Rash not GvHD?

Hi Tessa, 

It could be tiny below-the-skin bleeds? Are your blood counts ok, especially platelets? Other than that, no real ideas especially if the staff can't think either.....

If you try the steroid cream, does it help? 

Hope it gets sorted out....

hugs xxx

Hi Tessa

I also had GVHD of the skin which was dealt with by light therapy. 

Since then my skin can have a bit of a mind of its own and sometimes be super sensitive to things. Some shampoos, body wash will bring me out in a rash even if it is unscented. I jumped in the pool on holiday and came out with red blotches all over my torso.. they went within 20 mins and thereafter when I went in the pool there was no reaction at all.. 

I don't know what your rash could be and as you have already done get the professionals to check it out.. however it may just be sensitivity and / or a mild reaction to something. Post transplant you just don't know what you may be allergic to! 

I know I am no longer allergic to penicillin but I do now suffer from hay fever!

Hope it clears up soon.

Hi Tessa, I also find my skin takes funny turns but I just use the creams I had for GvHD. How are you doing other wise?

Paul, that is very interesting with regards to penicillin. How did you/they find out this? I have been allergic all my life, now this would be an amazing unexpected benefit from having a SCT. I don't need my asthma inhalers now!!

Thanks for some interesting replies. My blood counts are good. My feeling is that it is an allergy, and interesting to hear others have had similar things. I have had mine a week. I was specifically told not to use the steroid cream on it. Today I washed my arms in Simple soap instead of shower gel. I think the blotches look fainter, though I'm still mystified why it should only affect two specific areas, in fact its mainly in the same places on both arms, mostly down the inside. Maybe the skin is thinner there.

Mike, to reply to how I am otherwise (thanks for asking), my nausea has nearly gone and my appetite is improving. I'm walking a bit further though still lacking confidence. I'm reading a bit more though can easily fall asleep after a few pages. Slow progress but progress.

Tessa

Ah Tessa, great that you are making progress. I still use reading a book as one of my ways to fall asleep at night, but it just take soooo long to get the book done ;)

"Don't wait until you've reached your goal to be proud of yourself. Be proud every step you take toward reaching that goal"

Hi Mike

As they wanted me on penicillin long term rather than septrin (which I was taking rather than a penicillin) they got me prick tested in the immunology department. Took about 3 hours. No reaction and been in penicillin since then. 

Thanks Paul, I had been on Septrin forever or feels like it. I have a VC with my team on Monday so expecting to come off a few more of the drugs if all is well. I was admitted for a week either side of Christmas last year with all sorts of infections and not having Penicillin in the arsenal has been a problem. Thanks

I've been told I will be on penicillin for life. That did worry me slightly - will it be less effective because I'm taking it all the time.

Tessa

Hi Tessa

Yes that is par for the course. They will then give you a different variety depending on what infection you pick up as they all have a particular penicillin to treat them. 

I also have an emergency supply of a n other type of penicillin so if I get a chest infection or such like combined with a temperature I can start the course immediately rather than wait to see the gp. (Makes travelling easier as well as takes the worry away).

Hi Tessa, 

Not necessarily! Depending on your spleen I guess, it might be that they've decided that's the best way for you (everyone is very individual) 

Daughter is off everything except Levothyroxine and an HRT. Her thyroid got hammered both by radiotherapy plus a trial which involved radioactive iodine. And the HRT since she was young at diagnosis and so much chemo that yes, now in need to protect heart and bones. 

If you get an infection they may 'up' your penicillin dose as I think if you are on for life it may well be a low-ish dose. They will most likely add a different broad spectrum antibiotic if you develop an illness that the penicillin didn't catch before it took hold. 

Hugs xxx