ATG response -new to forum
 

I am really glad to find this forums. My mom is diagnosed with SAA in China and she went through ATG (Rabbit) early June. Her WBC was 0.7 before ATG and went down to 0.2 right after ATG. Her WBC started to climb graduately 10 days after ATG stopped (5 days therapy). Today, her WBC is about 3.8 (was above 3 for almost a week). However, other than WBC, RBC and platelets counts remain the same as before (RBC~60 and PBC <10 without transfusion. She had a urine bleeding for 2 days and had blood spots under skin for 3 days. all gone now). She need frequent blood transfesion (about every other day or 3 days for PBC and every 4 days or longer for RBC). Her doctor told us not to be too promising because normally, at least 2 of 3 counts should show some signs by now. Is this true? I thought the increase of WBC is a promising sign. I have read other threads and know it takes average of 3-6 months or even longer to response. I wonder if any of you have the similar experience as my mom (with increase of WBC first).

In addition, my mom became very weak. She lost almost all her strength. She had itches, bad temper, vomiting (seems stop now) and some other reactions after ATG treatments. Are these normal?

I am in US and it is really pain for me not be able to stay with her fighting for her disease. I plan to take some time off next month. I want to be educated as much as I can and preapre to fight through this disease with her. Thank you!

Atg
 

Hi plqc,

Sorry to hear about your mom, I know it feels terrible not to by with them. I am not able to be with my son and I know sometimes it feels intollerable.
I am new to this as well , but my son had ATG in March and just became transfusion independent. His numbers were as low as WBC 2.2, now 3.5 ANC .01 and now it is 1.0. His plateletts were 5 and now they are in the 90's. I would not give up hope and not panic. I think panic and fear were the worst. I was sure he would die, and I think a lot had to do with not being able to see him. I can't give you much advice past that, but there are many on here who will.

Hang in there, and I will keep you both in my prayers.

plqc,

As you noted, it's too early to say if your mom's ATG treatment has worked. I'm surprised that her doctor would make predictions this soon after the treatment. I don't know whether or not her higher WBC is a sign that the other counts will recover as well, but it's certainly good that she no longer has a white cell count that's so dangerously low, since susceptibility to infection is one of the more risky aspects of SAA.

Many patients have reactions during ATG that fade after the treatment is over. Some side effects (e.g., rashes) are common, although "normal" might not be the right word for it. If your mom's symptoms seem to be disappearing then they may be leftover from the ATG and you won't have to worry about them much longer. Remaining symptoms could instead be from her continuing low counts or even side effects of the transfusions. They sound annoying but not life-threatening, and the doctor may be able to recommend ways to treat them symptomatically while you give the ATG time to work.

I'm sure there are differences in treatment approaches and medical care in general in China compared with what we're used to in the West. Some is cultural, reflecting the history and traditions of medical care, and some results from statistical differences in disease prevalence and treatment experience in different patient populations around the world. Aplastic anemia is 2 to 3 three times more common in Asian countries than in the U.S. and Europe.

I can only imagine how difficult it is for you to be so far from your mother while she's battling aplastic anemia. Will you be able to go to China to see her and help her in person?

Hi,

Is your mother still taking prednisone? If so, this can cause a false rise in WBCs. If not, the increase in WBC could be promising. They were the first to rise for me as well. She is still _very_ early in her recovery, so hang in there!

thank you for all your replies. I doubt she takes prednisone but I am not 100% sure. I also felt it is too early to say if the ATG has effect or not. My mom pre-treatment condition was very bad/critical and our doctors were hesitating to use ATG because they were worry my mom may not survive through the treatment. Anyway, her pre-condition may be a reason why they told us not to be too optimistics (it may be also culture thing).

I will take Aug off and fly back to see my mom again. I was in China during May when her blood counts failed suddenly (she was admitted to hospital because of Jaundice in early April. Her boold counts dropped suddenly when she recovered from Juandice (not hepititas)). Anyway, I was with my mom when the diagnostics were done. It was painful moment in my life. I am fine now. life has to continue.

Anyway, thanks for sharing and I will keep my mom's status updated.

Hi, i was asking these very same questions about 90 days ago when my brothers docs were convinced that his atg wasnt working. 90 days ago he was getting trandfusions of platelets or hem. once or twice a week. As of this week his counts were pushing the low end of normal. After the Atg his white count responded almost immediatly but platelets and hem. took almost another 3 months to show any improvement. I agree with the other posts that it is to early to tell if the atg is working or not. I hope for the best for you and your mother. Bill