PNH and AA

[jackiep1102]

Hi everybody! I'm a newbie around here and thought I'd just stop in and introduce myself. I was diagnosed with PNH in Dec 2009 after presenting with low platelets. Since then all of my blood counts have slowly gone down. These days my hgb is typically in the 8s, platelets in the low 20s and WBC around 2 with my ANC about 1, and my bone marrow cellularity is at 30%. I started soliris almost two years ago because I wanted to have a baby but my blood counts quickly went too low for that to be an option. I recently stopped the soliris because we weren't sure if it was really helping but after two months without it my LDH is way up so it's back to the liquid gold I go. I'm just happy to know its working and that my insurance company isn't spending all that $$$$ for nothing! Other that soliris our plan is to start cyclosporine when my platelets hit the low teens and if no results after 3 months, ATG.
Outside of the medical world I am a trophy wife to the worlds best hubby. Well, trophy wife may be a bit of an exaggeration but I am incredibly blessed to be able to focus on my health instead of worrying about work. I also travel with my husband for his work as a medical device rep. It's not always glamorous but we are super lucky! I am also mama to a cat, Boston terrier and a big beautiful quarter horse. I'm not able to have the kids I had planned to have but my four legged kids do a great job filling in! I'm also hopelessly addicted to scrapbooking and take way too many pictures :)
So that's a little about me. I'm so happy for forums like these. Such a wealth of info as well as the comfort found in hearing you're not the only one in the world with crazy blood. I wish that nobody would ever have to deal with these horrible diseases but I am glad that we at least have a place to come together and share our experiences.

[Neil Cuadra]

Hi Jackie. Thanks for sharing.

Many forum members are newly diagnosed and just learning what they are up against, but you've been in this battle for more than 2 years and clearly know where you stand. I'm impressed that you can appreciate what you have going for you despite battling two awful diseases.

The world has changed a lot for PNH patients since Alexion introduced Soliris and I'm glad you can continue to take advantage of it. I just wish it was helping you more.

My wife enjoys scrapbooking too, using photos, ticket stubs, and other souvenirs of places we've been. Since you travel I guess you can do the same. But do your medical treatments interfere with your ability to travel?

[holmg418]

Glad that you found this forum because it has been a big help for me. I'm sure that you will feel the same as we learn to deal with our blood problems.
Best of luck to you and I hope that you have a great outcome.

[Snuuze]

Hi Jackie,

It's great to read of your upbeat attitude dealing with these nasty diseases. I, too, have PNH and AA. I've been on Soliris for a while and I also stopped it for a month. It's amazing how clear it becomes that Soliris is working once you go off it for a short time! It's definitely the million dollar drug!

I've had ATG and am taking Cyclosporine now. It took a long time for me to see that it was working, but I have been platelet transfusion free since December and am up to two months between PRBC transfusions instead of every 3 weeks.

So continue with your good attitude and enjoy each day as it comes along.

Sue