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GvHD skin problems

Hi, I was wondering if anyone else can give me some advice about sore skin resulting from GvHD? I am seven months post transplant, generally doing well but suffering from sore, waxy feeling skin due to GvHD. Annoyingly, my skin looks normal and fairly healthy, so the consultant doesn't seem too concerned about it. I have been given a mild steroid cream, but as my skin is sore all over I am going through endless tubes of the stuff each day and it doesn't seem to be having a huge effect. My skin hairs also keep falling out and I have recently lost my eyebrows, which didn't fall out during my chemo or transplant itself. Has anyone else had these problems post transplant? Does it eventually improve and can anyone offer advice to help in the meantime? Thank you! Tania


  • Hi Tania,

    I had skin GvHD which started about 4 months post transplant. I guess it affects people in different ways as mine resulted in very dry, itchy skin. This was all over my body and my face was particularly bad each morning, looking almost like it had a hard crust of dry skin over it. The worst part was the itchiness which was unbearable at times.

    For me with the skin being dry, the main source of relief was by using moisturizing creams such as 'Diprobase' and 'Zerobase' or lots of E45. In fact I got to the stage where I had a long soak in a bath with E45 bath oil (1-2 hours) every evening which moistened my skin enough to get some relief and help with getting to sleep.

    I had mild steroid creams which I used to apply and they started to work to a degree, combined with a high dose of Prednisolone (60mg) which made things better initially, but the oral steroids had a major disruption to my sleep. My consultant also prescribed 50/50 paraffin cream to use on my dry skin, but I didn't use this as it left me so greasy I felt like a deep fried chip!

    It's difficult to say whether this will help you as your skin sounds like it is greasy as opposed to dry like mine, but it's a case of trying various things and seeing what works for you.

    Ultimately the GvHD didn't go completely with the steroids alone, so at about 9 months post transplant I was referred for a treatment called Photophoresis. This involved being hooked up to a machine (similar the the cell collection machines) and processed my blood by separating out some of the problematic T cells which were then mixed with a UV sensitive special chemical and exposed to UV light. The treated cells were then put back into me. The principle is that this eventually reprogrammes the cells that are causing the GvHD and the symptoms finally reduce.

    The Photophoresis was a long and disruptive treatment that went on for another 18 months with treatments for 2 days a week every 2 weeks initially and spreading out to every 3 months towards the end. It's not a painful treatment and doesn't affect you physically but it is disruptive in terms of time as it is regular and each cycle of treatment takes 2-3 hours.

    Don't be alarmed by the GvHD as it is not something that everyone needs, or works for everyone and it is a big commitment on both parts, both due to the time for the patient, and the cost of the treatment. Hopefully your consultant will find an easier treatment that will get on top of the condition.

    I hope this helps but feel free to ask any other questions and I'll help as best I can, as will others no doubt as I'm not alone in having skin GvHD.

    All the best,

  • My husband always used Oilatum bath oil in his bath and it worked brilliantly. It is quite expensive to buy but you can get it on prescription . Hope this helps.
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