View Single Post
  #1  
Old Thu Aug 27, 2015, 05:29 PM
HopeW HopeW is offline
Member
 
Join Date: Aug 2015
Location: florence,sc
Posts: 27
AA then Lupus and Now MDS?

Hi, I am so overwhelmed and confused for the past serveral days.
In 2005, I was found to have low counts and the BMB showed hypocellularity of 15%. and then I was labeled to have AA. I had abdominal pain later on and they did exploratory laparotomy May 2005, and then i became transfusion dependent for 3 years. During this time, I had ATG with Cyclosporine 09/2005, it did't work, I got heart failure soon after that 10/2005. I had recurrent abdominal pain, vomiting and nausea until 11/2005 diagnosed to have SLE. Had used prednisone /cellcept, Rituximab, lupus seems better, no digestive issues but still very low blood counts when on cellcept and pred, neut 0.2-0.4 and need blood and platelet transfusions.
May 2008, had shingles and in critical situation, then used IV Hydrocortisone 50mg 3 times a day and then oral pred. Stopped cellcept because of infections. and two months later, my counts holds and I had been transfusion free for 7 years(they were still low, but no need for transfusions).

But my counts started to dropped in the last year, mainly RBC, up the pred to 60mg this April. it seems didn't work.
On 05/2015, I had HGB of 2.1 and being admitted to the hospital and get 5 units of blood.
And the local hematologist caught the blast in the CBC and I had a BMB, it said 9% blast in the marrow. I was so scared to have all those nightmare again. The BMB report are only partial and the results about the cytogenetic part are not ready yet.

What should I do now? Felt so devastating.

I am at SC, but may move to dallas TX next May. Any one has recommendation about where to go for second opinion or treatment?

- Hope
Reply With Quote