I am 39 year old female just diagnosed recently with Addisons disease after 8 months of vomiting and feeling terrible. I have been put on 20 mg of hydrocortisone in the am and 10mg at night. However, the 20mg didn't seem to be enough and I increased the dose gaining about 13 pounds in a month and the salt cravings are severe. My endo has now changed my med's to 5mg prednisone in the am and 2.5 at night w/.1mg of floronef. However, I have a couple of concerns 1 of course is weight gain but I'm also concerned about the long term use of Prednisone. Has anyone had any experience with hydrocortisone Vs. Prednisone? and has anyone successfully controlled the weight gain and how?
Justine, Were you actually diagnosed with addisons? I experienced the weight gain because when first diagnosed I was put on the max amount of hydrocortisone. About 40 lbs. My endo should have taken note of the weight gain & at the time I knew nothing about anything to do with addisons. The steriods really increase appetite. Because of fatigue I tried prednisone. I "much" prefer it, but try to stick with HC because it is like what a normal body would produce & does not process through the liver. Some time ago I tapered myself to 20mg HC & have recently added 1mg prednisone in the a.m. because of joint & muscle pain. I have osteoarthritis & perhaps getting plan ole arthritis. It's in my genes!!
Once you are stable it would be good to talk to your endo about a possible slow taper to something nearer 20mg or as Chris said, a switch. Being on too much replacement will have side effects like not being on enough. The hardest part of addisons is realizing that you may not feel like the energetic person you used to be. I have had addisons since 1998 & still cannot fully except this part of it. Now some people with addisons run marathons, climb mountains & ride a bike long distances. It could have something to do with what a person did before addisons & their younger age.
If you can avoid sugar & some carbs like potatoes & bread it may help with the weight loss. I grow my own potatoes so that is out for me!
Think I will check into the methylprednisolone that Chris has mentioned!!
Yes, my cortisol level was a 2-1/2 the day I took the ACHT test when they shot me with adrenaline I dropped to a 2. My skin was very dark still is tan but better than it was.
I'm just very nervous about taking the Prednisone doesn't seem to make sense to take something not manufactured by the body to begin with plus its going thru my liver, which I'm not thrilled about. I may just try it for the 2 months until I go back to the endo and then talk to him and try something else.
Justine, The prednisone won't hurt you for 2 months & probably wouldn't for long term. Many many people take it as their replacement. Thing is we are not taking massive doses...only a "replacement" dose. When on prednisone I tapered my dose to 5mg. 4mg a.m. & 1mg about 5pm. When first diagnosed docs usually prescribe at least the max dose. What they don't mention is that we/or some people can get by on the min dose or somewhere inbetween once stabilized.
I have switched from cortef to prednisone to hydrocortisone...back & forth with no problem. Cortef doesn't work well for me. I like to use prednisone during the summer when I am more active outside. (June, July & August)
Has the doc informed you about taking extra med for illness, injury & etc? Do you have an emergency kit in case of crisis & a braclet noting you have addisons?
Justine, You do need an emergency kit. If you are in a car wreck that really stresses you it could be a real need. If you get the flu with vomiting more than once or twice you should have a shot & go to the hospital for IV fluids. If emergency is called they do not have what you need & by the time you would be transported & they do blood draws at the hospital & all the other stuff you would be very ill. If you are traveling you need a kit with you.
When working I had a kit that went back & forth with me in my purse. Now that I am retired I still carry it with me everywhere & have a kit by the kitchen phone. My local fire dept. knows where they are. If 911 is called for my address they know there is someone here with addisons. I could go on.
Hi Everyone, I have been diagnosed with addisons disease for 14 yrs. I've been on 5 mg prednisone all that time and it has worked well for me. Except last week I was diagnosed with avascular necrosis of my right hip and am going to have to have a hip replacement. The Dr. said it was caused from all the yrs. of taking prednisone. So, even if you are just on a maintenance dose it can wreak havoc with your body. Katsandra