New to the site, Diagnosed in November with AA

[Kim2007]

Hi all I was really glad to find this site it helped me a lot,
I am a 29 year old female and was diagnosed in mid November with AA after two bone marrow biopsies. They do not know the cause but my Dr. thinks it was brought on by some sort of auto immune problem. I was seeing another Dr. nearby who had diagnosed me for about six months with itp since at first it only seemed to affect my platelets really badly. I recieved horse atg on November 16th about a week after my second bone marrow biopsy (the first was actually just an aspiration and they didn't see anything abnormal till they took a piece of the bone at the second dr's office), I did not handle the horse atg very well and ended up being in the hospital about ten days. The first six weeks out of the hospital were probably the hardest. I was on Cyclosporine and Prednisone and ended up kinda bouncing in and out of the hospital and had quite a few transfusions to sustain myself. They were talking about doing a second atg this time with the rabbit, but over the past two weeks I actually went up 30k platelets to about 90k and my wbc went up substantially too. My rbc is close to normal but I am still exhausted most the time for some reason. My family is very pleased about the increase and I am still on the Cyclosporine which is at 450mg a day at this point. I do have a brother who is a match for bone marrow transplant if needed but they wanted to try this first and it does seem to be working so far but they have not started taking me off the cyclo yet. Thank you for letting me tell my story and it has been great to read everyones stories on here. It is so nice not to feel alone in this. When I was first out of the hospital it was amazing to me that just a year earlier I felt normal and how fast my life had changed completely. I am thankful every day for the support I recieved from family and friends.

[skoopman]

Kim,
I am sorry you have AA but pleased to hear that the ATG may be working. I hope your counts continue to increase!
Suzanne

[Connie]

Kim, I am sorry you have AA and that you had to go through all of this. I know much of how you feel, because your story and mine are very much alike. But with you, your counts are going up faster than mine did. I think that your progress so far sounds very good. As long as your counts are stable or keep going up, I would not consider any other options at this time. But that is up to you. I am now about 6 years post ALG, and doing very well. All of my counts are in normal range, but I do still take a nap each day, get tired easily and have some memory issues. So, maybe the tired thing hangs around for some of us. But, it does get better. So hang in there. Things sound good to me!
Connie

[ccartbmw]

Hi Kim,
Sorry to here about your disease. I was diagnosed 3 years ago. I came out of remission last May. I have been on cyclosporine 250 mg for the past year with no results. (Except I have beautiful hair after losing most of it after being in the hospital for 5 months). I try every day to get up with a positive attitude on life, because you never know when it is your time. I had a bad response to my first ATG, my Dr. is scared about doing it again. On my next visit which will be in March they will decide if we need try it again. My sister is a match for the transplant but I am very scared to go that route before trying another treament of ATG. The first time I had the treatment we saw no results for almost a year,and after I went in remission for 2 years. They say this type of disease you have to be very patient as it takes along time for the treatment to work. But the treatment is only a bandaid and not A CURE. Well thanks for listening and good luck
Carol

[Jbsx19]

Hi Kim,

Our stories are very similar. My story is posted in Tell Your Story. I was diagnosed with VSAA in May 2003. I was 40 and in the best health of my life.I was taking an antibiotic and under a great deal of stress which both may or may not have contributed to the AA. Anyway, I ,too,opted for the ATG/Cyclosporin/MMF route even though my sister is a complete match.Was in the hospital about a month at NIH. I was discharged with 28Kplatelets and just even white cells to be somewhat safe.I can tell you that for the first 6 mos on the cyclosporin , MMF ,Neupogin and pantanmedine, I was weak,tired,etc..etc.. from 6 mos to 18 mos I was on just the mycophenolate(my clinical trial drug) still with muscle weakness and just not feeling myself. It took a good 2 years after diagnosis to get back to my old self physically,enough where I could exercise,workout,etc. The good news is that I am now almost 5 years out and 46 yoa. This did effect my hormones somehow,so I am dealing with hot flashes,skin issues,etc,but who's complaining since the alternative isn't a place I want to revisit. Just keep in mind that the drugs themselves(probably not the AA) that are causing your weakness,tiredness,muscle aches,etc..etc.. but it will get better!! My platelets were 302K yesterday!! Hang in there...

Best Wishes and Stay strong,
Judi

[Kim2007]

Thank you all for your responses again it felt good to find others to discuss this who actually know how it feels to go through it although I feel bad that any of you had to go through this as well. They just decreased my cyclo by fifty because my levels were too high so Im kinda nervous of whether that will cause my platelets to drop. I will find out friday. I am still pretty tired and am taking daily naps as well. The wierd thing is my rbc is not that bad at all so maybe you are right about it just the drugs they have me on. I am really happy though because I am on half the medication I came home on. I had a really hard time with the prednisone as well so I was dreading a second treatment so fast. I only really had a problem with my rbc and my wbc counts the first six weeks out of atg and for a bit on and off before treatment. What seems to be stubborn in my case were the platelets.

[Kim2007]

I just figured I would update my progress. I am still on 400 mg a day of the cyclo but as of about two weeks ago all my counts are in the normal range. I was really excited especially about the platelets which is what I had the hardest time with. Right now they are at 163k. They said when my counts stop rising they will start to take me off the cyclo as well too so now I am just watching and waiting. I am really hopeful now that my counts did reach normal.

[ccartbmw]

Hi Kim,
Glad your levals are so high(163 for platlets) that is great. I had the ATG April1st. I get my levals checked next week will let you know the results. I am doing water arobics , I love it . It takes my mind off of being tired. But my back and stomach it really bothing me due to the shingles.
Bye for now
Glad you are feeling better
Carol

[Kim2007]

Today was my last day on the cyclosporine so Im really excited. I am a bit nervous also since I had such good results with it. My red blood is still below normal but it always was slightly low. Platelets were 220 thousand which is pretty great and white blood cells were in normal range also. It made for a very merry Christmas since last year I spent Christmas eve in the hospital.

[Missyblue]

Good luck!! I am down to 100 mg cyclosporine every other day. My ATG (horse) was 11/07, My counts are still low, red 32, plates 69, whites 2.6. I hope you never need another transfusion! Happy Holidays! Any many many more!!!!!

[Kim2007]

I have been very lucky it seems so far anyway, knock on wood. I went in for horse atg also in 11/07. I hope that your counts do get better and that you have a very nice holiday. When they told me I had saa they put me in the hospital for atg that week so it was kind of rushed for me and I didn't have a whole lot of time to process it till after I got out. Merry Christmas to you also and I hope that everything gets better for you too.