November 01, 2004

The day in the life of an addisonian

It's been a while since I've written. My computer has been down. I am at a friend's house and thought I'd better update my diary.

Since the last time I wrote a lot has happened. I have a lot going on. May, June, and July I did not have a period. Aug. 4th I started my period and it has lasted for 3 months. I have been flooding to the point I can't leave the house. In July I saw my GP and requested some androgen gel to increase my poor sex drive. He was uncomfortable with this so he prescribed menest (estrogen). At the same time he prescribed an antidepressant to address my constant sleepiness and my lack of focus and the brain fog as well as the poor motivation and lack of drive. (This is the 3rd antidepressant he has put me on. I don't feel that I am depressed and that's why they are not working. I guess alot of Addisonians have this kind of problem.) 6 weeks go by and the bleeding is bad, the antidepressant is doing nothing. What was causing the bleeding? I looked up when I started the menest and found it was 1 week prior to me starting my period in Aug. The side effects cautioned breakthorough bleeding.

So I stopped taking this as well as the antidepressant. For one it was not doing any good and for another I was going to see a new Endocrinologist Aug. 19th and would be addressing the same issues with him and wanted to give any drugs he RXed a chance. It was also at this time I made an appointment with my GYN to discuss my periods and get a pap smear. Her office made an appointment to have an ultrasound done as well as check my hormone levels. She agreed with me about the Menest causing the bleeding. She told me it was good that I stopped taking it and it may take several months to straighten my periods out. At the same time the new endo addressed the brain fog and lack of motivation and focus an well as the sleepiness by playing with my steroids. I take 40 mg of hydrocortisone for my Addison's a day. He put me on 7 1/2 mg prednisone once a day. This is equivalant to 30 mg hydrocortisone. After 3 weeks I phoned his office and told them that I was not handling my stress very well and my face was breaking out. For 8 years my face was one big raw sore that hurt and never healed up. It wasn't untill I was put on 40 mg hydro that it cleared up and had been for the past 3 years. The change in steroid dosage was to blame.) And I thought that my steroids needed to be increased.

The nurse took the message and said she would get back to me. 2 weeks go by and I have not heard a thing, so I call again and tell them the same thing again and am told the same thing. A week goes by and my face is really bad and I can't deal with any stress I'm a mess. So I call the office and insist that he either increases my prednisone or I wanted to go back to 40 mg hydrocortisone. I was told the doctor was out for the weekend. It has been 3 weeks since my initial steroid change and I was not given a follow-up appointment. None of my calls had been returned. As it turns out instead of putting me on an equivalent dosage of prednisone he put me on 10 mg less than what I was use to. The nurse told me that she had given the doctor my messages and that he would get back to me . I was so upset I told them to put a note in my chart that I was going to go back to 40 mg hydrocortisone (I could not and would not ever have my face in this condition again. It seems that cortisols role is not only to deal with stress it is also responsible for healing. Since I had no cortisol for 8 years my immune system was not allowing my face to heal. Once The 40 mg hydrocortisone was started it allowed my face to heal up and it has not broken out in over 3 years or not untill they played with my steroids. ) So I was pretty put out with my endo's office. I called my Gp and had them give me a RX for hydrocortisone.

2 weeks go by and my endo's office calls and tells me that the doctor wants me to cut my prednisone down to 5 mg. ????????? What about the note in my chart stating I was going back to the Hydrocortisone? Nice documentation on their part. I explained why we made the change in steroids to begin with and was told that I should try Providgil. I told her that my GP had mentioned it before but we hadn't gone that route because it is an amphedamine and I didn't want to do that. She told me she would get back to me. A week and a half go by and she calls and wants to know if I want to try the Providgil or not. I told her yes, so she wants to know what pharmacy to call it in to. So I tell her. I go to pick it up and it's not there. A prior authorization has to be done if OHP (Oregon Health Plan) will cover it. They may not. And I guess it is quite expensive.

Then to add to the mix I am dependant on VIOXX to keep my RA in check and now it has been pulled off the market. OHP didn't cover it ($100 mo), but I was given about a years worth last Christmas (leaving me 3 months worth left) by a drug rep. Celebrex is the next best thing but OHP will not cover it so I am screwed. I can't afford the Celebrex so I'm going to finish taking my VIOXX and then I guess I will just have to cross the pain bridge when I get to it. I don't ever want ot have to deal with the pain and depression that went with having RA.

So that's where I am at this moment. My face is better, I'm handling my stess better and my periods have been OK this past week. (That's due to the birth control pills my GYN put me on 2 weeks ago). So that's whats been going on with me.

Posted by Angie Noah on November 1, 2004 11:42 PM

Posted by: Anonymous at November 6, 2004 08:00 AM