Hi KMac,
Yes, I guess 2 out of 3 ain't bad
I should be glad that my son actually functions quite well at 8.3 He's only 19 y-o and has a whole lot more energy than I do...or at least it seems like it.
Some time ago, I read something about a program (based on Algorithms) where you plug in all the data that pertains to your AA case and it offers advice/feedback??? I'm not sure where to find this program, but I think a member on this site mentioned it. It sure would be nice if this actually existed and helped out with sorting things out. Perhaps it could answer or bring light to some of these confusing questions. I'll see if I can find that post and I'll share it if I actually come across it. You never know, it might help.
Re: Initial response post ATG. My son responded at around the 5-6 month mark. During this time, he was taking a couple of antibiotics (Oral Nystatin and Bactrim) as part of his post ATG meds. Two weeks prior to this response, I had noticed on the med literature that Bactrim/Septra "Could Cause AA!?" I told his doctor that I was uncomfortable knowing this and I wanted him off this med immediately. So, my son was taken off Bactrim/Septra and now gets a monthly dose of Pentamidine instead. Well, the reason I'm mentioning this is because after he was taken off the Bactrim, his counts began to rise! I'm really not sure if it was a coincidence or if indeed Bactrim was not a good option for him. The first line to respond were his platelets. They took off and he actually reached the 300's, the RBC were next and he reached 13.-, then the WBC. WBC stayed in the 3-4 range for quite a while (years), but than went into the 5-7 range and pretty much has stayed there.
Re: RBC Growth Factors--Not an option as his Retic and erytho, both have recently been tested and are in (Upper Range). It was discovered during his relapse BMB that he has a 20% PNH clone, but it hasn't changed as of yet and his LDH (LACTATE DEHYDROGENASE) is in the 300 range. Lots of baby red cells, but they're not making it into the bloodstream. His doctor said that they didn't find HGB in his urine either, so that's a good thing. Now we're just waiting...hoping this clone doesn't get any bigger...or worst. He should be getting another BMB this summer.
I often wonder if ALL Cyclosporine is created equal...hmmm??? My son was initially on Gengraf (Generic for Neoral). He did well on that and then was switched to Sandimmune. (Kaiser HMO) Now, his new doctor has put him back on Gengraf and thus far we're seeing positive changes. For one, he hasn't needed a blood-transfusion since switching. That's a biggie, since less transfusion is a good thing. Yes, seems like he's plateaued at 8.3 and we're okay with that for the time being.
Thus far he's tolerated CsA pretty well. No high blood-pressure and kidney function is fine. Very grateful for that...
I asked about your diagnosis vSAA vs SAA because, like you said vSAA might equal "initial" poor prognosis, but I recall reading that responders actually do better long-term and overall. I think it has something to do with the fact that if all 3 cell lines are affected at a common rate, all 3 cell lines should respond at a similar rate too and perhaps avoid this "Weird sort of holding pattern"
Sort of makes sense...
Indeed this is a very strange disease or disease(s) as some might say. I have a feeling deep within that better treatments and understanding of this disease are in the near future. There are those few that are even brave enough to turn away from CsA, ATG, etc...and opt for Alternative methods. Of course, they are very disciplined and follow strict guidelines. Unfortunately, my son isn't that disciplined. I spend my days badgering him, asking him to please drink his water, fruits, vegetables, no fried foods etc...sometimes I bug him!
So, a second round of ATG and what to do? I think your doctor has a very valid point and yet 2 cell lines doing really well makes you wonder if the 3rd is just lagging for a bit and perhaps even due to one of your antibiotics. I hope you find an answer and that someone will give you good advice.
Take care,