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Old Tue Jun 21, 2011, 02:10 PM
Karenish Karenish is offline
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Join Date: Feb 2011
Location: Stafford, United Kingdom
Posts: 100
immuno suppressive tx

Quote:
Originally Posted by Darija View Post
Hello, I'm a first time poster, and an Aplastic Anemia newbie.
I am sure you have seen many posts and threads on ATG treatments, etc.
But I had some more questions, in hopes I can get any opinions, answers, or advice from anyone!
I am 26 years old, and have been diagnosed with A.A. about a month ago.
My siblings were unfortunately not matches for being donors for transplant, so instead of waiting idly by, my doctors want me to start Immuno-Suppressive Therapy tomorrow. I have read about people's reactions (both good and bad), and know that everyone is different, I just don't know what to expect.
What is serum sickness? and does anyone know if ATG will cause any problems later on down the road? I am hesitant to pursue this treatment because I feel healthy and energetic now (despite my severely low blood counts), and I fear leaving this treatment will make me much more worse off, because I seem to feel fine now.
Does anyone have any tips or advice for a more pleasant hospital stay during treatment?
I would appreciate any feedback whatsoever,
thank youuuu!
My advice to anyone is, try not to get too hung up on the internet, there are lots of scary negative stuff which although can be informative, can also make you worry and get stressed! I am 51 no match and because of my age bone marrow transplant would be the very last option. So here in the UK rabbit is the first line they use (atg) - for me personally serum sickness was not a problem, I had the shakes the first night (bit like flu - but i was laughing at myself in the mirror because I couldnt stop my teeth chattering, the nurses got my temperature down with paracetomol, i then came out in a rash which they got rid of with piriton. Then nothing really but a couple of rashes over the fortnight and a stiff jaw, with odd aches here and there, but truly nothing remarkable as they say. Boredom is the main thing, so take in a laptop, knitting, adult colouring in, dvd's which make you laugh and fruit juice....water can get very boring when you are stuck in isolation for a few weeks. But not grapefruit, that apparently does not work well with cyclosporin. Once you have had the treatment try not to get hung up on your counts....its a roller coaster, I had to switch off to it all because really, they arent interested until the third to sixth month after you have received your last dose. I had mine beginning of march so I am now in my third month and waiting for them to climb so i can become transfusion free! You may achieve them sooner, you may not, but try and go with the flow and keep thinking positive. I find it comforting to know that everyone is absolutely different to the other, some on here dont have any improvement in counts until the 6th month and then they steadily climb over a period of 18 months, some achieve full counts within a month (lucky them). There are risks of course with all treatments, but I will let your doc go through these, and remember what is the alternative? It is relatively new this treatment, and the research will change as the years go on, AA is a chronic disease, not terminal!!! it can be treated, might be a bit inconvenient going for lots of blood tests and having the treatment, but again what would be the alternative. Remember even the consultants are not 100% sure with this disease they too are learning as the figures of people surviving longer than say 30 years ago. If you do read any research papers, check the date!!! I remember reading one saying that life expectancy was 2 - 5 years, and then saw the date of the paper was 1979!!! doh! other than that, treat yourself to fresh air when you can, and abide to the rules regarding what you can and cannot eat - and as soon as your counts come above critical (which mine now have) start to enjoy your life again, but take a bit more care with hand hygiene, your eyes are the easiest way to pick up an infection, so keep those hands clean all the time!!! good luck and you may get more tips by reading the ~AA section on here. If i have missed anything I am sure someone will pitch in. xxxx good luck xxx
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