[Hopeful]

Hi Sarah,

I hope I am not too late in getting back to you!

I would ask your doctor how many SAA patients he has successfully treated with immune suppressive therapy. You need to know this, as his treatment is not conventional. It will be an uncomfortable question to ask, but you must do it. If he has only treated a handful, it is critical that you find another doctor. Cyclosporine alone is not the treatment of choice for SAA.

Get a copy of your bone marrow biopsy results and all of your lab work. What other tests were done to rule out other diseases? Did they do a differential to see your Absolute Neutrophil Count? What is your bone marrow cellularity? Do they think your low blood counts are the results of a virus/infection, chemical exposure, or drug? Are your counts starting to rise?

SandImmune is an older drug that is less prescribed these days. The newer modified form of cyclosporine (like Gengraf or Neoral) has better absorption in the body. The dosing of modified cyclosporine and SandImmune is very different. So, if you have the option, you should switch to the more conventional modified form of the drug. Just be sure that they don't give you the same dosing!

Prednisone is also a warning flag to me that your doctor may not be an expert in this disease (or that he is uncertain of the diagnosis). The SAA experts will say that prednisone has no place in the treatment of SAA.

Do you have other options for a second opinion there?

Be brave! This is a serious disease and if your doctor's aren't treating it seriously, you need to go somewhere else.