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Old Fri Feb 2, 2018, 12:33 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 174
Talking Prednisone tapered

Hello everyone,

My dead serious hematologist answered some of my questions at my blood check yesterday, and I was wondering if he was in his right mind.

For those who might have the same symptoms, but thought them too trivial to ask:
1. Q: I know I have GVHD skin, but I itch in places that do not have red spots. Why?
Answer: sometimes rashes and spots do not appear red in colour and cannot be seen (to the naked eye), it doesn't mean there is nothing there, they are there, so they itch. It's also winter, dry weather, so that helps irritate the skin (the itch) more. So use the steroid cream on the red spots/rashes and the itchy non-rash/spots too.

2. Q: Why is the roof of my mouth so dry, it's like cemented.
Answer: Not only the roof of your mouth, your whole inner cheeks and mouth, the sides too, are being stretched out by your moonface, caused by steroids. When your moonface deflates, you'll feel better.

3. Q: I go to the toilet at least 3 times a night, are my kidneys OK?creatinine 0.99(H) eGFR 46.6L
Answer: Your kidneys are fine, when we lower the meds, your kidneys won't have to work so hard anymore. Take sleeping pills.

There were many others including my liver, steroid cream etc. It helped that he answered all my questions.

Most of the answers came back to prednisone, the steroids that cure while causing havoc. The good news was that, since my GVHD skin is in check, prednisone has been tapered from 15mg down to 10mg. That's 2 pills instead of 3 pills. A BIG TAPER! Very happy, though anxious to see whether rashes or spots might bloom again, like Ray's case.

Sometimes I think I have it bad, but when I see photos of GVHD skin from others, in this case Ray's pg13, it gives me a reality check, that things could have been much worse for me. If Ray's skin could get better, then mine can. Actually, it's getting better now, there will be ups and downs, bumps on the way, but we will ride it out by the Grace of God. Thank you Ray. Hope Ibrutinib will get you to a good place with your CGVHD.

My numbers as of yesterday Feb 1st 2018
WBC: 8.2 (H) uh, oh maybe an infection?
RBC: 4.38
Hgb 13.9
Htc 44.2
Platelets 150(L)

Liver numbers high but slowly getting down there every week :
AST 85(H) from 143 in Dec
ALT 118 (H) from 244 in Dec

I guess with these blood counts I can manage that trans-pacific flight this Spring.

Lisa, glad to hear you are getting there, and what a wonderful way to celebrate the day, with a 3 year old to boost !!

Next appointment in 3 weeks time. Here's to hoping that I can still operate on prednisone tapered down during this period.

AZwife, I hope you read Bobspez's post. It sounds so similar, even though Bob is CMML and your husband is MDS.

Very cold now in Tokyo. The flu is rampart. I wear disposable masks every day all the time, even inside, even to bed. I take it off only to eat, drink, shower and brush my teeth.Overdoing much???

Take care everyone, keep warm and keep posting.
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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