new to site

[Susan]

Hi,

I was dxed with PNH/AA in 1998. It took a while to get the diagnosis. I went to several good Chicago area hematologists but was dxed with ATP, then MDS, then AA vs MDS. I finally self referred to NIH in Maryland and received the correct diagnosis. Should you have trouble getting answers about your illness I strongly reccomentd the NIH for the "complicated cases." If you have PNH we can talk here but I spend more time on the PNH website. I do see the value of this forum though, especially if you have PNH and other diseases. You can then check out what treatments others are getting for AA or MDS. Some have both MDS and PNH, or like me, both AA and PNH. PNH had some risks such as potentially deadly blood clots so you will want check out the PNH disease site for sure.
Susan

[Susan]

Hi,

I will be visiting the site more often now as my platelets and wbcs have been steadily trending down. I did coast along for several years with almost normal plt and wbc counts. No major problems so far with the PNH. An FYI, I will now be posting as suz. I believe there is alread a Susan on this board.

I hope everyone is doing alright.

suz

[marc]

Hi Susan,
It's Marc in Aurora. I just discovered this site as well. Normally I am on the PNH site with you but my AA has also become an issue of late so I want to check this site more often also.

I hope your counts rebound soon. Are you going to try any type of treatments for it?

My PNH is starting to be under control with the use of Soliris but the AA hasn't responded to anything yet. I've tried ATG (Horse) and Procrit & steroids. I am averaging a blood or platelet transfusion every 10-14 days. I may try a second round of ATG (rabbit) or Campath or Zenapax. My Hem is looking into those options. A BMT terrifies me so I don't want to try that option yet.

Still want to get together with the midwest contingent of PNH/AA folks for dinner. In the meantime there is a benefit happening at Walter Payton's Roundhouse this Nov. 2nd to raise money for PNH patients and research. Please check out the website www.themrf.org for all the info. Please let me know if you can come, Alice and I would love to meet you.

Talk to soon,
Marc

[Susan]

Hi Marc, back here again more often. I'm sorry I haven't kept up with any new treatments you may have tried, last you told me you were waiting and hoping for your (2nd round?) of ATG and long term cyclopsporine to kick in.

Have you read some of the successful and a couple of unsuccessful Campath treatment stories around this site? Gives me some hope in case ATH/cyclo doen't work for us. The treatment is far shorter ( no cyclo needed) and side effects not nearly as bad. Keep in touch!