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Old Wed Feb 17, 2016, 07:48 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Prednisone is a great and terrible medication. After getting some GVHD I was on about 160 mg prednisone - quickly tapered to 50 - and then on fifty for a couple few weeks - gradually tapering - I'm now on alternating doses of 10/20 mg and the plan is to keep tapering as long as the gvhd is relatively under control.

When I was on 50 and a bit less - I was ravenously hungry all the time - particularly craved onion flavors potato chips - which was bad because my potassium was also high -

prednisone also made me diabetic (taking insulin) high blood pressure (on meds for that) and made my muscles wither - also bloated red face, which may be partly gvhd.

I took in the morning and slept best I could - sometimes taking ambient or ativan - Eventually I gave up, and just tried to enjoy the awake time - extra snack at night an a big cup of coffee and big breakfast somewhere between 4 and 6 am. I particularly enjoyed the quiet morning time and would listen to music, read and do email. Not altogether bad - sometimes I'd fall back asleep around 9.

As I taper I'm less hungry, gaining muscle, blood pressure under control and diabetes improving - I'm really looking forward to getting off the stuff.

I was on 10mg daily for a couple of years prior to my BMT - to treat an autoimmune skin condition probably associated with mds - but the side effects weren't nearly as bad as with the higher doses.

Hope you can taper as soon as possible and the side effects go away.

Al the best,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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