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Originally Posted by Lynn del
Hi everyone:
It's been 1 month since the rabbit ATG and my counts are not responding. I have to have transfusions all the time and neuprogen shots. I started to take 20 mg. of prednisone for the joint pains and it takes the edge off but now I have yeast infections and thrush. I feel weaker. I'm worst then before the tx. before I was having 1 red cell transfusion a month, now I'm at the hospital 3 times a week for transfusions and neuprogen shots. They didn't give me cyclosporin. Last time I had the horse ATG my counts responded slowly but I didn't need transfusions, the serum sickness was worse with the horse ATG. Now I'm sick with congestion and a head cold and very weak. Has anyone had numbness down their legs and arms, if so, how long does it last, it's so painful? Thanks, Lynn
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Hi Lynn,
My first treatment was with ATG, Cyclosporine, Prednisone, and Neupogen. I was in the hospital for 21 days after the last bottle of ATG. For that time and for about a month after I got out, I had to take a lozenge 5 times a day and let it dissolve in my mouth. That was to prevent thrush, which is merely a sign that your immune system is very compromised. The lozenges were nothing more than an oral form of the kind of meds they give for vaginal yeast infections. They also wanted me to rinse my mouth with a salt-water prep as much as possible.
Before I went in, I was getting a unit of red and platelets once a week. That continued for the 3 weeks that I was in the hospital. The platelets were worse until I was discharged. After that, I only had one platelet tx until my relapsed counts required it nine months later. I still needed red blood a couple of times after I was discharged, but by 3 months out I had my last one for many months.
When I was in the hospital, they drew blood for a CBC every morning and gave me the results. It was VERY depressing to see my counts decline every day. Things looked bad. But they finally slowed their decline and started to stabilize at a low count.
To be frank, I wonder what your docs are up to. No Cyclosporin? No Prednisone (at first)? Well, I guess they have their reasons; after all, Prednisone comes with its own set of possible problems.
Bill