New to the forum

Welcome
21

Hi Tom,
I am the nurse specialist in the patient services team. Just as an extra patients have said to me in the past that Coconut moisturising cream helps. Also have you taken an anti histamine for the itching? you can get them over the counter and non drowsy, if you haven’t already tried it. Obviously it wont treat the cause but it will help with symptoms.

I hope it all goes well on Friday.

Best wishes
Hayley

22

Hello everyone just a quick update,

The consultant last Friday upped my Steroid tablets from 30 to 40mg a day plus a strong anti-histamine (Fexofenadine Hyrochloride 120mg) and so far I have to say it seems to be easing.
I go back Friday week and they’ve said they will take a biopsy if it hasn’t started to get better so I’m hoping the tablets are doing their job.
I’ll keep you informed of the progress.
Thank you all for your replies it’s so nice to know everyone is looking after each other.

Tom

23

Hi everyone just a quick update have finally come off the steroids and the skin rash is easing all the time so now just plenty of moisturising cream. Am also now down to just taking four penicillin tablets a day.
Have also started playing walking football and enjoying every moment even though it takes a week to get over the aches and pains (but good aches and pains)
Thanks to everyone for their continued support to me and everyone else on the forum.

24

Hi Tom,

Thanks for the update. It sounds like you are making great progress! Please keep in touch, and if you need anything feel free to contact the patient services team and if we can help, we will.

Best Wishes,

Billie

25

Hi Tom, it’s good to hear from you and that’s good news. I hope the rash is getting more comfortable. The walking football will be good for you to build your fitness and stamina up and keep your fitness going without being too strenuous.

Am I right in thinking you’re just over a year post-transplant? It’s good to be off the medications isn’t it and you’ve done well to be off your immuno suppression despite your rash. Due to my GvHD I was on Ciclosporin for almost 2 years post transplant and only came off them after the GvHD had gone.

I’m also on the 4 penicillin tablets a day (when I remember to take them) and I think it’s common for transplant patients to be on them for the rest of their lives. Considering the number of tablets we’ve all taken during our treatment 4 a day is nothing I guess.

I hope things continue to go well and that the rash finally disappears soon.

All the best,

Steve

26

Thanks Billie and Steve,

My transplant was April 30th last year and I feel very fortunate so far that everything is going well (long may it continue)
As you say 4 tablets is nothing to the amount we were taking not so long ago.
I’ve had a few upsets just recently with feeling guilty that I’m doing ok whilst a few beautiful ladies I’ve met at clinic have unfortunately not done so well. I know these things happen but it still doesn’t stop me feeling Why Me.

Thanks for continued support.

Tom