Matthew42,
When you say,
I repeat myself a lot because I just get very frustrated with everything, It's like no one really understands aplastic anemia very well. They understand blood cancer way better, even sickle cell anemia, or so it seems.
I really feel you here. This echoes a lot of how I am feeling with the whole situation as well. Even when I tried looking at the benign hematology division, nobody has interest in aplastic anemia. Most of them specialize in hemophilia or sickle cell anemia. They even have people with interest and expertise in PNH, TTP, porphyria, and cold agglutinin disease... but not aplastic anemia?
So I understand the frustration involved. For example last week my mother had a small jump in Hgb (8.2 --> 8.6) and the hematologist said it was likely due to the Aranesp... when my mother hasn't had the Aranesp shot in over 4 weeks?
I did eventually email Leigh Clark at the AAMDSIF if they knew any other hematologists in the area that might have AA experience, and surprisingly they mentioned a doctor who is in the same group as my mother's current hematologist. I told my mother so she can think on it, if it gets to the point where she feels she wants a second opinion. We are coming up on 5 months post-ATG now.
Of course, my other concern with the hematologist wanting to repeat the ATG right after 6 months is the state of hospitals right now. I don't know how this hospital in particular is doing, but many across the USA are experiencing massive staff shortages as well as re-surging COVID cases. During ATG treatment they were checking my mother's vitals every 30 minutes, and over 8+ hours that is a lot of time to be investing in a non-ICU patient.
Looks like we just have to keep riding it out and hope for the best. It's SO hard to not try and invest so much into every little number change. It's driving me really crazy.
Marlene,
I deeply appreciate your response and telling your experience with this disease and with cyclosporine especially. It's incredible how much more I learn here, just from talking to other patients who have been through it.
I know that my mother was initially started on (I think) 750mg of cyclosporine total a day when it was first introduced but was lowered pretty quickly until she left the hospital on 350mg. From what I can tell she is on a generic version of Neoral (modified cyclosporine) . During every blood draw (2x a week) they test the cyclosporine trough levels, so they usually try to have my mother come in early in the morning before taking the morning dose.
Over time they have knocked down the dose to about 250mg, leaving her with trough levels usually between 250 and 300. This equates to about 3mg/kg dose.
Now my mother's dose has been lowered to 200mg. The reason is that she had a later appointment, about 2-3 hours after taking the morning dose, and the cyclosporine levels were 700+. The hematologist didn't like that and had her skip both her evening dose and the following morning's dose to re-measure the cyclosporine and it was still at 200. While I am familiar with the trough level monitoring (C0) I am not really familiar with the C2 level's significance. 200mg is about 2mg/kg now. I don't know why she is suffering so much from the side effects.
With every single blood draw they do a comprehensive metabolic panel (includes liver enzymes, sodium, potassium, calcium, glucose, bili, creatinine, BUN, eGFR, etc) as well as magnesium and phosphorus, LDH and cyclosporine levels. So far the magnesium levels have always been well within range (between 1.9 to 2.1) and so has potassium. I don't know if supplementing the magnesium will help at all right now.
As for clotting factors, the only tests I can see are for INR, Activated PTT and Prothrombin time which have been normal. Are there others they should be testing too?
I appreciate all the advice and the willingness to let me infodump everything here, it all just kind of sits in my head anyway so writing it down helps.
Thank you all again, it really helps me feel so much less lonely and isolated in this
