New member of the relapse club

[KimO]

Well, it appears that Shauna is another relapse statistic. Thankfully the Dr. is restarting the cyclosporin before she hits transfusion levels and we have hope that this will be enough to at least stop the drops, if not turn around the situation. She was in remission for over 2 and a half years with normal counts and off cyclosporin since April of last year. Then her platelet level went from 150 to 92 then 75 and Hgb and white counts have dropped as well. I think the most telling stat though is that her lymphs now outnumber her neuts whereas since remission she has usually run close to 2 to 1 neuts to lymphs. Thank you to all who encouraged Paula on her husband's relapse as that has been encouraging to me as well.

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KimO - Mom to Shauna - SAA 10/07, ATG/Cyclo/Pred 12/07, off Cyclo 4/09, counts normal until relapse 8/10

[Laura]

So sorry to hear this. Hopefully by restarting the CSA the counts can recover. Keep us updated on how things are going. How old is your daughter.
Laura

[KimO]

Shauna is 22. She's back in Seattle to finish her bio degree at UW. She's got 2 quarters left from when she had her ATG during her sophomore year. Getting those quarters in is going to be a challenge with this new development but she's a pretty determined young lady. The plan is then to apply to nursing schools. Heaven knows she will make an awesome nurse! Fingers crossed that the return to a relatively high dose of cyclo doesn't cause any cognitive challenges -- the major itself is hard enough!

[Hawaii Bill]

Hi Kim,

FWIW, I relapsed from ATG treatment I had in 12/06, starting after the CsA taper, in June 2007. We stopped the taper at 75mg/day and did the watch and wait thing until June 2008, when I saw Dr Paquette at UCLA; my local doctor wanted me to undergo another round of ATG. Before ATG, I was getting 2 units of PRBC every 2 weeks, and platelets weekly. After the relapse, I was getting 2 units of PRBC every 2 months, and platelets when needed for procedures. At that time, my whites were around 2.5, ANC around 1.5, hgb in the low 8's, and platelets in the low 20's.

Dr Paquette upped my dose of CsA to 200mg twice a day. I had my last PRBC transfusion a month later, and by the end of the year, my whites were nearly normal, my hemoglobin was above 10, and my platelets were around 35.

Today my whites are 5, ANC is 2.5, hgb is 12, and platelets around 70. I have pretty much a normal life, with no symptoms.

So there is hope for a recovery using CsA alone...

HTH

Bill

[KimO]

Dear Bill,

Thank you so much for taking time to be an encouragement! The doctor was doing a little "guessing" today on an appropriate starting dosage and ended up with 300 mg twice a day. My guess is that may end up being a bit high, especially after hearing about your 200 mg 2x, but perhaps a little "shock and awe" strategy might not be a totally bad thing for this first week. They of course will check the trough level along with CBC and renal and hepatic panels weekly so we'll know right away if it's problematic. After the first ATG treatment they had her on 400 mg 2x a day and her liver rebelled almost immediately so we don't want a repeat of that at all. I know last time it took almost a month to get a good handle on the right dosage to keep the trough at an appropriate level.

[Hawaii Bill]

Wow, that's a big dosage! When I saw Dr Paquette, he said there was no established therapeutic dosage, but he mentioned 5 to 15mg per kilogram as a range. Based on my calculations, I weigh 113 kilograms. At the low end, my dosage would be 5 x 113 = 565 mg per day. And yet I only take 400mg per day. (That is why I would like to increase my dosage to try and bump up those pesky platelets before we start a taper, and Dr Paquette is not against the idea; the risk is creating a problem with my kidneys).

Your doctor may be putting too much emphasis on maintaining a certain trough level. What I have heard is that the trough is not that much of a guide in this process.