Help me!Isn't it too early to relapse??

[mnsnyl]

Hello everybody, I was dx SAA 3months ago and had ATG on 15th july, and since ATG treatment I have been transfusion free.I mean exatcly for two months, and my highest plt count was 65 and then started falling a month ago. And today my counts are hgb:7.6 plt:16 wbc:0.7 and anc:0.2 ( wbc and anc have never fallen to such low level before). Anyway I called my hemo and he said, "at first you responded quickly but now ATG's effects have finished." How can it be? isn't it a short time for response and relapse?? Im verry sorry, and I feel very listless,weak always sleeping.. Is there anyone who experienced something like this? Now Im wondering what will happen next? Im just 20 years old and sometimes I feel I won't be able to overcome this Please help me..

[Hopeful]

Hi,

You are still taking Cyclosporine, right? Perhaps you are on too low a dose. Although ATG may have worn off, Cyclosporine should be taking over the fight, although it may take about 3 months to build in your system. Does your doctor do Cyclosporine trough measurements? Also, are you taking a "modified" version of Cyclosporine (like Neoral or Gengraf)?

Have you been tested for genetic forms of the disease like Fanconi Anemia?

Also, have they started looking for a bone marrow match, as you are so young?

One final thing that my doctor encouraged me to do was to take a hard look at my diet. Look at things you may be consuming that others aren't that may be contaminated and triggering the disease. For example, my doctor discouraged drinking any tea, as this is occasionally linked to AA. Some chinese herbs and even honey may also be triggers.

Hopefully, things will turn around for you soon!

[Lisa Z]

Hopeful-
Sorry to hear about your relapse. It does sound VERY quickly. Is a bone marrow transplant something that has been discussed with you?

[Lbrown]

I finished ATG on July 15 and I am still waiting for it to kick in, but I am 46. At first my platelets went up to 384, and the dr said that was an excellent sign, but that it could take 6 months. I'm just over 2 months in. Plus I had c difficile 3 times so maybe it is taking longer. I am taking 10mg of tacrolimus a day as I had too many side effects from cyclosporine.

Deb

[mnsnyl]

Things are getting worse.. According to my last lab report; WBC:0.5 ANC:0.1 . I was taking 250mg Sandimmun neoral and 16mg prednisone daily, and my cyclosporine level in my blood was 211 a week before.My doc decided to increase 250mg sandimmun to 300mg, 16mg prednisone to 32mg. I hope it work soon. I haven’t been tested for genetic forms. Does the IST treatment change if it is Fanconi Anemia?
In my family nobody is perfect match, so they are starting lookin from world marrow bank.
Im very careful about the things I eat and drink. My diet basicly consists of meat, fish, egg, milk , vegetables, no row food. I don’t eat fruits even it is washed throughly, instead my mom make them wait in vinegar and boil, making them compote. And also always washing my hands, wearing mask even in home when I was out of my room. I mean there is nothing wrong that can make difference.

[Hopeful]

Usually, but not always, there are physical characteristics present in FA patients. You can read more at http://www.fanconi.org/learn_more

IST is not a treatment for FA.

It is important to be tested for FA before undergoing a BMT because the transplant regimen is very different. FA patients can't tolerate radiation or chemotherapy.

To test for FA, a blood sample is taken and mixed with DEB to look for chromosome breakage. There are a few specialized labs that do this. Hopefully, your hematologist knows of one in your country or the website can direct you to it.

FA is a rare disease, but it is important that you be tested for it if you have AA and are considering a BMT.