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#1
Tue Jun 21, 2011, 10:31 PM
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Started the Horse ATG 6/20!
Hey everyone I just wanted to let you all know I started the horse atg On monday 6/20 & I'm doing great.. Before they started the treatment the nurses came in and gave me pre-meds to prevent any reaction.. Tylenol,benedryl, & prednisone. I did well on the first treatment yesterday The transfusion was only 6 hours and today they bumped it up to 4 hours. The doctor said I will get the ATG for 4 days! I should go home sometime thursday if all goes well.. They started me on the cyclosporine yesterday I'm taking 200MG twice a day every 12 hours.. & they will test my level before I go home..
The doctor told me I will continue taking the prednisone for a month and then slowly taper me off to prevent getting serum sickness its also is a immune suppressent.. He said if the treatment is working my blood counts should be improving in a couple months... I'm hoping this treatment will stop my T-Cells attacking my red blood blood cells in my bone marrow, thats what the bone marrow biopsy showed!! I'll keep everyone posted on here.. If anything changes
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day! 
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#2
Wed Jun 22, 2011, 02:47 AM
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Lori,
Everything sounds right on target. That's the usual protocol. Sometimes patients have an allergic reaction to the first treatment because doctors didn't guess the right types or amounts of the pre-meds, so it's great that you sailed through. Keep up the good work!
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#3
Wed Jun 22, 2011, 01:33 PM
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Lori, I agree with Neil. Sounds like everything is going according to plan, and that you are doing well with it. So far so good, hope that continues!
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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#4
Fri Jun 24, 2011, 09:42 PM
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Home from the hospital..
I'm home from the hospital.. I go monday to see my oncologist to check my blood counts and cyclosporine level. I guess its normal for your blood counts to drop quickly when doing the treatment my blood work today before I went home showed my Hgb went up from 7.7 to 7.9, Wbc dropped to 4.0 and Platlets went down to 108. The nurses are saying that might not be accurate it could be diluted from the horse serum because I've been getting a lot of fluids the horse serum came in this big bag! and I got for 4 days.
I was wondering is it normal to feel tired from being on cyclosporine? I just feel run down after the treatment and being on the medicine I hope i start feeling better.. I also might need a transfusion next week if my Hgb is still low.
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day!
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#6
Fri Jun 24, 2011, 11:29 PM
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ATG knocked my socks off. A month and a half later and the cyclosporine is still tiring me out. Maybe I should blame it on my age instead!
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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#7
Sat Jun 25, 2011, 10:36 PM
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question!
I was wondering what I should do if I notice i'm getting sick?! My doctor prescribed me to take these 3 antibiotics If my ANC goes below 500. I'm worried if I get sick I cant fight the infection?
the pills he prescribed me were a Anti-fungle, anti-virus and anti-bacteria and i'm suppose to take those until my ANC goes up a little bit if it were ever to drop real low?
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day!
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#8
Sun Jun 26, 2011, 10:36 AM
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Lori,
It's good that your doctor wants to be prepared. If you get an infection, the drugs will do the fighting for you, since your immune system isn't at full strength. The most important thing to do if you notice you're getting sick is to get to the doctor promptly.
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