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AA Aplastic anemia

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  #1  
Old Sat Nov 22, 2008, 03:11 PM
Lynn del Lynn del is offline
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Location: Port Chester, New York, USA
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Rabbit ALG

Hi everyone:

Soon I'll be going for a rabbit ALG treatment. I had the horse ATG 10 years ago and I had a really bad case of serum sickness. The joint pains lasted for years. My platelet counts only went up to 40 but the red cells and white went to normal for 1 year, then I had to get transfusion again, but only 1 to 2 times a year. Now I have a transfusion every month when my counts go to 6. Now my platelets are between 4-8. I'm very anxious about the treatment because I had such a bad experience last time, but I can't go on like this anymore. I try to stay upbeat but it's hard sometimes and I get depressed. My brother and sister were not a match for a BMT.
The problem is that I look good, I don't look sick at all. But I'm so tired and everything I do takes me so long. The last few years I have become extremely sensitive to chemicals, perfumes, medicines, etc., and I get itching, rashes, and my tongue will swell if I breath in something. I have gone to many allergists to no avail then the meds they give cause a reaction.
I was wondering if anyone else has these problems. Any help would be great !! Lynn
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  #2  
Old Mon Nov 24, 2008, 02:04 AM
michelle_lapuz michelle_lapuz is offline
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good luck with your second round - I could sympathize with you regarding serum sickness, it is absolute torture....but at least they could keep you on sol-medroled up a bit longer and maintain your Prednisone longer (fun!!) to avoid a second episode....I also react to everything these days with spontaneous hives ect. I think it is from all the antibodies circulating in our systems from all the platelets we've received....

I hope this one works for you I hear the rabit is more powerful than the horse....

michelle
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Old Tue Nov 25, 2008, 10:17 PM
Neil Cuadra Neil Cuadra is offline
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One advantage you'll have this time, Lynn, is that they'll know in advance about your previous reactions and can watch for the symptoms more carefully or treat them prophylactically.

Best of luck!
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Old Tue Dec 2, 2008, 04:02 AM
Kim2007 Kim2007 is offline
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Good luck I hope the best for you!
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Old Wed Dec 3, 2008, 12:30 PM
Lynn del Lynn del is offline
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Location: Port Chester, New York, USA
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Rabbit serum

Thanks everyone for your support. Does anyone know how long after the treatment you are suppose to be on prednisone. I was on so much prednisone before the last treatment that I started to get shakes and disoriented. Maybe another cortisone would be better for me. During the horse tx they gave me 200 mg of prednisone a day. Is that normal?
Thanks, Lynn
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Old Sun Dec 7, 2008, 06:53 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Lynn.

As you know prednisone is an integral part of ATG/ALG treatment and, since everyone responds differently, there cannot be a set length of time for being on it. A dose of 200mg/day isn't unusual at the start of treatment, but it's usually stepped down within a week or two to something much less. With your history of serum sickness, your doctor may well want to keep your prednisone level up until you've passed the point that it might happen again.

When I came home from the hospital after my transplant, I was still on about 50mg/day. Although we were able to taper down from there to about 20mg/day in a few months, it took a couple of years before I could get off it entirely. One reduction might cause an increase in my mouth GVHD symptoms, so we'd increase it again and wait. It's easy to get frustrated with such a slow taper, but it is important to go slowly to prevent flareups and relapses.

If you end up with severe reactions like the shakes and disorientation this time, be sure to let your doctor know. It could be a combination of medications that cause those kinds of symptoms and not just the prednisone itself.

Hope this helps.
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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