Hello everyone
Well, I have finally come to the end of an almost 10 year prednisolone rollercoaster nightmare.
I have had severe UC since 2000, and have been flaring for 7 years. I have been on pred for the whole of that time - in varying doses, ranging from 2mg to 50mg.
Each and every time I managed to get off the steroids, I got sick and the inevitable UC symptoms flared up with a vengeance - usually after only a few days = back to 40mg and bleeding. I then tapered and the same thing would happen all over again - a horrible vicious circle. This went on for years.
I did the taper exactly as you should. In fact, I was more cautious than most. Once I got to 10mg per day, I reduced my pred by 1/2 mg PER MONTH. Thats right, a tiny 1/2 mg every 4 weeks ( and even then I alternated to lessen the blow). I used rectal meds, made sure I was on the correct dose of Azathioprine, etc. I was told by my hospital that I was on the slowest pred taper they had ever seen!
I also tried Remicade, and various other meds. There was nothing more I could have done. But, still I could not get off the pred.
Last year, after I had been on 3.5mg of pred for 18 months, I started to get unwell. Night sweats, dizziness, fatigue, weight loss, no apetite. I thought I had lymphoma and was petrified. My GI arranged for me to have x-rays and an ultra-sound. Lymphoma was ruled out.
I was then told my symptoms were classic UC symptoms. But, I have had UC for 10 years and I knew it must be something else. I should mention I was repeatedly told I "must have surgery and get my colon out" as I "simply cannot stay on steroids forever". I was told this by countless doctors over the past 7 years.
I did a LOT of research on the net and in summer last year I discovered I could have Secondary Addisons Disease due to long-term use of pred.
My symptoms all pointed to Addisons Disease. I went to my family DR and told her I believed I had Addisons and I needed to be referred to an endocrinologist for specialist tests. She refused.
She laughed me out of her office and said "there is no way I could have Addisons as it is too rare". She then sent me away and told me to "go and have a HIV and syphillis test". I knew it was not either of them. So, I was very upset not to mention angry. I had the tests - all negative.
I went back to my hospital and told them about my un-cooperative Dr and asked them to refer me. They normally cannot do this (for funding reasons) but one sympathetic GI thanfully agreed to refer me. WELL, after 6 months of waiting and being ignored and branded a hypercondriac - I was finally given a synachtnen test to check my adrenals.....and guess what - I HAVE ADDISONS!
It is absolutely unbelievable. Nobody would believe me. And I was right all along. NO wonder I could never get off steroids. Because, my adrenals have effectively shut down. I have now been told by the same Dr's who were pestering me to get off the pred - that it was unlikely I will ever be able to come off steroids. It would be life-threatening.
So, thats my story. I wonder how many other people are in my boat. I cannot believe GI's do not routinely test adrenal function before ordering us off steroids. It is quite frankly, dangerous.
I am no longer labelled as simply "steroid dependent" but Addisonian. The test was uncomfortable but its over in a couple of hours and I am SO glad I finally have a proper diagnosis.
It is unfair that I have had to self-diagnose in the face of so much medical opposition. I have filed a formal complaint against my GP. She should be fired.
I hope others will read this and hopefully avoid the misery I went through.
Take care