pain was unbearable. Rushed up to the ER, and as I was waiting, I started to go into a crisis. My husband told the receptionist that I need to get in immediately. Sure enough, I fractured my pelvis AGAIN, however it was another part of the pelvis than before. The doctor FINALLY explained why this is happening to me. With long term steroids, and especially the prenisone, it makes your bones so brittle that you can fracture bones in your body without doing anything, great huh? Sooooo, I suggest that you talk to your Endro and discuss this side effect, along with all the other effects that you have been told about. This disease as the ER doctor told my husband and I is a very serious condition of not treated correctly. I should have given myself an emergency injection right away, and I didn't, and sure enough, I went into a crisis.
Good luck Sunshine!
I've just had trouble lately ( a few times in the past) with not keeping my adrenal at an even keel.
I was told the Prednisone is a low dose but maybe I am adding too much hydrocortisone, I'll have to check with him. It does keep me steady. I am familiar with the emergency kit and my husband gives me shots as needed but I would have to have them weekly the way I'm going.
It's a little scary to be so unsteady for so long.
Thank you all for your impute!!!
He has a high stress/high focus job and finds that the harder he works (even sitting down), the more he needs. He has only had Addison's since beginning of October last year (adrenal infarction), so we are hoping it will improve over time and he will be able to reduce to the 10-5-5.
As others have stated higher amounts of steroid use is typically used in crisis and the higher you go the higher your chances are for horrible side effects. It's best to get educated so you can have better control over your medication. As my Endo has said time and time again, it is impossible for a doctor to measure just how much replacement steroid is needed. The technology is there but there hasn't been a device created. It is up to the patient (US) to go off of how we are feeling, figure out if it's an electrolyte imbalance or if we indeed need more steroid. Most cases it's simply an electrolyte imbalance, in which a simple increase in salt will do the trick. While other times, if we are sick or have an ongoing stressful disease we will need higher doses of steroids to maintain, much like how our body would respond.
So while it's easy to say, oh you shouldn't be on that much because of X,Y,Z. None of us truly know what the other is going through. Each situation is different :)
Personally, I tend to get by on 25-30mg of HC daily, although lately I've had to go up to 40-50mg, which is why we are working on trying to figure out what caused the change, hence why I'm on Prednisone.
Good luck and I hope each of us are able to get resolutions to our problems soon!
- Kristen