Hello everyone. I am new to this, so please bear with me.
A little history:
I was diagnosed with Addison's Disease in 1997 after several episodes of illnesses w/unexplained vomiting and dehydration. The initial diagnosis was iffy because although I did not produce cortisone (they ran all of the tests twice), I did not match all of the symptoms of Addison's. For example, I gained weight instead of losing weight, I didn't have the brown skin color in the creases of my skin, etc. My blood pressure has always been very low, I'm always cold, I constantly crave salt, I never have any energy, & I get sick very easily. I can catch the same cold as a "normal" person, however, I will always get it twice as bad and keep it for twice as long. Anyway, the way I understand it now is even if I was mis-diagnosed then, I would have Addison's now because I've been on the steroids for so long.
I went to 2 different endocronologists and they pretty much got me on the medications and then they were done with me. They told me that my family doctor could just refill my prescriptions for me. (they didn't need to see me).
I have been having some serious dental problems lately and I am concerned that being on the steroids for so long is causing this. My teeth are literally just breaking. I have already had to get 3 crowns within the past 6 months and I just had another tooth break yesterday. I wasn't even eating anything and the whole front of the tooth just broke off. I am very faithful about brushing and flossing, so needless to say this is VERY frustrating (& expensive!) Has anyone else had this problem? I am on Prednisone 5 mg. once a day and Florinef 0.1 mg once a day.
I never knew that a forum like this existed for people with Addison's, so I would appreciate hearing from anyone. Thank you so much. Crystal
Ah prednisone. While your 5mg is about 25mg of hydrocortosone, it is a long acting steroid and tends to have more side effects than HC because it does not give the body a break and give it the down time that the body normally has. A normal body has its highest cortisol reading in the morning, half that in the late afternoon and near zero at midnight - the pred will keep you pretty even all the time. Ticket to bone necrosis and other issues such as you are experiencing but you can get nice once a day dosing...
Sad that your docs had that attitude. You need to get to a good endo - and that may take some doing. Yes, your adrenals have been completely suppressed for a long long time and may not come back. But you do need following as well, things to change over time and that dose was obviously too high for your body. And you need to see probably with a dexa scan what other damage has been done and get working at repair. You may have a touch of Cushing's from the drugs. A 24 hour urine test on meds will give an indication of too much or too little. Sad.
Thank you so much for your reply. I truly appreciate it.
Can you tell me exactly what a dexascan is? Is that something a good endocronologist would order? I have never had any testing like that done. (they never even did any type of x-rays on my adrenal glands).
I have gained about 30 pounds since I was diagnosed 11 years ago. I was always healthy and in great shape. I was a cheerleader and did gymnastics all through high school. Now I have to take a LONG nap every single day just to function. It is so depressing to me. I thought this was just the way it was for people with Addison's. I never knew that my medicine could cause me to get worse.
I went to 2 different endocronologists and they pretty much got me on the medications and then they were done with me. They told me that my family doctor could just refill my prescriptions for me. (they didn't need to see me).
I just can't believe that your endos just brushed you off like that! Mine, I go & see them every 3 months! They are wonderful to me, very helpful. Answer any questions that I have. I just love them!!!
I have also wondered about my teeth & addisons. My teeth where beautiful before all the meds & now, they look like crap! I wonder if it's the meds or all the salt i eat straight! Not sure...
Thanks for your reply. I believe that it definitely has to be the medications. I eat a lot of salt, but it is mostly through the form of potato chips, pretzels, etc. It is really starting to scare me though. I just wonder what other kind of damage is going on inside me body (where I can't see it).
I forgot to mention in my 1st posting something else that I thought was a little unusual ... when I went to the 2nd endo, he had me give myself shots of depo-testosterone. Has anyone else ever done that? I just recently learned that DHEA can help some people, but they never mentioned that to me. I did the shots for a short time and then I just quit doing them. I was scared that I was going to start looking like a man.
Concerned about long term steroid usage 
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