I am on day +61. For a week or so I have had a very itchy face, and from yesterday, an itchy back, with a very obvious visible rash. At my clinic appointment yesterday the doctor confirmed that it is most likely GVHD. During the the evening and this morning the itching area expanded to cover my whole back and it became more severe. I have been using prescribed Betnovate cream as advised but the relief is very temporary.
I am concerned at how quickly it has got worse and would appreciate any thoughts or advice.
Interestingly, I have been on injections to boost my WBC count, and yesterday my neutrophils were at more than 10. Since GVHD results from the donor cells attacking the host, I was wondering if this sudden worsening is due to this high count.
Hi. As far as I believe and been led to believe by doctors. Your neutrafils only increase when your detects infection in your body so your body produces more to fight the infection.At the moment I can say that mine remain at about 5.1 as I am currently taking steroids which can reduce the neutrafils count a little. When the body detects that the infection risk has gone the body then can reduce the number of nuetrafils needed. It is possible you may have caught a cold or have a cut or something that has caused the neutrafils count to go higher which has caused also an immune response which is often a trigger of gvhd flare ups. I am about 19 months sct and am constantly learning. My first flare up of cgvhd was due to having my first covid and flu vaccine which created an immune response which triggered my gvhd I believe as it flared just after I had the vaccines and reading medical papers they agreed with my theory.
Your condition sounds very much like GvHD and is what I went through (probably about the same stage) so you have my full sympathy over how it feels. I also had dry flaky skin on my face and the dry skin eventually affected most of my body. It was really difficult to get relief from it. I got to the stage where, just to be able to get to sleep at night, I would have a long soak in the bath with E45 bath oil in it.
I was initially prescribed various lotions, including betnovate which was quite effective. Liquid paraffin cream was another, but I very rarely used it as it was so greasy I felt like a deep fried chip! I was also put on oral steroids (prednisolone) which had some effect, but I was eventually put onto ECP (Extra Corporeal Photophoresis) which is what ultimately cured my GvHD. It did take a long time to cure completely, but the steroids certainly helped to reduce the itchiness, and after a while things settled down to blotchy red skin around my neck and eyes.
Like you, mine did get worse quite quickly and seemed really severe. I would wake up in a morning and my face was covered with a crust of dry skin, and the bed sheets covered in a fine dust of skin flakes. It did feel really extreme but it was something I learned to cope with, albeit with some difficulty. The evening E45 baths definitely helped to moisturise my skin and made it comfortable enough to get to sleep each night but each morning the cycle started again and during the day I was continually mousturising with various creams.
I can't remember what effect the GvHD had on my counts. I never paid that much attention to my counts anyway but I do remember they used to fluctuate a little all the time. As long as the overall trend was upwards I was happy.
All I can say is hang in there. It does feel awful, but experiment with different ways of moisturising your skin so that it's tolerable. I'm sure your medical team will come up with a treatment that will deal with the effects initially and then something to treat the GvHD and hopefully get rid of it.
Please keep us updated.
Thank you very much for your replies and sharing your experiences.
It seems it's something I have to cope with for the moment, and I will try some of the things which have, at least partially, worked for you.
It takes a lot of willpower not to scratch!