View Single Post
  #6  
Old Tue Mar 2, 2010, 12:22 AM
Gloria J Gloria J is offline
Member
 
Join Date: Sep 2009
Location: New Jersey
Posts: 53
Patience after ATG

Hi Susan,

I was treated with ATG for SAA in Apr '08 and it took almost eighteen months for significant improvement. Here's how I responded to ATG, and keep in mind that everyone's experience seems to be unique.

My last transfusion was early June 2009, and my Hgb has been in the 9.5 - 11.0 range since then.

The WBC bounces up and down, by I'm generally not neutropenic (ANC stays over 1.5), and my platelets have stayed in the 30s and 40s since last July (much better than the 5-10 range where I was for too long). Platelet transfusions never provided more than a temporary bump up for me, and I generally didn't get one unless they dipped below 10K.

RBC Transfusions generally raised my Hgb one point for each unit. Eight months post-ATG, I was averaging five weeks between transfusions, at the one-year mark, I could go eight weeks in between.

I remember taking close to 20 pills a day right after the ATG, and the side effects were not always pleasant. My response took a long time, but I'm feeling great these days. Much more energy, lot less meds, lot less clinic visits. Don't be discouraged if you feel lousy for a while, but do push yourself to do what you can. Exercise always makes me feel better, and it helped me to lose the weight I gained because of too many meds, and too little activity.

Are you taking Cyclosporine? I remember my palms tingling, and my hands trembling. Make sure they monitor your trough level of CSA, it may be too high. You should be tapering off the Pred soon, that alone will make you feel better.

Hope you're better this week, and keep a positive attitude. Let us know how you're doing.

Chin up!
__________________
Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
Reply With Quote