AA - Expected Outcomes?

[Catherine2008]

Hi
I am 49 years old and was diagnosed in early May 2008 with AA. At the time of my diagnosis, I was in excellent health.

I was admitted to hospital within a few days and I received ATG (rabbit) and I had no serious side effects. I was put on cyclosporine 300mg daily (along with many other drugs).

In June 2008, I had an infection (started with chills & high fever) and I ended up in the hospital for 2 weeks.

I experienced severe nausea in July but a change from Sandoz Cyclosporine to Neoral Cyclosporine appeared to correct this problem.

In August 2008, I started to show positive results. Currently, at 5 months post ATG, my counts are now stable but low - Red Blood 93 (normal 115-155), Platelets 70 (normal 115-400) and White Blood 2.9 (normal 3 - 10.5).

I am still easily winded and cannot do anything strenuous but I am able to work 20-30 hours/week.

From early May to end of July, I received 13 units of blood and 7 units of platelets. I just had my pic line removed, as my last transfusion was the end of July.

My doctor will reduce/remove cyclosporine within the next few months provided my blood results increase or stabilize.

I am wondering what are the possible expected long-term outcomes?
If patients experience remission, typically how long does this last?
If this treatment does not work, when do you look at BMT option?
I do have 2 sibling matches.

Any advice or information would be helpful.

Thank you!

[paulaespada]

Hi Catherine!


Your story looks like my husband story, since he was diagnosed with AA and treatment.

He is doing fine now. Finished ATG in June 2008. Now he is on cyclosporine (150/day).
I was posting just the same questions you're posting!

He has no siblings and so a BMT was not considered because his age and good prognostic. Now I wonder what this "good prognostic" might be...

I wish you all the best. I'd love if you could be in touch. I give you my personal email: espada.paula@gmail.com

[Connie]

Catherine, sounds like you have had quite a time. But your counts don't look bad to me. The one thing I am thinking is that it really hasn't been very long since you have been treated with ALG. I had kind of a similar experience as you. Was treated with ATG, was in a very short remission, then treated with ALG. I am happy to say that now I am doing pretty well. But it took a long time. A long time for my counts to go up and a long time to feel as well as I do. That was about 7 years ago that I was treated. Everyone has a different response time, and yours sounds pretty good to me. But I am hoping that your Hem. isn't premature in taking you off of Cyclosporine. I was on it about 3 years after treatment. Or at least it seems that long to me. And if you do stop taking it, be sure to do a very slow taper. Took me about 6 months or longer. And if your counts drop much when you taper, slow it down some more. As far as energy goes, that might take a while. These last couple of months, I am not needing to nap as often. But I still do get over tired and have to rest. I do know of some who are doing well in a very short time. Just listen to your body and give it time and the rest that it needs.
How long does remission last? Well, that can really vary. I have heard of 5 years to 20+ years. I am hoping for the 20+ years.
For me, I looked at BMT as a very last option. Not to be taken lightly. Only when nothing else is available.
I hope this all helps some Catherine.
Connie

[Catherine2008]

Connie & Paula

Thanks for your responses!

My Doctor is in no rush to reduce cyclosporine - it is just me that is impatient - thank you for the information on the slow taper.

I'm still new to all this and I am completely stressed out about what will happen in the future - I need to learn to take this day by day.

Thank you!
Catherine

[Connie]

Catherine, I know that day by day thing is hard, but it is best when it comes to AA stuff. I was always in a hurry too, but knew it best to do as Dr. orders. Remember, slow and easy wins the race!
Connie