New to the site with AA

[ccartbmw]

Hi Everyone,
I was diagnosed with AA in Jan 2005. ATG administered wrong,spent 5 months in the hospital. Well, things turned around in 2006 went into remission until May of 2007. Doctor uped cyclsporine to 250 mg a day it is now Jan.2008.No response to meds. Doctor wants to add Aranesp. But I am afraid of side effects. My levels are 40 platlets, 8.1 hem, 2.6 white cells. Any information will help.Does anyone use Aranesp for AA I noticed it is used mostly for MDS...

Thanks for the chat
ccartbmw

[Connie]

Hello ccartbmw,
I know how you must feel about the turn around with AA remission. It happened to me also. A long time ago. So when I had gone out of remission, I was once again treated, only ATG the first time and ALG the second time. My Dr. advised Procrit. And I used it for a couple of years. Then he put me on Aransep, as you don't need injections as often. I was on it for about 5 years with absolutely NO side effects. It worked very well for me. My HBG went up and I didn't need anymore transfusions!
I have read where some other people have had side effects from Aransep, but I think it works well for most. It is something to think about, if it were me, I would try it, but I was in pretty bad shape, so was willing to try almost anything. Just keep in mind that if you do try it, it might take a couple of months to start working. Having red blood cells that are too low is not good and has its own bad effects. Transfusions have side effects also. Which ever you decide to choose, I do wish you the best. Hang in there, hopefully the Aranesp will really help.
Connie

[Julie Perrotta]

hey, good to hear your doing good. while i was reading this, one thing caught my eye.. Somthing i absolutely hate..
"cyclsporine".. this is random but, you know when there is somthing you smell or eat, and if you smell it again it brings back a memory.. Blahh, cyclsporine is probably the worst melling and tasteing thing i have had in my life. I use to have to take the liquid by mouth, but luckly my dad put it into gel caps for me. haha, i was only seven and i can still remember the smell and tatse.. Grosse!

[Connie]

Julie, you are too funny. LOL I hated Cylcosporine too, but never had the liquid. I remember that we affectionately called it, "skunk pill." But the good news is, that it works for so many! So I guess we have to keep that in mind. It's what is down the road we look forward to reaching, and that is healing.
Connie

[Julie Perrotta]

haha!! I used to say it smelt like a skunk!! but i never smelt a skunk before haha. My parents never smelt it the way i did.

"It's what is down the road we look forward to reaching, and that is healing."
this is so very true. I like it!

[Connie]

Julie, I have smelled a skunk, and those pills smell just about the same. My parents were surprised at the size of the Cyclo! Those are large pills!
I wish the best in healing for you!
Connie

[Neil Cuadra]

I remember taking a big step backward whenever Ruth was going to open her cylcosporine. No use having both of our noses suffer!

[Julie Perrotta]

hahah! wow thats amazing.