Newbie Tells Her Story

[Debbie S]

In am 51 and newly diagnosed with Aplastic Anemia. I have received ATG and am on 250mg cyclosporine a day. My guess is that my AA was induced by an anti-seizure med I was taking. I had to get new medical care this week due to my diagnosing Dr. having no answers or real knowledge of this disease. Many mistakes we made in my early treatment that have left me terrified. I would like to know if anyone with AA has experienced nausea, extreme bone, joint, muscle and skin pain. I have to take pain killers just to be semi-normal. You'd think I was 100 yrs old. Help!! Debbie

[skoopman]

I only have a sec but wanted to ask when your ATG was? Serum sickness can develop around 2-3 weeks afterwards. My daughter got it, it was excruciating bone, joint and muscle aches to the point she refused to move for anything but the bathroom and even that was a struggle. A heavy schedule of steroids took care of it.
Suzanne

[Nina van Nunen]

Dear Debbie,
I received ATG treatment in Jan last year (horse) and suffered with joint aches and skin burns. I took heavy doses of Prednison which helped a lot and from time to time I took some tablets for joint pains described by my doctor. I bought a good cosmetic cream (vichy) from the chemist and kept my skin problems under control with that. The pains do get better even though at the time you think it will never go away... I am currently in hospital as I have just received a BMT yesterday afternoon and feel like a million dollars!!! Yes, quite amazing that I am feeling so good so quickly! In preparation for the BMT, I received another round of ATG treatment earlier this week (Rabbit) without any side effects... This time around I am also taking 110mg prednison intravenously per day, so I have no joint aches form the ATG.
Hang in there, it gets better, believe me... The cyclosporine is not a nice drug to take, but your body eventually starts to cope with it. I still have a feeling of tingling in my finger tips and toes particularly when I put them in water.
Try a good cream for your skin, I find it really works well.
Good luck!!
Nina

[Debbie S]

You go girl, with that BMT. Get well and have a bunch of fun. Keep me posted on you progress, please. I achy but I'll hang in there! Debbie