Tips for managing GVHD of the mouth

Posted January 5th, 2016 by Be The Match and filed in Patient Stories
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Cindy1-smallShortly after her transplant for myelodysplastic syndrome (MDS) in 2014, Cindy noticed that her lips and mouth were getting dry. Soon after that, she started noticing ridges in her mouth. Both were classic signs of chronic graft-versus-host disease (GVHD) of the mouth.

Symptoms of GVHD of the mouth
“I have bumps on both sides of my mouth and the roof of my mouth, but those don’t bother me too much. My mouth and lips are so dry that eating can be difficult at times,” says Cindy.

For example, Cindy can’t eat meat, bread or thick pasta because she has trouble swallowing it.

“I don’t have enough saliva, so I can’t break down the food enough. My lips are also very dry and get tight and chapped. That can be painful,” she adds.

“There are many symptoms of chronic GVHD of the mouth, and those that Cindy experienced are quite common,” says Nathaniel S. Treister, DMD, DMSc, Chief of the Divisions of Oral Medicine and Dentistry at Brigham and Women’s Hospital and Dana-Farber Cancer Institute in Boston, Mass.

According to Dr. Treister, other common symptoms include:

  • White lacy changes and patches, redness, pain and sores inside the mouth
  • Sensitivity to acidic and spicy foods and drinks, or foods and drinks you can usually tolerate
  • Sensitivity to toothpaste
  • Difficulty opening the mouth

Diagnosing GVHD of the mouth
Chronic GVHD of the mouth happens when the donor’s cells attack the salivary (spit) glands and soft tissues in your mouth. Saliva helps you swallow your food and helps protect your teeth from decay. If the glands are destroyed or don’t work, you may get more cavities. When your soft tissues become inflamed, it can make normal activities, like eating, drinking and brushing your teeth, painful and challenging.

If you notice changes in your lips or mouth, let your transplant team or dentist know right away.

“GVHD of the mouth is one of the most common types of chronic GVHD. And, the mouth is often one of the first body systems impacted by GVHD. Treatments usually work better and can be less intense the earlier we start them,” Dr. Treister says.

Usually, your transplant team or dentist can make a diagnosis just by looking at the inside of your mouth.

Your transplant team may be able to manage your condition, however, having a dentist as part of your team is important. This is because GVHD of the mouth increases your risk for tooth decay.

Management and treatment
There are many options available to manage and treat GVHD of the mouth. Cindy found that sucking on sugar-free hard candy and drinking plenty of fluids helps her.

“I’m constantly sucking on candy, but I try to get sugar-free candy because I don’t want to get cavities. I always carry water with me, too,” she says.

To help with her dry lips, she applies moisturizers many times each day. “I’m picking dry skin from my lips all the time, so I do whatever I can to keep them moist,” Cindy shares.

Dr. Treister says many of his patients have found that chewing sugar-free gum can help stimulate the flow of saliva. Taking smaller bites and drinking fluids while eating can help if you have trouble swallowing.

Prescription topical immunosuppressant medicines for your mouth can also help reduce inflammation (redness and swelling), and make it easier to eat and drink.

“There are solutions that you swish and spit out. There are also gels and creams that can be applied to targeted areas of the mouth or dry lips. For people who have a lot of pain despite treatment, there are steroid injections that can be given directly into soft tissues in the mouth that are hurting to help ease that pain,” he says.

Cindy sees her dental team several times a year so they can keep a close eye on her oral health. It’s a practice Dr. Treister says is important for anyone, but especially someone who has chronic GVHD of the mouth.

“GVHD of the mouth significantly increases your risk of developing tooth decay. It’s important to see your dentist at least twice a year for regular dental cleaning and screening for cavities,” Dr. Treister says.

There is no way of knowing how long someone will need to be treated for GVHD of the mouth. But Dr. Treister says, “Because there are effective treatment options available, most patients will continue to have good oral health and a good quality of life as it relates to their mouth.”

For Cindy, managing GVHD of the mouth isn’t always easy, but she tries to focus on the positive.

“I’m fortunate that my GVHD has been relatively mild. During the frustrating times, I think back to what my life was like when I was going through treatment for MDS,” she says. “I’m thankful for the life I have today.”

For more information
If you’ve been diagnosed with GVHD of the mouth or would like to learn more, download Fast Facts: Chronic GVHD of the Mouth, developed by Be The Match® and the Chronic Graft-versus-Host Disease Consortium. The fact sheet offers information on how to ease symptoms of GVHD of the mouth, how it can be treated, how to keep your mouth and gums healthy, and when to call your doctor.

11 Responses to “Tips for managing GVHD of the mouth”

  1. Zenon Forosty says:

    I wish to have more info on the substance of this article

  2. Lisa says:

    What about other forms of GVHD? I’ve had different forms of GVHD since my transplant in 2009. At present it’s my muscle and a tightness in my skin. Particularly my legs. I would love to know if and how other patients have delt with this.

    • Be The Match says:

      Hi Lisa,

      Great question! You can learn more about other forms of GVHD and hear about other patient stories here: https://bethematch.org/For-Patients-and-Families/Life-after-transplant/Graft-versus-host-disease–GVHD-/

      Best wishes,
      Be The Match

    • David says:

      I had trouble with my legs as well. Far down the road from transplant – 2 years. What my md and I found was elevated Eosonophil levels. These are white blood cells that fight parasitic infection. Normal levels are <6%. Mine were fine in May 2015, in August and December they were at 17%. Walking and stretching will help, but I took a short course of pred and got it down to 2% in a few weeks.

  3. Bill says:

    I’ve had GVH of the skin, especially the legs, specifically my shins/ankles for several years. I’ve used a topical steroid on it as needed and it responds very well.
    Ironically, I’m schedule to see Dr Treister next week for what is probably GVH of the mouth.

  4. jill says:

    great article I have been having trouble swallowing food and just thought maybe I was eating to fast. I never had this problem before transplant. Thanks for the info

  5. Jackie says:

    Has anyone tried Neutrasal? As a BMT survivor and a dental hygienist I’m very interested to hear feedback. Thanks.

  6. Jane says:

    My daughter is one month after transplant and she is vomiting blood and stomach, chest pain. Could this be one of the symptoms of GVHD.

  7. Camille says:

    My husband has had gvhd of the skin for about 6 months. He is almost one year out after having a halo transplant. He has lots of debris and tissue in back of mouth, on tongue and in airways that are causing difficulty breathing. Was recently intubated… Could this be gvhd or the mouth???? They are going to biopsy tissue. Any information would be helpful

  8. Shantel says:

    I Had a BMT in 2014 & I’m wondering what I can do about my lips, because I suffered from GVHD of the mouth. I have color Pigmentation On my Lips. I Have & Light & dark spots all over my Lips. Any suggestions on how to get the color back on my Lips.?

  9. Jack says:

    Hi! I am also diagnosed with oral gvhd and i have prescribed gel and oral solutions to reduce the symptoms. So far I am fine but the only problem I have is about my diet. I don’t know what to eat. Can you plesse help me out on what diet shoul I follow? Do you know a well balances diet appropriate for my condition? Thank you very much!!

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