And It's About Time There Was Some Support For Cushing's!
My name is Valerie and I am 47. When I was 41, I started getting sick, insomnia, increased appetite, weight gain in the midriff, moonface, buffalo hump, severe weakness to extremities and severe fatigue and depression.
I was working as a Registered Nurse in the ICU and just was deteriorating. Had been worked up by my Primary Care MD who sent me to 6 other doctor's who all gave me the diagnosis of mononucleosis and fibromyalgia.
Then I developed heart palpitations with a heart murmur and high blood pressure. I collapsed at work one night and was put on disability in January of 2000. My 9 y.o. son's pediatrician who diagnosed him with his rare disease at 6 months of age, knew me well and said, "I don't buy what these doctor's are telling you, get to UCSF and see this specialist".
So I fought my HMO for 3 months and finally went over their heads to UCSF without a referral and saw Dr. Kenneth Fye, a rheumatologist/immunologist who was 99% certain I had hypercortisolism within 20 min. of talking to me and examining me. He ordered the necessary labwork of a 24 UFC and serum cortisols and called me 2 days later to tell me I had Cushing's disease with a pituitary tumor. I had my 7mm tumor and 1/3rd of my anterior pituitary gland removed in Sept. 2000. The surgeon said my tumor was wrapping around my optic nerve and 3 months later would have been inoperable. I developed numerous complications after the surgery, diabetes insipidus, spinal headache, depression and severe peripheral mouth pain to my upper lip where the 75 y.o. surgeon, Dr. Charles Wilson, used the old transphenoidal approach. I didn't start weaning off the 40 mg. of Cortef put on post operatively until I was 7 months post op due to my mouth pain and depression and the endo wanted me under psychiatric care. I saw a psychiatrist whom I am still seeing today, almost 5 years post op. She had tried every anti-depressant there was and I had side effects to all of them. I went 2-1/2 years post op and weaned down to 12.5mg of cortef and never plateaued and had a hard time all the way. I finally went to another endo at UCSF who switched me to 7mg of prednisone after 2-1/2 years of trying to wean because I was going through a marital separation and under severe stress. He said my body needed the longer acting drug. Before he switched me, my ACTH stimulation test showed that I was able to wean off the steroids, my post cortisol was 20. I continued to decline and then was re-tested by my original endo, Dr. Tyrrell, for re-occurrence. No re-occurence. I saw 2 more endos that just kept telling me to wean and I couldn't. I managed to wean down to 5.5mg. of prednisone but was not well. I finally listened to the patients on this Cushing's board telling me to go see Dr. Ted F. in LA, since he was good at helping Cushing's patients that were not recovering and with hormonal problems that I knew I had. I was becoming hypopituitarism.
In Sept. 2003, I saw Dr. Ted F. and he put me on a plan to wean and gave me hope. He tried switching me back to hydrocortisone from the prednisone but I had an adrenal crisis. That was actually my 3rd adrenal crisis in one year. So he put me back on the prednisone with florinef and all replacement adrenal hormones because my adrenals were not functioning. The high levels of prednisone completely suppressed them. I was also becoming partially hypopituitary. All the other 6 endos said I was not hypopituitary because I was getting normal periods. They didn't know my adrenals weren't working either, because they never tested them.
I was on Dr. F.'s plan now for 8 months and had weaned down to 3.75mg of prednisone. When I went to see him I was at 5.5mg of prednisone. I did have 2 more adrenal crisis', so a total of 5 in the last year and a half. I am very sensitive to meds and now know I need to be careful with any changes I make. Two of the crisis' were from being ill and unable to keep my prednisone down.
I am still under his care and as of May 17, 2004, I was told that my HPA axis was recovered and my adrenals were now functioning to where I could wean off the prednisone. I am currently doing it slowly to avoid any further crisis', 1/4-1/2mg. He thinks it will get easier when I get to 3mg.
I have 2 lovely children, ages 10-1/2 and 13 and have separated for the second and last time from my unsupportive husband in Nov. 2004. I went back up to 3.75mg. of prednisone and was unable to wean. It has been a rough road and I am still disabled. I am now determined to wean off this prednisone and go on with my life. The weaning is difficult and painful. I do yoga 2 days a week and the weight of 60 lbs. I gained is gone. My mouth pain is still present and was having acupuncture weekly for it which is helping me to learn to deal with it better. I use alternative therapies and drugs to help me through these tough times and the strength of my family and friends who do understand. There are only a few that truly understand left but that is okay. I am grateful to be alive and just hope that I can get off this prednisone and get back to my old self, whoever that is. I want to live and watch my children grow up. I also see a healer twice a month. I started the process of weaning again in May of 2005 and now am down to 3.50mg. of prednisone and I am weaning slowly at increments of 1/4mg. every 4-6 weeks. It's a long and slow process but now that I am legally separated and closer to a divorce, I know I will be able to wean. I anticipate the weaning will take another 1-2 years but I hope to go faster as I get down around 3 mg.
I continue to email Dr. F. and my PCP at Kaiser allows me to manage my healthcare. I am very prepared for adrenal crisis, I haven't had any since leaving my husband. I now am a protocol patient for Dr. F.'s other patients in that I composed the protocol in what to do when you have an adrenal crisis with the injectable cortisol although I haven't had to inject myself in over two years. I just up the prednisone, use Zofran 8mg. dissolving tablets and take it easy. It has been a very long road and even though I'll be 5 years post op in Sept., I believe I'll get off the prednisone and have some quality of life. My case has been a long and tedious one but the troubled marriage halted my recovery and I won't let anything come in the way of my weaning and recovery, ever again.
Valerie in San Francisco, Bay Area