Thread: Need Help
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Old Thu Nov 13, 2014, 05:11 AM
Amz904 Amz904 is offline
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Join Date: Apr 2014
Location: Atlanta, GA
Posts: 13
Hi Missy,

Sorry to hear about your father! Im going to try to answer as much as I can from my personal experience. A quick note about me: i'm 22 and was diagnosed with VSAA Dec 2013 (ANC: 0.02, WBC: "less than 0.1") i had ATG Jan 2014 and was transfusion dependent until June 2014. Currently, my white count and hemoglobin are normal, platelets are still a little low hovering around 60) I also have been on Promacta for about 7 months.

Heres my experience with cyclosporine (for reference I'm around 120 pounds), I initially was on 150mg/day (which made my cyclosporine trough level around 150) but my creatinine began to slowly rise and after about three months my creatinine was 1.85. At that point my doctor reduced my cyclosporine to 100mg/day and my creatinine dropped to around 1.4 after about two weeks. My blood counts didn't show any real decline or anything, so he then dropped it down again to 50mg/day and I've been on that dose since May, and my creatinine has been back to normal and stays around 0.7. Decreasing my cyclosporine was pretty scary, since most experts say a high dose is necessary and that its better to let your kidneys suffer a bit. But my doctor seemed very confident in his decision and I was getting my blood checked twice a week, so i was being very closely monitored. His view on it was that in transplant situations its absolutely necessary to stay on high doses of cyclosporine and you can't lower it, however with AA, his patients have responded well with a lot lower doses. So i've been on 50mg/day since May and it's been working great for me (and for my kidneys!) Also at that time, I was possibly considering getting a bone marrow transplant, which also contributed to my doctor lowering my cyclosporine levels since having kidney failure would compromise the chance of a bone marrow transplant.

In regards to picc line vs port, I had a picc line in my chest. My first picc line was put in for my ATG treatment in January, but was removed after about a week due a blood infection. Its unsure whether it was due to an infected picc line or not, but protocol was to remove it. A month later I got another picc line to help with blood draws/transfusions and i had it for about 4 months until I stopped needing transfusions. It required weekly dressing changes and was SUPER difficult to shower in, and just a hassle in general. I honestly only chose a picc line over a port, because i was worried about the scaring a port would leave behind (i know, that should have been the least of my worries haha) but because of that i opted to deal with annoyance of a picc line. I also lived with my family, so it was easy to make my sister change my picc line dressing and inspect it whenever I needed so that aspect was easy. Although it was annoying to have, it made getting my blood drawn SO much easier, which is why i after my first picc line got removed, i still got another one put in. The month in between picc lines i remember dreading getting my blood drawn since they would poke me a million times, so a picc line or port definitely makes life easier when your transfusion dependent!!

One more thing to add about picc vs port, I noticed i began feeling a lot more active once my picc line was removed, obviously since my blood counts were doing better, but also because without it i could move around easier. i could actually try working out a little without the fear that my picc line dressing would come loose or move around too much. So since you mentioned your father is already so fatigued, maybe a port would be better so on days when he does muster up some energy he would be more likely to try walking around more if he had a port rather than a picc in my opinion.

In regards to promacta/atg side effects, I didn't have any real side effects from either. I had my atg transfused super slow, which may have helped. (I think most people get it over 4 days for 7-10 hours a day, i got mine over 4 days but for 20 hours each day) so it was way slower which may have helped limit the side effects. Im not sure which side effects in particular your doctors referring to with promacta, but like with any medicine its about weighing the pros and cons.

With the whole BMB thing, I think the experts recommend getting one done every 3 or 6 months for the first two years or something. However I only had one done back in December 2013 when I was diagnosed, in my doctors opinion he said my blood counts are a pretty good indicator of whats happening and because of my low platelets he didn't think it was completely necessary to have to go through one since I'm being monitored so closely with all my blood counts. I guess it all comes down to personal opinion, i was okay with not getting another one (after hearing some horror stories of biopsies going wrong haha) so I didn't push for it, but if it'll make your dad and you more comfortable to get another one then don't hesitate to ask your doctor!

Sorry this was so long haha, but i hope it helped
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