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AA Aplastic anemia

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  #1  
Old Tue Sep 27, 2016, 11:59 AM
FrankW FrankW is offline
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Side effects of ATG and cyclosporine

Would those who have had ATG and/or cyclosporine therapy give some feedback as to what the side effects are? Thanks
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Old Tue Sep 27, 2016, 07:16 PM
Margaret W Margaret W is offline
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I had equine ATG back in the late '80s when the protocol involved giving it for 16 days. I had a precipitous drop in all cell lines, fever, chills, massive oral hematomas and ulcers - and eventually developed severe avascular necrosis in all major joints. I also had 'roid rage, but because my default mode is always humor, I thought I was pretty funny even though other people didn't. I was confined to bed due to a platelet count of 0 and was required to let someone assist me to the restroom, but I thought that was nuts and I didn't abide by it. It took me two months to recover from the above-described effects of ATG, but three months to the day after I was discharged from the hospital, I won a Detroit legal professionals' spelling bee. IOW, it did not have permanent effects except for the avascular necrosis and that is and was the worst thing to come out of it.

Now they want me to do rabbit ATG because "severe aplastic anemia" is back, but I just don't have my game face on for it this time and am tempted to rule it out completely. I wouldn't not do it because of the side effects but because I have so many antibodies to transfusions that I doubt I'd survive the transfusions themselves.

Best wishes to you!

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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Old Wed Sep 28, 2016, 01:23 AM
Hopeful Hopeful is offline
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Hi FrankW,

Everyone is different, but the first day of ATG is always the worst. They usually do a pre-test to determine your sensitivity to the drug and will adjust the flow rate of the ATG accordingly (or decide that it is too risky to do ATG at all!) They will also monitor you very carefully that first day/night. You will need lots of transfusions through the whole ordeal.

For me, the first night of ATG was like a really bad flu. I had the classic shake-and-bake: a fever of 105.6 and severe chills. It was scary, but then it was over. By the third day, I was up and walking around the hospital most of the day.

They give you a bunch of drugs to control nausea, serum sickness, etc. I always required tylenol before the ATG, as I would get a severe headache when it was administered.

Cyclosporine is hard if they start you out on a high dose. I felt wiped out. Once I was on a maintenance dose, it was not that bad. Just be sure to drink plenty of water, as it is hard on your kidneys. Again everyone is different.

Good luck with your treatment!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Wed Sep 28, 2016, 07:00 PM
FrankW FrankW is offline
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Thank you Margaret for your feedback. Sounds like the early use of these drugs was just horrible. On the plus side you are still here 25-35 years later. Hope your quality of life is at least acceptable.
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Old Wed Sep 28, 2016, 07:05 PM
FrankW FrankW is offline
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Thank you very much Hopeful for sharing your experience. I pretty much got the same story with respect to the first day on AGT being nasty. I was not aware of just how high a fever one can run with this drug (I suspect doctors don't focus on that aspect much). All in all I would say your information gives me additional motivation to do the therapy. The other choice of course is death within a year or so most likely due to infection.
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Old Thu Sep 29, 2016, 09:09 AM
Margaret W Margaret W is offline
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Quote:
Originally Posted by FrankW View Post
Thank you Margaret for your feedback. Sounds like the early use of these drugs was just horrible. On the plus side you are still here 25-35 years later. Hope your quality of life is at least acceptable.
It is, yes, acceptable. Thanks! My son was in his early teens when I had the ATG and a nurse commented to me that at least, he was old enough that after I passed, he would remember me. Well, he's in his early forties now and got his Ph.D. at 25... I'm mostly in pain, but I can live with it for the time being. One day at a time; no bitterness. I am what "growing old with moderate to severe aplastic anemia" looks like. I pray, though, that more who visit here will be CURED, not grow old with the disease!!!

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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  #7  
Old Thu Sep 29, 2016, 11:05 PM
Hopeful Hopeful is offline
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Your story is inspirational, Margaret! Have you only had ATG one time (which was kind-of-like 4 times all at once)? Have you been off cyclosporine for most of the time? Stay strong!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #8  
Old Fri Sep 30, 2016, 10:59 AM
Margaret W Margaret W is offline
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Originally Posted by Hopeful View Post
Your story is inspirational, Margaret! Have you only had ATG one time (which was kind-of-like 4 times all at once)? Have you been off cyclosporine for most of the time? Stay strong!
Yes, Hopeful - ATG only once, 29 years ago at this time of year. I've never had cyclosporine at all; my treatment predates the use of it.

Thanks so much for your kind words... I do feel as though the current recommendations for rabbit ATG for me are way anti-climactic and I'm not *up* for it. Not right now, anyway. I've been fighting this for my whole life and I'm very, very tired. We'll see.

Blessings to you and everyone else here!

Margaret
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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