Skin GVHD: How to spot and tips to manage

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

28 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!

    • john miller says:

      I’ve never quit working, although I work from home most of the time. I travel for work about twice a month mostly for meetings but sometimes I’m in a “clinical” environment. Eyes and skin GVHD with joint pain. Contemplating Photophoresis. My life is not great. Was training for a Marathon when diagnosed with AML 2 and a half years ago. Received a donor transplant from EU in July 2015. GVHD was almost instant, 3 months post transplant. Maybe a Tele Nurse Position may be a good fit for you?

    • Tracie says:

      My husband had an allogeneic transplant in September. He developed GVHD 7 months later when they cleared him to return to work and started cutting his tacrolimus.It is affecting his liver, eyes, mouth, GI tract and skin. He has continued to work since onset. He works at a prison and has been working a gun tower so he is not in contact with inmates. They have not been able to get the GVHD under control yet. His liver enzymes are still elevated along with all the other symptoms.

  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!

    • Jenny says:

      Hi, I had a bone Marie transplant in Feb 2016, have has slit if itching, especially on back. Mayo clinic prescribed a cream called Trimamyacjn it worked a little. Really dried my skin. On my own I used Aquafor. Watch what type of laundry soap, use children recommended type. it seemed to help and not so drying. Cool rags really helped also for temporary relief. It seems to be much better now , just took time.

    • Sherry says:

      I have that now. 1.5 years out since Allo 100% match
      With sibling donor. Off all meds but had one bout of
      GVHD itching a few months back, is back now.
      Itches like crazy. Comes and goes. Gave me Cream to use. Works for a while. Maddening some times!!!! Retired but work at home as a consultant.

    • Rebecca says:

      My husband also deals with this intense itching from time to time. I recommend Udderly Smooth Extra Care 20. It was recommended to me for him during induction chemo and it has helped.

  12. Felicia says:

    Hi, everyone. I underwent my bone marrow transplant in 2004. I have been struggling with my GVHD for over ten years now. It has been improving over time, but not to where it is completely gone. Now I have scars and discoloration all over my body. I don’t mind it much, but sometimes I do notice people talking and it gets to me sometimes. My doctor at NIH and I have been trying to figure out any way to improve it even more, but as of now, there is nothing they can do. I am happily engaged now, but my fiance mom thinks that my GVHD is an issue. Can GVHD be transferred to the baby if I decide to get pregnant? Or is there any optional treatment out there to speed up the recovering time? Please help!

    • Chelsey says:

      Hi I had my stem cell transplant in 2009 unrelated Donor. I’ve had skin GVHD aince about 6 month’s out. I got pregnant in 2014 and had a healthy beautiful little girl in 2015! Your GVHD is NOT contagious you can tell your mother in law there is nothing to worry about when it comes to giving your child skin gvhd.

  13. Laura says:

    Hi kimberly, i know that you posted over a year ago, hopefully you will see this post. I am in remission from aml with the flt 3 mutation. My first transplant failed, but the second stuck. I am almost five years out, and still have gvhd symptoms. Joints are painful most all of the time and have itchy skin every now and then. I went back to work full time 15 months after. I work for ups, and i thank them everyday for being understanding and flexible throughout. I know that everyone is different, but it can be done!

  14. Cheryl Paige says:

    Hi. I had an allo marrow transplant. The original diagnosis seems to be in remission, but it is not an easy post transplant road, now just over 5 years long. I was diagnosed with GVHD confirmed by biopsy of skin and gut and remain on immune suppression. It took several years to get the right doses to keep symptoms under control. My skin is painful and itchy, and the discoloration and scarring make me very self conscious and necessitate long sleeves, long pants or skirts, and high collars, even is warmer weather. I was diagnosed with a genetic clotting disorder, suffered 2 arterial embolectomies and numerous other DVTs and PEs, now on lifetime Lovenox maintenance. Somehow, I contracted a MAC infection. After the recommended year of treatment with Mycobutin, Ethambutol, and Azithromycin, I attempted to stop the drugs. However, symptoms recurred, more severe than the initial outbreak, and so now continue on the meds, most likely for life. I’ve developed hypertension and hypothyroidism, requiring medication daily. Because of the prolonged prednisone therapy, I am osteoporotic with osteoencrosis of the hips and knees. I’ve had bilateral hip replacements, one chronically septic, with a third fracture of my right hip due to a fall. I’ve also experienced fractures of my lumbar spine, wrist, ribs, and toes. My daily med list is a long that costs a large portion of our budget. I’ve tried attending support groups, but didn’t find it very helpful since most of those in attendance weren’t dealing with the types of issues I was facing. Is there any one out there struggling with cGVHD and other post transplant issues like mine? I receive treatment at a major cancer center, am fortunate to have a supportive husband and family, and I’m grateful to my anonymous donor for his gift of marrow. But, I am also frustrated by the oncoming and ongoing struggles I face. Thank you for listening/reading……….and for the Be The Match resources. I appreciate you.

  15. Molly says:


    My dad is just about two months post his stem cell transplant; I was his donor. He got treated for AML. For the first month he showed no symptoms and was getting a lot better. The Doctor did a bone biopsy and the results were good. Ever since his transplant his feet (and only his feet) have been a dark, almost purpleish color. However, about a week ago he started showing other symptoms. He has had abnormally high amounts of potassium in his bloodstream – he just started a low potassium diet. In addition to this, he also started complaining of a slight burning sensation on his face. About 1 month and a 1/2 into his transplant he was started to gain more energy but his energy is once again decreasing. Has anyone else had these symptoms or know if they could be early signs of GVHD?

  16. Susan RN says:

    Hi; To those with this disease GOD bless you. I have a grandson with the severe GvHD. He has to have the photo is myserable most of the time. He is only 22. Is in a wheel chair.I dont understand why we have this? Surely there is a way to slow down t cells. Has anyone tried this angle? According to my research this is the problem too many T. Surely there is something that will get rid of them a medication? Food product. This seems to be the problem over production of T’s. So slow or rid the body of the extra ones. Just a thought suggestion. It seems we traded one cancer for another. Also, if the female donor is not a good candidate for the male why are they doing it. Are we not checking for better matches or are we just settling for the first one that comes along?

    • Rebecca says:

      SusanRN, this is EXACTLY what I have been trying to figure out! The questions around T-cells vs B-cells & the female to male donations. Hopefully one day they’ll figure these out. I feel like my husband is a guinea pig for future patients.

  17. Patti says:

    Has anyone ever added alternative with medical treatment for relief? Looking for my son. I am checking into Light Therapy (Lazer treatment). Just saw that the University of Chicago has a special Innovative light therapy.

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