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Old Mon Mar 26, 2012, 12:22 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by Gosia.P View Post
This is my first post.

BMB confirmed - I relapsed. It had also been found that PNH showed up - @ 2% right now - and screening to be repeated in 6 months ; also most likely due to horse ATG, partial deliton of chromosom 13 was found.*
This time we decided not to wait and go ahead with second ATG.*
*Had my second horse ATG course 2/27/12. I'm on cyclosporin 2x 150 and still on prednisone - yuck!
*This time around about 2 weeks after the treatment I started having a lot of pain in my joints (knees, ankles, wrists, occasionally - elbows), my energy level is very low, walking limited, running out of breath after 100 yards sloooooww walk. Looks like this time I will have no choice, but really take it easy and stay home longer.
*After the first round of ATG, despite low blood count my mobility and energy level was great! I went back to work part time after 5 weeks! Now its an opposite situation, and it frustrates me.
I know pacience is the clue...
Any wisdom or words of advise???
Good luck to all of us 🎈
Hi Gosia.P,

I've heard some doctors say that are more likely to give R-ATG after failed H-ATG because it is theorized that serum sickness will be amplified with another round of H-ATG. So, perhaps you are experiencing the amplified serum sickness??? Have you been tapering the prednisone or are they keeping you on a higher dose while you have the symptoms?

Here is an article that talks about a patient similar to you that responded well to another round of ATG. (The mention of CD55/CD59 expression in the article indicates PNH.)

http://www.ncbi.nlm.nih.gov/pubmed/15609687

I hope time heals you and that you also have a good response.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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