SVAA & Horse ATG+Cyclosporine

[prayingrbc]

Anyone have VSAA and treated with Horse ATG+Cyclosporine? My father was diagnosed a month ago and had ATG (5 days) initially and continues now with cyclosporine. Unfortunately now his levels are so low his has developed sepsis and pneumonia . It is difficult and frustrating to see his immune system so weak while waiting for positive results from the therapy that he comes

I am wondering if anyone else out there with SVAA has had ATG+cyclo and how long it took to see results, especially in WBC.

It has been only a month and I know it can take 3-6 months to see results (per the standard) however, with his weakened state that seems like a universe away.

Any stories would be greatly appreciated.

[marepeak]

My husband has a similar story, including the sepsis. We are now approaching six months post ATG, still on cyclosporine. Had a port put in last month to make the transfusions easier. His numbers seem to be improving a little, we see his hematologist in mid January. I understand how hard it is to go through this. We have been living very isolated from anyone except the doctor, lab and transfusion center. We need to keep him away from sick people and watch his diet. You need to keep a positive attitude. Let the treatment have time to work.

[prayingrbc]

Thank you Marepeak for the insight. It certainly gives us hope. If you don't mind, can I ask you what your husbands levels were generally throughout?

My father is only one month in thus far, but since diagnosis/treatment (5 days of initial atg with continued cyclosporine and neupegen) his blood counts have not exceeded: HB- 7.6, WBC -.8, PLTS - 29, despite multiple platelet and blood transfusions.

His initial levels when he came into the hospital were: HB - 4, WBC- 1.5, PLTS, 4.

Thank you again for sharing.

[Amz904]

Hey prayingrbc,

I know exactly how you feel. I was diagnosed with VSAA in December 2013, and received hATG+cyclosporine at the beginning of Jan 2014. At the end of January I also had sepsis and was in the ICU for two weeks followed by many, many random hospital stays with infections coming out of nowhere as well as appendicitis. The first few months were really difficult, and it was even worse getting my labs everyday and not seeing any real improvement. But don't get discouraged! You just need to keep reminding yourself that it is a slow process and just need to take it one day at a time.

I think I have posted this before, but I'l attach it again in case you didn't see it. Here's a chart I made of my counts from Feb-July 2014. I stopped adding to it since after july I was finally transfusion free and things have gone up hill ever since


WBC (range per month)
feb: >0.1-0.1
march: 0.2-0.4
april: 0.5-0.7
may: 0.8-1.1
june: 1.2-2.1
july: 2.2-2.9


ANC (what it was at the end of each month)
feb: 0.02
march: 0.10
april: 0.27
may: 0.59
june: 1.25
july: 1.74


RBC (units per month)
feb: 14
march: 8
april: 3
may: 2
june: 2
july: 0


Platelets (units per month)
feb: 9
march: 6
april: 5
may: 4
june: 0
july: 0

Good luck to you and your father!!

[prayingrbc]

Amz904
Thank you so very much for sharing your story and giving us hope! I am so happy for you. If you don't mind can I as your age? my father is 61. I know every case is different, but just wondering if you two are close in age at all.

Again, thank you so very much for sharing!

Best of luck to you and your continued health! Please feel free to keep in touch and update us about your continued journey!

Happy Healthy Holidays!