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Old Wed Nov 7, 2018, 01:06 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 721
Hi Su,

Let me preface this by saying that I am not in the medical field but just am opinionated patient

I can understand your sense of confusion and frustration. Aplastic Anemia (AA) is a rare disease and a hepatitis induced variant is even rarer. The good news is that the doctors that specialize in AA will be very interested in your case

It sounds like the doctors are waiting to see if your marrow will come back on its own. Sometimes this happens. If your counts start rising on their own, then you may be lucky and no treatment will be necessary.

If things are not better or showing signs of improvement at 3 months, the doctor's may want to consider next steps even though you may not fit the criteria for severe aplastic anemia (SAA) yet.

Unfortunately, there are no real standards for the treatment of moderate aplastic anemia (MAA). So patients like you are left in a state of limbo. This can be especially disconcerting when you just want to start fighting the fight to get on with your life.

There are some things that you can do now during this watch-and-wait time to make sure that you have your ducks-in-a-row should your counts start declining. It is is better to do this now then when you are transfusion dependent and in crisis mode.

First you must find an expert in AA. An excellent hematologist may see only one case of AA in their career! An AA expert will see many. Do not be shy about asking any hematologist that you are considering how many patients they have successfully treated with AA. Do a google search to find doctors in your area that list AA as their interest or specialty or that have published papers on the topic. They may be the ones you are already seeing. A quick phone call can confirm.

You should also find a hospital with experience in treating AA, should you need Immune Suppressant Therapy (IST). Experience matters here again. Should you have adverse reactions to a treatment, you want a hospital that knows how to respond. Usually if you find an AA doctor, they will be able to direct you to a good hospital should you need treatment. Don't be afraid to ask how many AA patients they successfully treat with IST per year.

Finally, I would ask the AA specialist that you are considering what treatment protocol they use for IST. This can vary, as some research hospitals may be more experimental.

It doesn't hurt to consult with more than one AA specialist. They may have different treatment protocols or opinions on when to begin treatment. Don't just consult with a transplant specialist. They may not be able to unbiasedly advise on IST treatment. That was my experience.

The good news is that you are catching this early, you have a support system, and you are coming into this strong. Hopefully, your marrow will be able to fight back on its own. If it can't, and you need to start treatment, it is good to have a plan that you believe in so that you can fight the fight and get back to living - and you can get back to living after an AA diagnosis

Best of luck!
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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