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Old Fri Jan 5, 2018, 05:54 PM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 174
Wink New Year - new GVHD

Happy New Year everyone, and best wishes for a healthy year.

4th January 2018, saw my appointment with the doctor go fairly well.
Trying to be humble, but showing off my blood counts anyway:
wbc: 6.7
rbc 4.25
hgb 13.4
plts 134

You should have seen my counts pre-transplant this time last year, to know how I feel now.

BUT, (of course there is always a "but" in MDS) even though my liver numbers are getting better, red spots on my foot, leg, are spreading up my thigh, is a warning sign that GVHD is still rampart, switching from liver to skin!

Besides Heparinoid 0.3% spray and cream, I got Locoid 0.1% steroid cream, it's a lighter version of Antebate 0.05% steroid. Locoid can be used on the face, though hoping these red spots will spare my moonface.

Cherl, Lisa ! Thank you for the wonderful suggestions on treating constipation. Besides taking Magnesium, I ate prunes, even made prune muffins. Then chia seeds ! It worked. I think the chia seeds worked a bit too well, though
My fugu stomache has miraculously eased, what a relief.

The doctor stated that long use prednisone could create unwanted Diabetes and Osteoporois (SP) :Since GVHD skin is still being treated, my doctor has decided not to taper Prednisone this time, keeping the same amount of steroids, so my drug list now includes ALENDRONATE (Fosamax) to prevent bone erosion. Equa tablets to control diabetes.
My prednisone at present is 15mg daily, cyclosporine 25mg daily.

All in all, it was a "Besides the GVHD skin problem, you're doing fine" appointment, just avoid molds and colds and the next blood check will be in 2 weeks time. Will update.

My prayers and wishes for everyone on this forum, or reading in, the warmest hopeful New Year ever.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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