Graft versus Host flare and continued steroid taper (Part 31)


I think this post illustrates just what a knife edge people with chronic Graft versus Host Disease - and who are trying to come off their steroids - are really on.

This is a video of me on 10mg a day. If it wasn't for the sted face I would happily stick now.

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However, after two days of dropping down to 7.5mg this happened to my back...



It was really bad. My skin felt hot all the time and it was starting to get itchy. I hammered it with steroid creams and moisturisers but it didn't seem to be shifting.

I even used "Udderly Smooth" which turns out is actually a real product! Thanks for that suggestion.

The flare also seemed to make me feel really tired.

I've always been able to keep my spirits up but when this happened I just felt crushed. I thought we had come as far as possible and I would have to accept looking like this for the rest of my life.

It wouldn't be so bad but every time I see myself it's a reminder of everything that's happened to me and a reminder that I am still ill.

Mercifully two days later it was better.

It was completely back to normal.

This condition is so strange. Now I just want to try 5mg and hope for the best.


Hi Adrian

Good luck with the interview soon - It will work out just the way its meant to. :)

That rash looks very irritating, to say the least and I hope that a further taper down to 5mg goes smoothly.

I look at you in those videos and I see a very courageous, and funny, young man and I sincerely wish that your face gets less bloated really soon. You know that everyone else is probably used to it by now, but its like trying to tell a woman who feels overweight that she is not fat...... those words just don't work. So I hope that the 5mg "does it" for both the GVHD and your face.
Did I see a difference in the puffiness from the previous video to this one? Looks like it :)

Have a great weekend
love and light
Steven's mom

Morning Annie - thanks a lot for that. It's strange that after everything people like me have been through it should be a simple issue of vanity that is currently the most worrying. I suppose that is perhaps a good sign too?
Thanks for the comment about the face deflation. People do say it's improving but when you're carting it around each day it's hard to tell.

How's Steven?

Best wishes,

Ouch...that looks painful. I'm glad that it went away quickly, and good luck with the next taper.

I'm sure that it must be depressing and disconcerting to look at yourself and see someone "different", but as someone who's only seen you through videos, the sted face isn't off-putting. If I walked by you on the street I don't think I'd even notice. Small comfort, I know, but at least you're not scaring dogs and small children.

Hang in there...we're sending you our best thoughts. And I think that it's a pretty good sign that you can worry about vanity :-)

Hello Adrian, sorry to hear that the rash was back when the dose was dropped. Thankful its a bit better now. Hope you, Poppy and the family have a nice easter.. All the best Dawn xxx

Morning back to you Adrian
Yes, I think that the vanity issue is definately a great sign :-)But I still hope it's not going to be an issue for you too much longer.

I have to admit that now when I see someone with a 'sted face' or a chemo bald head, I see courage. Courage, determination, strength and perseverance. But thats easy for me to say - I don't have those - just the extra 'hip handles' :-)

Steven is doing great, thanks. I think I worry more about him than he does - natural, I guess. His next pcr is coming up soon, but we are all getting much better at the waiting game. So all is well on this side of the pond, and warming up too - thankfully - Steven is cold much of the time and winter makes it much worse, so summer is very welcome :-)
take care

Jen- Thanks for the comment. Really pleased it's come back under control and it's still good now. I think you're right that it can only be a good sign that my appearance is currently my number one concern!

Dawn - Happy Easter to you and your family too.

You know you're always gorgeous to me - I just can't wait for you to get rid of the damn hat!
Hope you had a cool Easter with the folks - wish I could have been there. But see you soon, Hxx

Hi Adrian

You look great.
The taper is working well really and your reaction to it is soon under control - all good stuff.
Good results yesterday! Crewe are on a roll and Forest aren`t doing too badly.
Do you remember that calendar I was always on about? It has raised nearly 4,000 pounds ( my pound sign does not work!) which has been fantastic.The next event I`m getting involved in is an evening in June following my daughter`s 21st party (she donated her stem cells to her brother twice over)-we`re just beginning to make arrangements for it so will keep you posted.Also, we`ve joined South Cheshire LRF branch as we both felt we wanted to put something back for all the dedicated care Will received - until you`re involved with something like this, you don`t appreciate the tremendous work being done.

Wishing you and your family a Happy Easter.

Take Care

You mean you doubted the existence of an udder dimension?! (Flounces off)
I hope it helped.
Nice hourglass figure you've got there ;D

Adrian, I am so glad that the painful skin rash only lasted a couple days. I pray that your taper to 5mg will be successful. You are handsome either way and I can tell from all your comments how much you mean to all your family and friends. Thanks for sharing your experiences, it's so helpful to others. Keep up the courage!

Hey Adrian,
Thought I'd pop by and say Happy Easter, see how things were going. I'm glad the rash has gone away! I've got a rash all over my body at the moment, but it's not painful so it's really more of a vanity issue with me :D
I had a bit of a flare up of gvh last week which put me back in hospital overnight, but that wasn't much compared to the dramatic weekend of easter which involved an air ambulance to get me back to Melbourne, lol. I'd gone camping in NSW and an infection decided to hit me hard and fast. Everything's alright now, I'm just in hospital for a few more days. But because I'd been on such a good run I didn't realise how quickly things could get quite bad.
I hope that the tapering down to 5mg goes smoothly, and that everything else is going well!

About this Entry

This page contains a single entry by Adrian Sudbury published on March 21, 2008 2:58 PM.

No pictures of my arse this week and can you help with a little dilemma? (Part 30) was the previous entry in this blog.

The Punto is dead - long live the Vectra. Plus 5mg of steds a day and a more serious flare (Part 32) is the next entry in this blog.

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