Chronic GVHD ~ Let’s talk about it!

Posted by Lori, Volunteer Mentor @loribmt, Mar 18, 2021

Those of us who have received peripheral stem cell transplants (bone marrow transplants) know first hand what a rare and amazing gift it is to be given a second chance at life. But it can come with a few interesting challenges and adventures in the form of Chronic Graft Vs Host Disease (GvHD).

At this posting, in 3 months I’ll be 2 years post transplant. So far I’ve had two serious, but quickly controlled episodes of GvHD. I’m still on a very low dose of Tacrolimus (.5mg daily) for maintenance as a precaution. From routine blood draws there is indication of slight liver involvement from GvH and my kidneys aren’t delighted with continued meds to treat the liver. My awesome transplant doctor, who is very conservative in treatment, is monitoring everything and is not concerned. He feels we’ve struck a good balance right now and expects at some point for me to be fully off the Tacro. Not to jinx anything but right now I’m feeling healthy and energetic.

C-GVHD symptoms can range from mild to severe and affect every part of the body with side effects such as rashes, dry skin and eyes, joint pain, GI problems or organ damage. It’s routinely held in check with lotions, steroids and anti inflammatory medications.

What are your Chronic GVHD adventures and challenges?
What medications or treatments have worked for you?

Interested in more discussions like this? Go to the Transplants Support Group.

@edb1123

I have a question that maybe someone can answer. Has anyone had advice from a nutritionist on what foods to eat or to avoid that could reduce the occurrence of GVHD? Or is diet totally unrelated to GVHD? I have only had mild skin issues and high liver function test results, which they think were caused by GVHD, but I would like to avoid it as much as possible. 😊

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Hello! I’m a solid organ transplant recipient. So, I’m sure @loribmt and other stem cell recipients can offer you more specific advice to meet your needs. I know on my transplant team we have two excellent nutritionists who have always been very happy to answer my questions.

Also, I’m working with another transplant recipient on Connect to start a Cooking for Transplant Recipients Culinary Arts webinar series. We are hoping that both solid organ and stem cell transplant recipients will join. Here’s the link for more info-https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

I’ve been researching diet and meal plans/recipes to share with participants in the webinars. Last night I happened to be researching stem cell diet resources. I found a lot of resources just by doing a Google search. And, I did also research on diet tips for GVHD, as I know it is a huge concern. I’m putting together a resource list with hyperlinks which I’d be happy to share.

Diet and exercise are certainly key to helping become and stay healthy following our transplants.

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@athenalee

Hello! I’m a solid organ transplant recipient. So, I’m sure @loribmt and other stem cell recipients can offer you more specific advice to meet your needs. I know on my transplant team we have two excellent nutritionists who have always been very happy to answer my questions.

Also, I’m working with another transplant recipient on Connect to start a Cooking for Transplant Recipients Culinary Arts webinar series. We are hoping that both solid organ and stem cell transplant recipients will join. Here’s the link for more info-https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

I’ve been researching diet and meal plans/recipes to share with participants in the webinars. Last night I happened to be researching stem cell diet resources. I found a lot of resources just by doing a Google search. And, I did also research on diet tips for GVHD, as I know it is a huge concern. I’m putting together a resource list with hyperlinks which I’d be happy to share.

Diet and exercise are certainly key to helping become and stay healthy following our transplants.

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Thank you for providing this information. Please sign me up for the monthly Zoom calls. I would love to get your resource list related to diet tips for GVHD. Thanks again!

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@edb1123

I have a question that maybe someone can answer. Has anyone had advice from a nutritionist on what foods to eat or to avoid that could reduce the occurrence of GVHD? Or is diet totally unrelated to GVHD? I have only had mild skin issues and high liver function test results, which they think were caused by GVHD, but I would like to avoid it as much as possible. 😊

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I’m having stone-aged internet issues this week which is really impeding my responses and testing my patience! LOL You posed a really great question so I’m happy to see @athenalee pop in with answers because I was going to tag her into this conversation! She’s a guru when it comes to health and well-being of our bodies through foods in our diets!

A while back I discussed this with my transplant team. What can be done to avoid GvHD of the liver (and in general) The only GvHD I have right now is a slight indication of “potential” liver issues because of minor elevations in my liver function numbers, similar to yours.
A lot of our GvHD is simply hit and miss. It’s whatever our immune system decides needs fixing and starts these ‘little fires’ in our bodies that have to be stomped out with prednisone or other anti inflammatory meds. So whatever we can do to avoid inflammation is one proactive thing we can do to avoid getting those new cells all riled up…such as avoiding any illness, avoiding sun, toxins, etc.

There are some research discussions regarding Choline in the diet. It’s being studied for potential issues within the gut biome which can cause inflammation, which in turn may cause GvHD. But it’s not proven and most of these foods on the Choline list are more important to our overall health than any speculation.
They include eggs, fish, beef, soybeans, wheat germ, chicken, turkey, cruciferous veggies, almonds, dried beans, cottage cheese…you get the picture!

https://gvhdhub.com/medical-information/the-effect-of-choline-rich-diet-on-gvhd#:~:text=The%20study%20highlights%20the%20impact%20of%20diet%20on,and%20Th17%20cells%20activation%2C%20which%20stimulates%20GvHD%20progression.

So, the talk with my team focused more on what foods are GOOD for the liver rather than avoiding the Choline rich foods. And because some of the good foods contain choline, it’s really a matter of keeping a healthy body through diet, exercise and water intake.

There are liver specific foods which help promote the health of the organ.

Eating the Rainbow ~ fresh veggies and fruit filled with antioxidants
Oatmeal
Broccoli
Coffee
Green Tea
Water
Almonds-nuts
Spinach
Blueberries
Herbs & spices

AVOID
Fried foods
Too much sugar
Alcoholic beverages
Unhealthy snacks
Acetaminophen (on a daily basis)

https://liverfoundation.org/for-patients/about-the-liver/health-wellness/nutrition/
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@athenalee

Well, I did some research. There’s only been a couple of reported cases involving DNA oddities in crimes, which were due to stem cell transplant. A number of investigative medical journal articles on it though…warning criminal investigators of the potential. I bet Sir Conan Doyle would have been all over it if he was living today!

Here’s a link to an article about doctors studying how long it took for a man’s cells and DNA to change…even his sperm DNA changed to that of his donor! Think about the ramifications of that! https://www.nytimes.com/2019/12/07/us/dna-bone-marrow-transplant-crime-lab.html

When I first started taking ursodial it caused hair loss, but not nearly as bad as Tacrolimus. I adjusted and doesn’t seem to affect me…hopefully it works well for us both! Definitely trade offs and certainly life is unpleasant sometimes, but as you say, we wouldn’t be here today without our transplants!

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My husband and I read that article too! It came out within the first year of my transplant and had our eyebrows raising!! Haha. I wondered what my future would hold. Well, here I am 2 years out and nothing outward has happened. 😂. There are still so many unknowns!!

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I have had GVHD off and on for the last five years. I was following varied diets during this time, including vegetarian and then vegan. I don’t see a correlation between diet and GVHD flair ups. We have a new immune system that is doing its own thing. No rhyme or reason most of the time. I personally focus on healthy diet and use whatever meds my oncologist prescribed for GVHD.

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@alive

I have had GVHD off and on for the last five years. I was following varied diets during this time, including vegetarian and then vegan. I don’t see a correlation between diet and GVHD flair ups. We have a new immune system that is doing its own thing. No rhyme or reason most of the time. I personally focus on healthy diet and use whatever meds my oncologist prescribed for GVHD.

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Thank you for this information about what you’ve discovered between the diet and GvHD! I really couldn’t correlate anything either from my diet. I try to do everything right. Though if I do cheat and have some Sun Chips, I find the salt irritates my tongue which never happened before.
But the other GvHD issues are so capricious, they’re obviously left to the whims of our new immune systems.
In a previous post you mentioned recently having scleroderma which is new for you. Do you mind sharing where this is occurring? Does it have anything to do with sun exposure?

I’m 2 weeks from being totally off Tacro and then my other meds so I’m concerned that I’ve been protected from some GvHD issues that might arise now that I’m going to be off. I’m always cautious in the sun but am curious as to skin issues and how they begin.

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@loribmt

Thank you for this information about what you’ve discovered between the diet and GvHD! I really couldn’t correlate anything either from my diet. I try to do everything right. Though if I do cheat and have some Sun Chips, I find the salt irritates my tongue which never happened before.
But the other GvHD issues are so capricious, they’re obviously left to the whims of our new immune systems.
In a previous post you mentioned recently having scleroderma which is new for you. Do you mind sharing where this is occurring? Does it have anything to do with sun exposure?

I’m 2 weeks from being totally off Tacro and then my other meds so I’m concerned that I’ve been protected from some GvHD issues that might arise now that I’m going to be off. I’m always cautious in the sun but am curious as to skin issues and how they begin.

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My skin GVHD flaired up after my first Covid vaccination in January. I don’t think it’s related to sun exposure in my case, since I am rarely outside in the sun, even though I live in Arizona. I have scleroderma on my stomach, legs and arms. Hoping to start on Jakafi in two weeks. I understand that medication works well for skin GVHD most of the time. If that doesn’t work, my doctor will put me on Rezurock.

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@alive

My skin GVHD flaired up after my first Covid vaccination in January. I don’t think it’s related to sun exposure in my case, since I am rarely outside in the sun, even though I live in Arizona. I have scleroderma on my stomach, legs and arms. Hoping to start on Jakafi in two weeks. I understand that medication works well for skin GVHD most of the time. If that doesn’t work, my doctor will put me on Rezurock.

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Interesting. I had a flare up of my gvhd spinal issues after my first Covid vax. It went away thankfully. But so far the only skin issues I have is this weird rash that comes to my face if I don’t keep it moisturized.

Every time I’m in for a periodic exam with the transplant peeps, one of the first things my doctor does is to look at my back, stomach and arms, pinching them for signs of scleroderma. He also is adamant to keep covered from the sun so I didn’t know if that’s a direct cause for the scleroderma from exposure to that area or not. Thank you for sharing your experience.
I hope the Jakafi works well for you too. I have read other reports that it was a pretty successful treatment option!

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@loribmt

I’m having stone-aged internet issues this week which is really impeding my responses and testing my patience! LOL You posed a really great question so I’m happy to see @athenalee pop in with answers because I was going to tag her into this conversation! She’s a guru when it comes to health and well-being of our bodies through foods in our diets!

A while back I discussed this with my transplant team. What can be done to avoid GvHD of the liver (and in general) The only GvHD I have right now is a slight indication of “potential” liver issues because of minor elevations in my liver function numbers, similar to yours.
A lot of our GvHD is simply hit and miss. It’s whatever our immune system decides needs fixing and starts these ‘little fires’ in our bodies that have to be stomped out with prednisone or other anti inflammatory meds. So whatever we can do to avoid inflammation is one proactive thing we can do to avoid getting those new cells all riled up…such as avoiding any illness, avoiding sun, toxins, etc.

There are some research discussions regarding Choline in the diet. It’s being studied for potential issues within the gut biome which can cause inflammation, which in turn may cause GvHD. But it’s not proven and most of these foods on the Choline list are more important to our overall health than any speculation.
They include eggs, fish, beef, soybeans, wheat germ, chicken, turkey, cruciferous veggies, almonds, dried beans, cottage cheese…you get the picture!

https://gvhdhub.com/medical-information/the-effect-of-choline-rich-diet-on-gvhd#:~:text=The%20study%20highlights%20the%20impact%20of%20diet%20on,and%20Th17%20cells%20activation%2C%20which%20stimulates%20GvHD%20progression.

So, the talk with my team focused more on what foods are GOOD for the liver rather than avoiding the Choline rich foods. And because some of the good foods contain choline, it’s really a matter of keeping a healthy body through diet, exercise and water intake.

There are liver specific foods which help promote the health of the organ.

Eating the Rainbow ~ fresh veggies and fruit filled with antioxidants
Oatmeal
Broccoli
Coffee
Green Tea
Water
Almonds-nuts
Spinach
Blueberries
Herbs & spices

AVOID
Fried foods
Too much sugar
Alcoholic beverages
Unhealthy snacks
Acetaminophen (on a daily basis)

https://liverfoundation.org/for-patients/about-the-liver/health-wellness/nutrition/

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Thank you for all this information! Fortunately, I have been avoiding those “bad foods” and beverages and getting lots of exercise, so hopefully that will minimize the GVHD.

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@edb1123

Thank you for all this information! Fortunately, I have been avoiding those “bad foods” and beverages and getting lots of exercise, so hopefully that will minimize the GVHD.

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You’re doing exactly the same as I am with your diet and lifestyle. We take care of ourselves with wise choices and hope for the best! Sometimes there’s just no rhyme or reason to GvHD.
Just as before AML, I had lived every day trying to avoid any cancers by eating super healthy, avoiding toxins, exercising, didn’t smoke, limited wine, etc…boom! Still cut me off at the knees. There was no reason for it other than a chance mutation. A lesson to live daily to our fullest. ☺️

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