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Old Fri Nov 13, 2009, 01:17 AM
Gloria J Gloria J is offline
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Join Date: Sep 2009
Location: New Jersey
Posts: 53
Hi Fly Guy,

I received Horse ATG at NIH in April 2008. My counts were quite low just before I was admitted (.64 ANC, 7.3 Hgb, 9K Platelets), and I was given platelets and PRBC before the ATG. I had a PICC line installed, and it made everything very easy - infusions, meds, blood draws at five in the AM! I was very lucky - the first ATG infusion was just a little rocky - shakes and chills were relieved by IV Demerol. I slept through the rest of them. Don't hesitate to tell your nurse if you're feeling unwell during the infusion - they have all sorts of tricks up their sleeves to help you with symptoms.

Concurrently, I was taking Cyclosporine, Prednisone (to ward off serum sickness symptoms), an anti-viral med, an anti-nausea med (taking thirty pills a day did not suit my stomach!) a blood pressure med and Magnesium (since the Cyclo tends to lower magnesium and raise blood pressure). I also had breathing treatments monthly (Pentamadine) to ward off a particular type of pneumonia. The folks at NIH are angels, and made sure I was given everything I needed to be comfortable.

I was also lucky enough not to get any serum sickness symptoms at all, so I was weaned off the Prdenisone fairly quickly. Most of the meds I eventually stopped, although I still take Cyclo, a blood pressure med, and magnesium. I'm slowly being weaned off the Cyclo.

My counts improved only after about 15 months. At one year post-ATG, I was still being transfused about every 8 weeks. But June 2009 was my last transfusion, and these days my counts run - high 9s - Hgb, mid 2s - WBC, and 30Ks - platelets. Not spectacular, but I feel really well, and most of the time I'm not neutropenic.

It seems everyone has a different experience, not only during the ATG infusions, but afterward in terms of response. My response was quite late and I was offered re-treatment at one-year post-ATG, and chose to let the summer go by. Am I glad now that I did!

Expect to stay in the hospital at least ten-fourteen days, so bring lots to keep you occupied - books/crosswords/etc. Keep in touch with friends and family, they will help the most. I kept in touch by email, and that contact meant so much to me.

Good luck next week, and let us know how it goes!
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Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
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