Jan’s Story

Presently, I am a 50 year old female. Until November, 1977 I was perfectly healthy. I am a wife and have two children who were 12 and 14 years old at that time. I was working full time as a physical therapist in a sub-acute rehabilitation center. My job required me to lift clients all day long. I was always involved in sports and was still playing in-door field hockey, softball and riding my bike twelve miles three times a week.
In November, 1977 I developed a bad case of bronchitis. After the bronchitis resolved I developed severe sudden onset asthma. I was treated by an allergist with high doses of prednisone for over a year. By a high dose I mean that I was given 80 mgs and weaned down over a number of weeks. Every time I was weaned down to 5 mgs or taken off of prednisone the asthma symptoms returned.I was then sent to a Pulmonolist and he agreed with the course of treatment. This was about 10 months after being treated by the allergist. The new doctor put me back on prednisone because I was still wheezing. He saw me once again and told me to wean myself off the prednisone. This didn’t seem right to me but I was continuing to see the allergist.

The allergist ran every blood test imaginable. Everything came back normal. I was gaining weight with the steroids; first about 25 pounds and then 60 pounds. I started falling asleep at staff meetings. at work. My strength was lessening at work and I became dizzy and felt like I was going to faint. I began to experience severe exhaustion. My doctor still had no diagnosis for me.

In despair I called my rheumatologist and told him if he didn’t do something I was going to jump out the window. By the end of the day I could hardly walk around at work. He put me back on 15 mg of prednisone for the weekend to see if I felt better. I did respond to this so he said to continue to take the prednisone and see another endocrinologist.

During this time a friend of mine, who was my dad’s cardiologist, called me to come to his house to do physical therapy on him after he had had a hip replacement. He had not seen me in a long time and could not believe my appearance. As soon as he saw the weight gain, the moon face, the buffalo hump and the exhaustion he suggested that I had my doctor run an AM and PM cortisol test. My PM cortisol level came back low. He then suggested I see an endocrinologist.

I first saw a leading endocrinologist in Philadelphia. At first I really thought that he cared and listened. He sent me for a 30 minute ACTH test. It came back normal. He called me the next day and said the test came back normal and “have a nice day; you do not have Addison’s.I made an appointment with the second endocrinologist. I also did some research on my own. I found a book with a person with Cushing’s syndrome in it and said, “This is me!” I took the book with the person with Cushing’s syndrome to the doctor with me. There was a picture of a woman with a moon face, buffalo hump, centripetal obesity, fat rolls between the breasts and pelvis. I was telling my story to a nurse practitioner and asked if the doctor was going to see me. She said later. After the nurse examined me, the doctor stepped in and confirmed that I had Cushing’s syndrome and secondary Addison’s disease. They said the treatment was to go back on the prednisone and gradually wean off. They did not explain anything about the disease or how it could be life threatening. They put me back on 15 mg. of prednisone and wanted me to wean 5 mgs a week. I was out of work at that time. When I went to make my next appointment it was with the nurse practioner. I was livid; they were charging me Doctor’s fees to see the nurse practioner and didn’t even tell me. I insisted on seeing the doctor.

Meanwhile, over the weekend I was following the weaning schedule the nurse practioner had given me and I was in agony. I was exhausted again and had severe leg pain and thought I was loosing my mind. I called my friend the cardiologist who was seeing me every week as a general practioner because we were friends. He said that the weaning schedule was ridiculous and to cut it in half. I was going through severe withdrawal.

I called the nurse practioner on Monday and she yelled at me and said I should have stayed with her weaning schedule and did I not realize that I was like a drug addict. She told me I would have to buck up and deal with the pain. Needless to say that was the end of her. I was in tears. I keep my visit with the doctor and she said I had to go back to work because my blood pressure was fine. I said that I lifted 200 lb. people several times a day and that I was so weak that I could not even lift a gallon of milk. She said too bad.

My friend the cardiologist told me he would keep me out of work. I had made an appointment with my husband’s endocrinologist but the wait for a new patient was 6 months so I was just waiting for the appointment. I really liked him when I met him while he was treating my husband for diabetes.I finally got to see him and as soon as he saw me he said I was a classic secondary Addisonian. He reviewed all my records and sent me for an AM cortisol level. This came back low at 1.2 (normal is 5-20). He again started me on 15 mgs of Prednisone and was going to do a slow wean. He explained that taking all that prednisone for over a year made my adrenal gland go to sleep because I was taking an oral dose of more than what the body makes. His goal was to wean me down. This would make the adrenals work and hopefully get me off steriods. However I was not making enough cover an illness or stress and had to be increased many times for these reasons. Even though I had Addison’s I had the appearance of someone who had Cushing’s. Because of the high amounts of the oral steroids I was on my adrenals were fooled into not working and thus the weight gain and other symptoms. My other medical problems included asthma which now was under good control as I switched allergists, osteoporosis, sleep apnea, paralyzed phrenic nerve which makes my right lung shorter than my left, 8 idiopathic rib fractures and 2 fractures in my left foot. I developed a left foot drop called a steroid myopathy and had to wear an orthotic device for two years. I also developed neuropathies in both my hands due to nerve root inflammation in my neck and avascular necrosis of both my hips from the prednisone which required me to have both hips replaced in 2003.After the hip replacements the endocrinologist put me on Florinef to help me get down off the high doses of IV steroids. Usually secondary Addisonian’s do not need Florinef but it did help me hold my blood pressure while rehabbing my hip and coming down on the prednisone.

In 2003 I developed severe hip pain. I was referred to a pain management doctor and was put on a long acting morphine drug called Kadian, Neurotin and oral Morphine for the break through pain. I suffered for 8 months finally ending up with a walker and was only able to walk 50 feet because of the pain. This is when it was decided to go ahead with the hip replacements. I had the left one done in July and the right one done in October.

All the doctors were concerned because of the stress on the body and the asthma and Addison’s. The left hip replacement went smoothly. There were no complications and I was thrilled; no pain.

The right hip surgery did not go as well. The surgery went well but I developed a steroid induced psychosis. This is very rare as it only occurs in 1% of the people who are on high doses of IV steroids.

I was completely psychotic. I was transferred back to the hospital and my husband suggested to the endocrinologist that I was on too much prednisone. The endocrinologist reviewed my doses and agreed and said there was a condition of steroid induced psychosis and he confirmed the diagnosis. They cut my dose in half. I do not remember that entire week. I was so scared. My family and friends said I was so nasty and cursed everyone. I was also paranoid.

Once 80% of the psychosis resolved, I was transferred back to rehab. This was the most scary time for me as I sort of knew I was rational some of the time and psychotic some of the time. The psychosis returned whenever I was tired. This continued for 6 months.

Exercising is something I loved but with Addison’s it is a double edged sword. During the summer the endocrinologist said that I could swim 250 meters but I had to take 2 extra mgs of Prednisone one hour before. I swam 4 times a week but did not loose any weight.

My endocrinologist was very sensitive to my weight gain because it was not a result of what or how much I was eating. The exercise did not help because it used up my reserves of cortisol. It was a vicious cycle.

2005 started out well for me. My endocrinologist had actually weaned me down to 5.5 mgs of prednisone a day. I still could not loose weight and he was very sympathetic about this. I am 5 feet tall and weighed in at an all time high of 248 lbs. After my January blood test my AM cortisol level was still low at .9 but my blood sugars indicted that I was becoming a diabetic. The endocrinologist asked me if I would try the Aikens diet to see if I could get my sugars down. I have been on it for 6 months and my sugars returned to normal and I lost 48 lbs.

My next blood test revealed my thyroid TSH was 4.2 which meant that my thyroid was shutting down. My endocrinologist started me on Synthroid and said I would have more energy and probably be able to loose more weight. I was doing really well.

However in February of this year my dad was diagnosed with lung cancer. This threw my system into a tizzy. The endocrinologist had to up my prednisone and consequently I gained back some of the weight but still stayed on the diet when I could. For the past three months I was up and down on the prednisone. My dad had a lung re-section a week ago and is doing well. I am trying to get back to my base level of 5.5 mgs of prednisone.

Presently I am down to 7 mgs of prednisone. I am trying to wean myself to .5 mgs every three days or longer depending on how I feel. It seems that once you get under 7 mgs of prednisone the weaning is harder and takes longer. You can read my article on what it feels like to wean on Luci’s site at This Is What It Feels Like To Wean.

I believe in my endocrinologist and the plan is to get me to the lowest possible dose of prednisone or to get me off of it completely. If I can get off of it completely then we have to wait 6 months to see if the adrenal glands will kick in. If I cannot be without the prednisone then I will be on the lowest dose possible. My endocrinologist says I am too young not to be on the lowest dose possible because of the accumulation of the side effects of the prednisone. As you can tell I have had a lot of the side effects.