Hi, my name is Carole and I was just diagnosed with Clarksons. I spent 2 months in ICU with many confused Dr's and was able to go home for 4 weeks and relapsed and spent another 2 weeks in the hospital. My G.I. specialist currently has me taking 15mg of Prednisone and I'm feelling very shaky, he wants me to drop it down to 10mg and thats when I end up in the hospital. My question is: Is he dropping the mg's to fast? He also just started me on 125mg of Azathioprine to hopefully counter act the Prednisone, my concern is my Dr. has never had a patient with this disease. I live in constant fear of relapsing, is there anyone that is willing to share there storey with me?

Hello Carol I'm Jeff. There are very few Dr.'s who have any experience with this syndrome. The thing to look for in a Dr. is not expertise but the willingness to contact and discuss treatment with the experts. The two most important ones right now are Dr. Druey at NIH, and Dr. Greipp at the Mayo clinic.

Hi Carol, Please contact Arturo on this. He can send you some updated information on this disease that you can take to your doctor. Your doctor will really have to be Pro Active in this. And he needs to contact Mayo Clinic for Dr. Greipp. I was diagnosed in June by a heart doctor that was a friend he sent me to Mayo. And he is now proactive in studying this disease. We are on our 2nd appeal to the insurance co. to get the IVIG. I spent time in hospital and did not think I was going make it. But I did from the help of my doctor. He figured it out by the 2nd day. You may want to do some research on the computer about the disease. Here on rareshare everyone is great at trying to help each other. God Bless you and good luck! Hang in there, Annamarie

Carole, I was put on 60mg of Prednisone back in January and its side effects nearly did me in. I am down to 10mg and my Doc wants me off it entirely. It took 2 1/2 years to diagnose my SCLS and I am now receiving IVIG therapy thanks to the VA. So far so good. Good luck! ...Donn

Dear Carole: Welcome to this Community! You are the first from British Columbia, but we already have other Canadians from Alberta, Ontario and Quebec. I suggest that you and your doctors start by reading the materials posted here in the Disorder Details and Disorder Resources sections. If you need the text of any of the medical articles summarized in Disorder Resources, let me know at _aporzeca@american.edu_ and I'll send them to you. For your information, steroids like Prednisone are not a recommended form of therapy for SCLS, although they can serve a very useful purpose in large doses, for a few days, during a severe episode.