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jobra818 Thu Jan 22, 2009 12:37 PM

New-20yrs of AA
My time has not been easy and I am looking for support w/ people that have suffered like myself. In 1988 at age 12 (female), I was dx w/ severe AA and was given a 10% survival rate. I did not have a bone marrow match so it was on to ATG w/ androgen (oxymethalone) therapy. In 8-9mos. I showed enough of an improvement that the transfusions I was having 2-3x a wk stopped. By 1990 I was able to start participating in gym class. I did well until the spring of 1992 when I contracted the chicken pox and later was dx w/ ITP adding cyclosporine to my list. In the end of 1994 oxymethalone was being discontinued by the drug companies and it was on to find another drug. A year and a half later Danacrine did the trick. Up until 2004 I have been taking high doses of Danacrine with a low dose of cyclosporine w/ normal blood counts. I started to lower the dose of Danacrine to find that it was going to stop working all together and my counts dropped like crazy. Dr's increased the cyclosporine and are weening me off of the danacrine altogether. That brings me to the fall of 2007 w/ a new dx of PNH treated w/ coumadin and adding that to my repertoire. Two yrs after my counts dropped they are back to normal but now I have to lose weight from what I gained. It is very hard to keep weight down when you feel lethargic 24/7. Needless to say being on androgens for the past 20yrs. does nothing for a social life. I have a deep voice, muscular, and have been mistaken for a man on several occasions. I have always tried to let that sort of stuff go but after 20yrs of dealing w/ an illness where you know no one that is suffering w/ the same thing becomes very hard. I have always been a fighter but some of the fight feels like it is fading. I am very glad that a volunteer from AA&MDSIF led me to this site, thank you.

Neil Cuadra Thu Jan 22, 2009 01:58 PM

You're certainly been in this battle for a long time, jobra818.

Nobody wants to be on long-term steroids and have to deal with their undesirable side effects, but we know that you and your doctors have to pick drugs that will keep your counts up. Let's hope you can find a better combination.

No two stories are the same, but you might want to read the profile of Andrea Pecor, who has also had AA for more than 20 years. When aplastic anemia is part of your life for so long, it can be hard to remember that you are a person first and a patient second. I hope it helps to have other patients to talk to.

Since you are in Kansas City, it wouldn't be a long trip for you to attend the AA&MDSIF Patient Conference in Indianapolis this coming July, where you could meet other AA and PNH patients as well as doctors who are experts on these diseases.

jobra818 Thu Jan 22, 2009 09:13 PM

Thank you Neil. I have been wanting to go the conference for years and this one might be the one that I am able to attend. I will be looking forward to meeting other people like myself. It is such a lonely world if we couldn't network. Thanks again for your encouragement.

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