Hi John,

My husband has had almost every version of gvhd, it started with gvhd of the gut which put him back in the hospital, since then he has had gvhd of the liver, skin, mouth and eyes. For him the gvhd of the gut was the most painful and of the eyes the most annoying. His dr advised that gvhd tends to work its way from the inside of your body out and can last up to 5 years after transplant. It's no picnic, but as his doctor has advised having gvhd can be a positive. It shows your transplant is working and can reduce your risk of a relapse. Steroids have worked well to resolve the issues for my husband. With the exception of an ongoing dry eye issue all other issues have cleared up

My husband passed the two year post transplant mark in January and is doing very well. He even stated to friends over the weekend that there are days he doesn't even think about leukemia. I would be sure to let your doctor know about your symptoms. I cannot stress enough that if gvhd is kicking up the sooner it's identified and treatment started the better. Steroid pills, eye drops and/or mouthwash can work wonders. My husband also always carries individual sterile eye drops to use throughout the day as needed.

Again I know gvhd is no fun, but with all you have endured and overcome, this too will pass with time.

Wishing you all the best,
Colleen

Hi there John. I'm rooting for all you recent SCT patients and think of you all the time. I am a week away from 39 months post transplant, have had chronic GVHD from almost the onset and still suffer from it. But it's not really "suffering", more like an annoyance. I have it primarily in the mouth with dry mouth, some minor sores that really don't hurt and some tooth decay with is a by product of dry mouth. I've had some on the skin and some say I still do but it's mild. I occasionally get dry eye. I was treated for a short time with prednisone but for quite some time now it's been just over the counter medication to deal with the symptoms. I took Biotene for the dry mouth but don't even both much with it any more, I just drink more water. I used a cortisone cream for a time for the skin but that cleared up quickly. The dry eye - I have some drops but rarely use them.

My doctor likes the fact that I have this little bit. I've made it this far so I guess it hasn't hurt, right? My sister was my donor so it can come on with a sibling donor as well as a MUD. I'm not sure that mild, stage 1 GVHD has a dire prognosis but many people succumb if it gets out of hand so doctors are on the lookout for it constantly and tend to keep on top of it. I hope it does indeed go away after a period of time but I'm not banking on anything - they told me my shingles pain would go away and here I am almost 2 years later still taking Neurontin for the pain at night. But like I said it's more of an annoyance.

What we sometimes forget is that this procedure is a miracle but the fact remains that our bodies were never meant to work with someone else's bone marrow. It makes sense there is going to be some kind of reaction. As long as it's manageable I would consider it a good thing.

Good luck and I'll continue to root for you guys.

Lou

Colleen and Lou,

I really appreciate you taking the time to write. It is good to hear that it isn't a death sentence if it does come on. Also very helpful to hear of the treatments and salves to whatever comes our way.

Lou, did your donor (sister) have babies prior?

Colleen, what dose do they have your husband on to combat the GVH?

V.r
John

Hi John. I passed 3 year mark in mid January. My cGVHD symptoms started about 3-4 months after transplant. First it was the skin, mostly just spots that eventually cleared or became very light. Second was dry mouth that caused many problems with type of foods that I could not eat (spicy, sweet, sour etc), than dry eyes followed. Dry eyes were a big issue for me, it was often painful, I had very high sunlight sensitivity, eyes almost constantly inflamed and hurting. With time I started to produce some saliva so my mouth got a bit better and now I can eat almost everything as long as I keep drinking plenty of water. My dentist was in shock how much he had to fix after docs let me see him. Lots of small cavities, often under gum lines, although I have been brushing and flossing even more than usual. Now this is also close to normal.
My eyes improved very slowly. I tried every type of eye drops I could get my hands on, including serum eye drops. None worked for me. At the end I have been fitted with custom scleral lenses and those finally let me function without endless application of eye drops.
Today my eyes a bit better. Still no tears, but less sensitive to bright light, my right eye functions without a lens with only eye drops, left one needs more protection, but I found that daily disposable moist soft lens works well and is more comfy than the scleral lens. This way I can replace the lens with a fresh one whenever needed. For eye drops I use only sterile saline solution. The best are small plastic ampules used for inhalators. My doc wrote me a prescription so I can buy couple boxes for a single co-payment. That's 200 of 3ml ampules. I go thru 3 or 4 of them each day.
My last symptom is chronic small airways obstruction. It showed up about 12 months after transplant. Perhaps it was there before but I had to do tests to get the Dx. Reading about it was quite scary and took some time for me to stop worrying about it too much.
I don't feel anything wrong with my lungs unless I need to do something strenuous, like swimming or running. Than I run out of breath very quickly.
I learned to live with it like I do with my dry eyes. I'm about as active as I was before, just that I pace myself when necessary, wear special goggles when doing water sports, carry water bottles and eye drops everywhere, use tons of lotion, lots of sunscreen, etc, etc. I may not skydive ever again but who knows. Not long ago I was not sure I'd be doing anything fun again

Hello,

For the gvhd of the skin my husband used a prescription skin cream which was a topical steroid, for the gvhd of the gut and liver they started him I believe at well over 100mg of the steroid pills, they were 8mg pills then as he improved they would wean him off slowly over months. You cannot stop steroids quickly. For the gvhd of the mouth it was a prescription steroid mouth wash, he was not on that for very long and finally for the gvhd of the eyes it was prescription steroid eye drops. He used those every night before bed and then the individual sterilized eye drops during the day as needed for dry eyes. He is off all steroids now, but still needs the sterilized eye drops throughout the day.

We would just treat one gvhd bout at a time as each one popped up, kind of like the game whack-a-mole.lol. Each was just a step on the road to recovery. No fun I know and I am so sorry for all you are going through. Keep your doctor looped in to any symptoms and I am confident they will see you through any gvhd issues too.

Here to help if you have any additional questions.
Colleen

Hi again John. Yes, my sister has four children and had them well prior to serving as my donor. I've heard that there is an association with women donors who have had children and sct success rates but I think the association is weak and I'm not sure if it's been researched adequately to conclude anything. I'm not sure if there is any association with GVHD.

Lou

Some chronic gvhd is actually a good sign, at least that's what I have been told all along. I'm told it is directly related to higher survival rates. I've had about every form also starting with skin, then gut, dry mouth and dry eyes. Like borist, my dentist was not happy with my teeth after I was approved to go see her. Cavities along the gum line, about 6 of them, and I had only had two cavities my whole life prior. I just had cataract surgery on both eyes, I guess another side effect to the transplant. The bright side is I'm still here to tell about it 27 months later. And most of it has subsided, with exception to the dry eyes.

Davej