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Old Sun May 5, 2013, 09:05 PM
NLJabbari NLJabbari is offline
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Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Thank You Hopeful and Dfantle. Actually, I am aware that not all Cyclosporine is Bio-equivalent in that absorption rates differ. What I'm wondering or am curious about, is if there is something else in the mechanism of the different brands of Cyclosporine. It seems that there are some brands that I hadn't heard of before, that I seem to be hearing more often e.g. Tracolimus and a couple of others. Also, the "modified" brands vs "non-modified". To the best of my knowledge "modified" merely means the pills don't have that stinky skunk-like scent. Makes me wonder what is that smell and why have it at all??? There are brands that supposedly don't swell your gums and no excessive hair-growth. What exactly is happening to the body when the swelling occurs?

This makes me wonder if perhaps there are differences in how they work or not and we just don't know it? My son was initially on Gengraf and responded quite well. He was weened after a year and was off all meds for about 1.5 years when his numbers began to decline once again. Then his doctor put him on Sandimmune. I asked about this, but was never quite clear as to why Sandimmune vs Gengraf which we already knew he had done quite well with. At the time, they told me it was an Immunosuppresent and that I shouldn't worry about it, so I didn't. I just assumed that since "Kaiser" is an HMO, that was the ISD that was available.
Time went by and my son never quite was able to regain the numbers he once had (All within Normal Range). We went up and down for years (about 6 years) until he was in full relapse needing transfusions once again. As if that wasn't bad enough, he was also being transferred to "Adult Medicine" at this time, meaning "New Doctors".

Long story short, the new Dr. didn't work-out for us at all. So, we did further research and found a more experienced Dr.within our HMO who besides being a Hemo specialist also teaches at Stanford University. Within a couple of weeks and by switching CsA brands back to Gengraf; my son has not needed a transfusion and his numbers are slowly rising to where they hadn't been in years. Especially his platelets. They had not been in Normal Range since about 6 years ago! I don't want to cry Victory, but it sure does feel good! The fact that his new Dr. decided to merely switch brands vs opting for another round of ATG--makes me beg to ask, "Are all CsA's created Equal?"

Again, thanks for your input I really appreciate it and I hope I haven't confused anyone.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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