AA,PNH,MDS (My husband's story)

[wani w]

My husband was diagnosed with AA (mds and pnh riders) in Oct 2010. He started Horse ATG therapy in November after much to do with our insurance.
He has done relatively well and has been taking cyclosporine since the treatment. He is now into his cyclosporine taper about 6 wks and his labs have been fairly consistant to this point. His last blood draw was this past Fri. and the while most of his results were close to what they have been his platelets came back at 110,000 from 130,000 two weeks ago. I find myself wondering and worrying. I know he is really freaked out and I am trying to allay his fears. But, I don't know if this is normal. I told him not to worry unless he trends downword. This is really scary... he's been on cyclosporine for over a year and a half (which we all know has it's own harem of bad side effects) and to stay on is dangerous, now getting off may be worse. Any comments about the drop in platelets, etc. will be welcomed. For anyone who reads this and has gone through what we have and are, has my deepest sympathy. My side of the family is riddled with cancer, heart disease, and Alzheimer's... My husband has always been the pillar of health. (no colds, flu, anything) We used to know he'd be unfortunate enough (lol) to have to care of me in old age. We have taken care of both of our parents, our kids and grandkids, knowing that in retirement it would just be the two of us. He is 52 years old and I am 51. Retirement is still a long time off. It makes us both so sad.

[Hopeful]

Hi Wani W,

It is great that your husband had a strong response to the ATG!

I also am tapering cyclosporine. I get CBC's once a month. Sometimes my platelets will be 10-30k lower, but usually it will track a virus that I was fighting. My taper schedule is 25mg every 2-3 months **if** my platelets are stable. If they are down, I don't taper. What is your husband's taper schedule?

Try not to panic, but watch the month-to-month trends. Don't rush the taper! The marrow needs time to adjust to fighting things on its own.

[wani w]

Thanks for such a timely response. I guess I was wrong on the time frame for the beginning of Rob's taper. They began the taper in Jan. He was at 250mg and he has tapered down to 125mg at this point. His taper has been very slow. We have been comfortable with that part of it. The doc's were never able to stabilize his blood levels of the cyclosporine though, so his dosing changed weekly. Initially we wondered how they were even going to begin the taper. And, yes, his levels are still all over the board. This past blood draw was the first that we had seen such a great drop in his platelets. (all other values look pretty good) Hence, the "worry". His labs are drawn every 2 weeks and he sees the BMT clinic every 6 weeks. Their plan is to have him tapered off by the end of the year. I believe his taper is similars to yours in dosing. I just found this site and told him about it. He is looking forward to checking it out.

[Hopeful]

My doctors have a different approach in that they don't even look at my level of cyclosporine. (It is always low as my body metabolizes it fast.) Instead we used a "standard" dosage (before taper) of 4-5 mg/kg/day, based on my body weight in kg.

If your husband started his taper this January, he is tapering 25 mg/month, which some doctors would say is too fast.

If his counts continue to slip, all is not lost. Sometimes an increase in cyclosporine can turn things around.