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#1
Sat Oct 19, 2013, 02:42 PM
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cys taper
I have been on cyclosporne since atg treatment in 2008.I was on 200mg and have recently been tapering to 100mg. My concern is platlets. They have been between 120 to 140. Since the taper they are down to 95. My question is this cause for concern,I am quite worried.
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#2
Sat Oct 19, 2013, 07:46 PM
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Because there are so few of us and everyone seems to be different I am not sure that anyone knows. I have met several people that are stable around 80. last month I was at 110 and this is my first month off cyclosporine totally. Hoping for stability but really don't know. Hopefully if your numbers continue to decrease they can put you back on cyclo and increase levels again. Good luck and prayers.
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Scott 51 yr SAA 3/2012. PTL 7, ANC 200. ATG finished 4/9/2012. 2/4/2013. TX independent:; PTL 133, ANC 3300, Hgb 13.4.
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#3
Sat Oct 19, 2013, 10:43 PM
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rschem,
You should consider Vitamin D3 drops, I was taking 2000 - 2500 IU's, every other day for a while, and it seemed to help... I tested borderline vitamin D deficient, just a couple of weeks ago (early October), but I've been taking it since August... My PLT's skyrocketed, but I've also been on Dacogen (Chemo, which no doubt affected my PLT's also, if not primarily)... Also there are a few threads on here regarding alternative remedies such as papaya leaves and extracts which are also supposed to help... Deficiencies appear to play a big role in MDS and anemeas in general (from what I've read).... Best of luck, and God Bless...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10  ; 5.5% blasts down to 3%, now 1% (post BMT)
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#4
Mon Oct 21, 2013, 01:28 AM
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Hi rschem,
I share your anxiety about declining platelets. I have been off cyclosporine for about 6 months now, and mine have been slowly trending down. My local doctor says he won't be worried until my platelets are down to 50k, but I don't want to be that low again! I am curious what other doctors' philosophies are.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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