Scalp gvhd - Treatment

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Hi everyone, 

I'm currently 11 months post stem cell transplant (blood cord). I've had persistent gvhd, which has worsened recently due to a reduction of my prednisolone. Most of the skin gvhd is relieved with steroid creams but I was wondering if anyone had any advice or suggestions for my scalp, it's become really dry, itchy and really flakey. I'm at the point now where I can't wear dark coloured clothing because of how much it flakes. I've tried washing it daily, to leaving it longer in between washes and a few different products. I am due in a clinic again in a few weeks so will ask then as well, but if anyone has knows of anything. That could help, I would be very grateful! Thanks. 

  • Hi  and welcome across the our little corner of the Community.

    Skin GvHD is tricky to control especially on the scalp as you can’t cake it in moisturiser and get on with life.

    I have a rare skin Non Hodgkin’s Lymphoma (CTCL) first diagnosed back pain in 1999 and eventually had my first Allo SCT in June 2014 that failed within 6 months so had a second Allo SCT in Oct 2016….. skin GvHD hung about for a good 12 months after my second Allo then it just disappeared.…. but fortunately I did not have it in my scalp,

    When I was dealing with my CTCL for 14 years before my first Allo SCT at times I was going to bed with a cotton skull cap hat that I caked the inside with moisturiser and sleepy with it on…. Washing everything out in the shower the next morning before going to work……. I was doing this in and off for 14 years.

    My SCT team told me to work with my Dermatologist of many years to help control the GvHD…..  we used various steroid creams and some UV light treatments and that helped a lot but it just came ok over night……. and this is often the case.

    Bad skin GvHD can be treated with ECP, a treatment used for acute and chronic skin, liver and oral GvHD. It aims to destroy the white blood cells that cause GvHD by combining a medication called methoxypsoralen (8-MOP) with ultraviolet (UV) light.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike! Thanks for your reply! I might try the cotton skull cap method then! I know for now we're trying to avoid ecp due to the logistics. But recently, NHS wales agreed to fund Ruxolitnib so I'm just waiting to see if that works, I just have to wait to be off steroids to see if it will, the knly down side is, it seems I've become reliant on them, so when they try and take me off them, I flare up.

  • It’s a merry go round of treatments and I totally understand the logistics challenges as I live in Inverness but my SCT unit is in Glasgow so a 8-9 hr round trip drive….. we most likely have done it over 30 times over my two SCTs.

    It’s all about hydration bot using creams but also drinking lots of water. I hope you get some rest bite.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge