Skin GVHD: How to spot and tips to manage

Posted May 14th, 2013 by Be The Match and filed in Patient Stories
Show Content

Dr. Stephanie LeeGraft-versus-host disease (or GVHD) of the skin is a reality for many transplant recipients. As a common side effect of transplant, it can affect many parts of the body. Do you know how to spot skin GVHD? Do you need advice for coping with the ongoing management of GVHD? Dr. Stephanie Lee and Everett, a  transplant recipient, offer insights and advice to help.

What you should do once a month
Whether or not you’re currently experiencing GVHD symptoms, it’s always important to look for changes.  “The sooner we can treat your symptoms, the better. We want you healthy,” says Dr. Stephanie Lee, Professor of Medicine at Fred Hutchinson Cancer Research Center.

“Once a month, stand naked in front of a mirror and look at your body. Feel your skin. Look for changes. You know your body better than anyone else,” she says.  “If you notice anything unusual, tell your doctor right away.  Don’t ignore early symptoms of skin GVHD, which can include: a rash, itching, thickness, tightening, burning (in rare cases), or problems moving joints.

When it just won’t go away
Everett has been managing chronic GVHD of the skin for the past ten years. While his GVHD has not been severe, it’s certainly been an ongoing challenge. He experienced a defining moment many years ago with his doctor. “After a frustrating episode with my GVHD, I asked if she could just fix it and she said, ‘No. You have this.’ That’s when I really understood that this is something I would have to manage for life.”

Everett, transplant recipientEverett explains that the appearance of his GVHD— loss of pigment (dark and light lesions) on his face, legs and feet—can be uncomfortable at times. He works in sales and often has face-to-face interactions with clients. “It can be an issue,” he says, “People can tell something is going on.”

Scenarios like this can be difficult, but Everett says, “I’m grateful that I have the type of personality that allows me to stay positive and not sweat the small stuff.” He encourages others to have a positive attitude and to work closely with their doctor. “If you can, stay with the one doctor. And always follow doctor’s orders.” Through a referral from his transplant doctor, he’s had the same dermatologist through it all. This relationship has helped him learn to manage his GVHD in new ways, like trying different lotions and ointments prescribed by his doctor.

Dr. Lee agrees that GVHD can be challenging, but working together with your medical team and following precautions like avoiding the sun can make all the difference. “Patients can become frustrated with long-term management of GVHD— especially if treatments aren’t working as well as they once did. But don’t give up. Talk to you doctor and let us find what works best for you,” says Dr. Lee.

Team up with your doctor to find the best treatment
“Many treatments are available but it comes down to what works best for you. Sometimes that means trying different treatments regimens—what works one day may not work as well next month, so tell us how things are going and we can keep trying new things together,” Dr. Lee says. “If a treatment is not working well—don’t try to adjust it yourself, that could be dangerous. That’s what we’re here for—to help you stay healthy and feel better.”

Learn more tips to help prevent and manage GVHD or share your experience with GVHD below.

15 Responses to “Skin GVHD: How to spot and tips to manage”

  1. karla says:

    My husband (4 years out) has chronic skin GVHD that can be very trying. His problem is sun & heat sensitivity. We are very careful to do all we can to keep it at bay. The symptoms include sores that itch and weep, and come up quite easily. The doctor prescribes Clindamycin, but would love to find something that works better. Any ideas?

  2. Dennis Hough says:

    I’m almost 4 years out since my matched unrelated donor stem cell transplant. cGVHD of the skin showed up about six months after transplant. Just on my face and neck. We manage it with Photopheresis sessions every few weeks and two types of topical cream. Desonide Cream 60gm 0.05% & Elidel Cream 30gm 1%. Everywhere else my skin is good and flexible. It is my lungs that suffer the most from cGVHD with condition known as Bronchiolitis Obliterans Syndrome “BOS”. It makes me short of breath easily but I’m on Sigular pill and inhaled Symbcort. Life is still good and I’m happy just to be here.

    • Pithy yadav says:

      Can u suggest me some creams or treatment so that i can ride of this spots of gvhd…its gon 2 years of my gvhd…

  3. Peterina says:

    I think…or have suspicion that my boyfriend might be suffering of GVHD, he has extremely sensitive skin to almost every extreme condition and never really felt too much bothered by it. Don’t understand it.

  4. Anna says:

    Does anyone here have experience with/know someone with severe acute liver GVHD and outcome?

    Anna, Denmark

  5. Anna says:

    Forgot to write that tt is due to an allogen bone marrow transplant to fight CLL

  6. renee says:

    does anyone know about treating gvhd within the scalp for infants and will it cause him to never have hair?

  7. Gwendolyn Sellers says:

    I had an allogenic bone marrow transplant a year ago today. My brother was my donor. My CML is in complete remission. Now, I have HVGD. Initially, the involvement was of my liver, upper GI, mouth, and skin. All involvement, other than my skin,is back to normal. The blemishes are clearing — slowly. I will have my 1st appointment with a dermatologist next week. Does the face ever clear up?

  8. maria says:

    Hello everyone, I had a allogenic ul(unrelated transplant in 2009. Im in remission but I had severe GVHD on my face. My face is completely discolored with hyper and hypo pigmentation. I have started doing peels and creams but please please has anyones skin gone back to normal. I am grateful for my life, I just wish my face was better so I wouldnt have to hide behind makeup. Please if there are any stories please share.

    • Berta says:

      Maria, I am going through the same thing of skin pigmentation. I have seen a dermatologist in December of 2015. I was told that the skin was bacterial condition and to use Cetaphil. Fast forward April 2016, still and pigmentation still exists. I was introduced to Estee Lauder’s liquid foundation.It helps for women of color. I still have to go back and see this dermatologist again. I will keep you posted, Maria. Keep doing what you do and avoid harsh products.

    • Pithy yadav says:

      Does the spots of gvhd ever clear up…plse give me reply….i m very great full of my life but also want to normal…

    • Pithy yadav says:

      I really wants d same…i wish my skin becomes normal as before

  9. Berta says:

    P.S. Congratulations that you are in remission. God bless you. I’ll keep in touch here.

  10. Kimberly says:

    Hello everyone, I was diagnosed with AML and had a stem cell transplant , my brother was my donor. After a year and a half I was diagnosed with GvHD and started on oral meds, triderm cream and photophoresis weekly. Right now I am still taking all only changes are oral meds reduced and photophoresis is monthly at this point. I have dark pigmented skin under my breasts that show no signs of going away, the skin on my arms is thick as are the muscles and I have joint pain. I’m not complaining, this is just my life. My doctor informed me 9 months ago that it is cGvHD. My question is this: Is there anyone out there with cGvHD that still goes to work? I am an RN and I was told I will never work again. I feel better now than I have since diagnosed and I do realize my profession puts me at risk. I just wondered if anyone else works in the public with this disease. Thank you for any comments and God bless everyone!

  11. Kelly Del valle says:

    My son is 21. He is on Day 200 of an allogeneic stem cell transplant (unrelated donor match). The past two months he has been dealing with itching. No rash. Just itching. Hands and feet and sometimes skin around the body. Has anyone dealt with this particular GVHD symptom? If so, what helped you? I’m scared of him using steroids for a long period of time. We are aware he might have to deal with this forever, but making the symptoms bearable is what we are after. He needs sleep. Please help!

Leave a Reply