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My hubby had a stem cell transplant in 2/3 this year. He has had one episode of GvHD which was treated with steroid tablets. He has gradually come of these and the GvHD had started to come back in the form of skin rash. He has been referred for Photopheresis to hopefully get control of it. Has anyone on here had this treatment and can give me advice/info on how it works, how long it takes/effectiveness etc. Many thanks Alison

Best Answer

  • Hi Alison, I'm Steve and I'm one of the community champions on the forum and I had ECP treatment for the same thing.

    I also had acute skin GvHD which showed up about 2-3 months after my transplant. I had dry flaky skin all over my body which was really itchy and uncomfortable and a red rash around my neck and on my hands in particular.I can still remember waking up each morning and the bed sheets would be covered in a powder of skin flakes and I'd have a crust of dry skin on my face. It is very uncomfortable and your husband has my sympathy.

    I was put on a high dose of steroids initially but whilst that reduced the effects slightly it didn't get rid, so I was referred for treatment in Nottingham, as there aren't many centres that give the treatment and that was the closest to me.

    The treatment involves being connected to a machine that I liken to dialysis. A large needle is inserted into a vein in your arm which draws blood out for processing in batches. The blood is centrifuged which separates the red cells from the white cells and produces what is called a 'buffy coat'. The buffy coat is retained in a bag and the remaining blood is returned to the body either through the same needle or through a cannula in the hand. The process repeats until enough buffy coat has been collected to be treated.

    A photosensitive agent called 8-methoxypsoralen is then added to the buffy coat which latches to the white cells causing the GvHD then the mixture passes through the machine and is exposed to UV light before being returned to the body the same way as the red cells previously. The process is supposed to kill the cells causing the problems and over the course of time it reduces the problem.

    It is a long process and in my case took around two years to resolve, but it did get rid of the GvHD! In total I think I had 22 cycles of treatment, each cycle being spread over two days which involved being hooked up to the machine, which took around 2-3 hours per day. For the initial 3 months this was every two weeks, then it started to reduce to every three weeks, monthly, bi-monthly, three months, four months, and eventually my last treatment was 6 months after the last. Take a book, or a tablet with a film on, or listen to music and have a sleep and the time passes quickly.

    You can see from this it is a big commitment in terms of time, but if it works it should get rid of the GvHD and your husbands quality of life will be dramatically improved. For me I got into a system, and arrnged so that my first session would be the last session on a Thursday afternoon, stay overnight in the patient hotel, and do the first session of the Friday morning. It was less disruptive to my time that way. Your hubby should start to see some improvement within the first three months which is an indication that the treatment is working.

    There aren't really any side effects from the treatment and most people tolerate it well. The only precautions are when he leaves the hospital each day to cover up exposed skin and wear sunglasses as the UV sensitive treatment will still be in his body for a couple of days so he needs to avoid exposure to sunlight.

    How is your husband coping generally with his GvHD? I know just how frustrating it can be but the good thing is that it will also be working to keep his original disease at bay.

    I've no doubt he's on steroids which will make sleeping difficult and he's probably got a cupboard full of lotions and creams. One tip I could offer is to have a good long soak in E45 bath oil which is brilliant for remoisturising the skin. I had a good soak each night for about 2 hours and it gave me enough relief to help me get to sleep. My skin would still be dry again by the morning but it did help a lot.

    I hope this has helped and please ask any other questions you may have. It probably seems quite daunting but if it can get rid of the GvHD and get him back to normal it is well worth the time taken. Mine has gone completely and my quality of life is as good as it has ever been.

    All the best,



  • Hi Steve. Thanks for your very informative reply! I appreciate you sharing too about your skin. Hubbys was the same. I don't think I've seen anyone shed so much. He had exactly the same thing as you and the steroids completely got shut of it. But it's about two weeks now since he stopped taking the steroids and the skin rash is back. Only mild at the moment but his doc doesn't want it getting to the stage it did last time hence the referral. I was worried at hospital when I spoke with the doctor but she reassured me, and you have echoed this, that it is a sign that his transplant is working. GvHD aside, he's doing really well but for both of us recovery is a slow and very frustrating process.
    Thanks again. Alison
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