GVHD of the eyes: A patient’s experience, a doctor’s perspective

Posted November 1st, 2013 by Be The Match and filed in Patient Stories
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jennifer with captionIf you’ve noticed changes or are having trouble with your eyes, it could be caused by graft-versus-host-disease (GVHD), chemotherapy, or radiation to the head, all of which can affect tear production or interfere with the balance of oils and moisture that keeps eyes healthy and comfortable. Learn the warning signs of GVHD of the eyes, how one patient was successfully treated, and why she’s glad she didn’t ignore her symptoms.

Jennifer’s first symptoms
Transplant recipient Jennifer first experienced trouble with her eyes in 2000, about a year and a half after her transplant for severe aplastic anemia. “It started with feeling like I had dry eyes, so I just used artificial tears,” said Jennifer. “But over time, my eyes became more uncomfortable. It reached a point where I could not produce any tears and my eyes were bone dry.”

Know what to look for to start treatment early
“Approximately 60–80 percent of patients with chronic GVHD experience some problems with their eyes,” said transplant physician Stephanie Lee, M.D., MPH, of Fred Hutchinson Cancer Research Center. “Recognizing the symptoms is important to early treatment.”

Some of the more common symptoms of GVHD of the eyes include:
Dry, irritated eyes
Feeling gritty or painful
Tired eyes
Light sensitivity
Red eyes
Discharge
Difficulty opening
Itching
Burning
Blurred vision

Tell your doctor about changes
Be sure to discuss your eyes during follow-up exams. Early evaluation, diagnosis, and treatment are important to controlling symptoms and preventing permanent damage. “Let your transplant doctor know right away if you have problems with your eyes,” said Dr. Lee. “Your physician will examine your eyes to determine the cause and eliminate other possibilities, like infection.”

Explore different treatment options
Dry, irritated eyes are most often treated with eye drops. Many formulas are available, so you may need to try several to find what works best for you. “If you have trouble managing symptoms, or experience a change in your condition, ask your doctor about other treatment options,” said Dr. Lee. “For example, you might be prescribed eyes drops that contain medicine to weaken your new donor immune system (immunosuppressants), or be prescribed special contact lenses. Depending on your situation, you may be referred to an ophthalmologist with expertise in treating GVHD of the eyes.”

Jennifer’s treatment decision
For people with moderate to severe dry eyes, blocking tear drainage is another option. Each eye has two little openings called puncta that drain tears into the tear ducts. Partial or complete blockage using plugs or cauterization can block drainage of tears into the nose, making more tears available to the eyes.

“I had punctal plugs put in my lower tear ducts,” said Jennifer, “and after still having issues we did the upper ones, too. I went through several plugs and continued to use artificial tears. I also took fish oil to help with tear production. But I still felt like I constantly had something in my eye. It got to a point where it became unbearable. I wanted to constantly rub my eyes.”

Jennifer was on the verge of developing an ulcer that could ultimately lead to loss of vision.  She and her doctor decided to cauterize her lower tear ducts. “When I continued to have discomfort, we went ahead and did the upper ducts, too.  My only regret is that I didn’t do it sooner. I could have avoided a lot of pain. Since then I have felt much better. I can actually cry tears for the first time in years!”

Advice to patients experiencing GVHD of the eyes
Jennifer advises patients to pay attention to their eyes and not neglect them. “You can become desensitized to the pain until you’re almost numb to it. You might think your eyes are okay, but they could be worse than you think. And it’s not just the sensation; it can also affect your vision. I never needed glasses before my transplant, but now I wear them all the time and can’t really see anything far away.”

Jennifer also recommends using artificial tears religiously and talking to your doctor about taking fish oil to help with tear production. She says if you’re not getting relief, ask about what other treatments or accommodations are available. “Because of my light sensitivity, I was able to get a prescription for tinted car windows that were actually darker than would normally be allowed,” she said.

Dr. Lee tells transplant patients, “Be proactive about your care. If you’re not satisfied with the answers you receive, get a second opinion. Being a good self-advocate and taking action early can help prevent serious, permanent damage to your eyes, and speed recovery.”

Take action, learn more
Contact your doctor about any problems or changes with your eyes

  • Visit our Facebook group to share your experience and learn from others.

19 Responses to “GVHD of the eyes: A patient’s experience, a doctor’s perspective”

  1. Anil Kapuria says:

    I had peripheral blood stem cell transplant in May 2000, and developed GVHD of eyes in Nov 2004. By the time I went to seek treatment, my left eye had stopped producing all tears and right eye would produce only 5% tears. Plugs to block tear ducts did not work, Rastasis did not work either.

    Now my left eye has extremely blurry vision, and right is has 20/40. The eye drops I have used and worked for all these years do not work. I used OTC eye drop, Tears Naturale II w/polyquad, and would finish one 30mL bottle in one week to ten days. Unfortunately this does not work anymore. My eye doctor thinks PROSE, special contact lens may be the answer, unfortunately, UCSF is no longer taking new patients as the specialist who did it is leaving.

    Anyone who has any suggestion I would love at this stage.

    Thank you,
    Anil Kapuria

    • admin says:

      Hi Anil, we’re sorry to hear that your previous eye treatments aren’t working anymore. Our patient service coordinators are available to talk to you and help you. Email patientinfo@nmdp.org or call 1 (888) 999-6743. You can also visit the Patients Connect Facebook page to ask others how they are dealing with eye issues. Here is the link: http://www.facebook.com/BeTheMatchPatient.

    • Damien says:

      Hi Anil,

      I’m in the same situation as yourself. I found that these particular eyedrops work best for me, https://www.hpra.ie/img/uploaded/swedocuments/2134509.PPA1151_207_001.64ad19f9-6998-4b04-9c84-1e0791183dc4.000001Product%20Leaflet%20Approved.140704.pdf They come in single dose sachets and, importantly, are preservative free.

      Hope this helps.

      Yours,

      Damien.

    • Jeff Bailey says:

      I developed GVHD related dry eye after my CLL stem cell transplant.
      I wear Scleral lens. I still use Systaine and Thera Tears.
      My eyes are comfortable in the daytime with the lens in.
      I’ve worn the lens for 4 months. I am noticing a slight improvement with my corneas. They feel less “sandy” and sensitive at night. My sclera are more white with less visible blood vessels. I take a one a day mega multiple vitamin and 1000 mg fish oil a day. Be sure and keep your water intake up. I drink an average of 60 oz. in a 24 hour period. You can never underestimate the value of keeping your system flush with water. If your in Tampa, FL the University of South Florida, USF Eye Institute has a staff Doctor maned Edgar Espana. He is a surgeon and cornea specialist and has experience with transplant patients that develop dry eye syndrome.

    • Rick Zingsheim says:

      I ended up with Prose contacts. It helped tremendously until last year when I had a blood vessel burst in left eye. Now I keep getting a film over the lens where it makes everything blurry until I reclean it, and than that only lasts sometimes only an hour. Right eye is still great most of the time.

  2. Heather says:

    Hi I have gvhd in eyes I use artifial tears and perception eye drops all day long. I also have cater acts due to steriod use. I’m suppose to get cater act surgery next week what if it makes the gvhd worse? I can’t image a world without my site and already disabled due to other side effects

  3. Jennifer Lizardi says:

    Anil, If PROSE are not an option I would ask if cauterizing is an option for you. It honestly is the best thing I did for my eyes! I wish you the best of luck.

    Heather, I personally do not have any experience with cataracts. However my advice would be. You are your best advocate so just make sure you ask all the questions you can think of. If your unsure about something keep asking til you understand. Write down your questions. And ask your doctor about his experience and any outcome with. Other patients in similar situations. But also remember no one is the same. Good luck to you!

    • Chip says:

      My eyes are bad too. I was transplanted on 01/24/2011….GVHD started the same year. They wanted to do a procedure while I was awake. I said no way.

  4. Ivona says:

    Jennifer,please help me! Please give me your e-mail contact,i need your help,i have big problem with my eye after transplantation…please ! I`m from Macedonia.I want speak about doctor oftalmology… my e-mail is ivonapetkovska25@yahoo.com

  5. Denie Stewart says:

    I had a BMT in June, 2013. About 7 months ago my eyes became dry and have become horrible. Sometimes the dryness seems unbearable. I would love to know if Jennifer is still glad she had her upper and lower eye ducts cauterized. I would love to find out more about it. Did the contact lens help at all? That has been talked about as well. I was recently put on steroid eye drops and am very nervous about that and how it can cause cataracts. Plus it’s not helping. Was it a painful procedure?

  6. Alex says:

    I have experienced severe GVHD in the eyes and I have had cauterization, take fish oil, on restasis, and use similasan and naturale free eye drops.

    The one item which I strongly recommend is Air Shield 7eye by panoramix, they can be fitted for RX. They are very helpful to manage
    The chronic dryness.

    GVHD is chronic for me and I am constantly trying to improve the treatment and manage it. Hopefully my suggestion helps

    • Dean Hopkins says:

      I was transplanted in 2011 MDS, I have struggled with dry eyes since if not for my Scleral Lens I could not function.

  7. Alex says:

    http://www.7eye.com/AirShield/

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  9. Barbara Davis says:

    Hello everyone! Congratulations on your survivorship! I had a allogeneic stem cell transplant in April 2007. Eye difficulties started for me about a year after my transplant. I used all kinds of eye drops, artificial tears, and plugs in my tear ducts…none were very effective. I am a teacher and it got to the point that I had to wear sunglasses in class. Finally, I visited a doctor in Miami, FL and he cauterized the top and bottom tear ducts. What a blessing! Almost immediately, I felt relief! My eyes get dry sometimes, but nothing like before. I avoid ceiling fans and air conditioner vents. I also protect my eyes with good sunglasses. Inform your eye doctor if you have procedures planned for your eyes. That can exacerbate dry eye. Also, Bio True by Bausch + Lomb is GREAT for a nice, clean eye wash. Best wishes for health and long-term survivorship!

  10. Nick Perrotta says:

    Hi all,
    I had my first bit March ,2015. I developed gvhd of the eyessix months later. Had the same symptoms as many of you, severe dry eyes, burning, painfully in sunlight or watching tv. Been on fresh tears, restasis and acetylcystiene and plugs , with no real relief. Finaly I got lens’s from Boston sight and had immediate relief with minimum dryness. I highly recommend anyone with gvhd of the eyes to invest in these lenses as it will help greatly. Unfortunately I needed a second transplant in April so I was taken off my anti rejection mess in January. Since then zip have blurry vision in both eyes with or without the lenses. Lenses still great because without them I can’t keep my eyes open due to sensitivity.
    Has anyone had blurry vision and had any success with treatment.

    Thanks,
    Nick

  11. brent says:

    hi need advise on scleral lens
    I had bmt in oct 2015 and gvhd has affected eyes I have had
    scleral lens for about a month and still learning how to where them and how long I can wear them.
    how long can you wear them and how long of break do you need before you put them back in?
    I can go 12hrs sometimes but trying to extend that time spand due to my long days.
    any advise is welcomed.
    thanks brent

  12. Kay Smith says:

    My son (33 years old) had a BMT November 2018. He was just told that his vision test showed him to be legally blind. They are trying to rehydrate his eyes with gtts, and then in 2 weeks will re-evaluate. She told him there are contacts to try next, which actually supply the eye with vitamins, etc, and they will use these next. Does anyone have any experience with vision improving after the eye is better hydrated? Please contact me via email at: dennisandkay@aol.com

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