Chronic GVHD ~ Let’s talk about it!

Posted by Lori, Volunteer Mentor @loribmt, Mar 18 12:46pm

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?

@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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@loribmt

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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👍😊

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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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Ha! A fountain of information you are Lori…a naturally sparkling, bubbly fountain that is!

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@athenalee

Ha! A fountain of information you are Lori…a naturally sparkling, bubbly fountain that is!

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Being that effervescent makes me wonder if it’s just gas! Hahahaha!

Athenalee, you’re the knowledgeable one! Thank you for all the input you give for the health and well-being of fellow transplant patients.
Your transplant culinary arts zoom with @estrada53 sounds like a really cool idea! I’m happy to see so many people signing up because I think it will be very valuable and informative. I’m hoping to possibly join you all at some point but for now the timing will be an issue and I’d miss the meetings.
But wow, good luck! It will be fun for everyone to actually hear and see each other! A fantastic bonding experience too!

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@loribmt

Being that effervescent makes me wonder if it’s just gas! Hahahaha!

Athenalee, you’re the knowledgeable one! Thank you for all the input you give for the health and well-being of fellow transplant patients.
Your transplant culinary arts zoom with @estrada53 sounds like a really cool idea! I’m happy to see so many people signing up because I think it will be very valuable and informative. I’m hoping to possibly join you all at some point but for now the timing will be an issue and I’d miss the meetings.
But wow, good luck! It will be fun for everyone to actually hear and see each other! A fantastic bonding experience too!

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I love learning new things, so it’s been great learning from you about stem cell transplants. And, much appreciation to you for sharing your knowledge. I did copy and add the info you posted on GVHD and diet to add to my transplant culinary arts resource list.

When you feel you have the time, it would be great to have you join. We don’t expect that everyone will join every time. I was going to ask you to maybe host a webinar since there is so much I learned from you on food safety tips.

We’re excited to be able to discuss and share with Connect folks live! Especially these days with Covid still so prevalent. Plus, people can still join and be anonymous through Zoom if they choose, but still gain from the experience.

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I’m so grateful for all of you! Love some input on if anyone has had gallbladder issues? I’m a caregiver for my juvenile onset type 1 diabetic/ kidney failure stage 4 for my sister. Diabetic for 50 years. Her doctors have never mentioned gallbladder. Issues with stomach and severe back pain/ bathroom issues (TMI) . Hemoglobin 5.8 required blood transfusion. Couldn’t find where she or if is bleeding somewhere. New word for my list Hyda nuclear scan which test for slow leak in an organ. Doctors never mentioned maybe a small bleed out in an organ. A doctor mentioned that new word above. Her numbers aren’t stable even after transfusion. Please share your experiences. I’m contacting a G.I.fingers crossed. P.S. working on not being do wordy !

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@cathyherman

I’m so grateful for all of you! Love some input on if anyone has had gallbladder issues? I’m a caregiver for my juvenile onset type 1 diabetic/ kidney failure stage 4 for my sister. Diabetic for 50 years. Her doctors have never mentioned gallbladder. Issues with stomach and severe back pain/ bathroom issues (TMI) . Hemoglobin 5.8 required blood transfusion. Couldn’t find where she or if is bleeding somewhere. New word for my list Hyda nuclear scan which test for slow leak in an organ. Doctors never mentioned maybe a small bleed out in an organ. A doctor mentioned that new word above. Her numbers aren’t stable even after transfusion. Please share your experiences. I’m contacting a G.I.fingers crossed. P.S. working on not being do wordy !

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Hi Cathy, I was just reading over some of your other discussions about your poor sister and all that’s been going on in her life. With her diabetes, kidney failure and now all the agony of these digestive issues she must be feeling so miserable! A hemoglobin of 5.8 is super low! I’m betting she felt like moving at a snail’s pace!
You’re very loving and generous to be so dedicated and committed to her health and medical care. Caregiving can be pretty stressful so I hope you’re also taking time for yourself to decompress!

Just a quickie…don’t worry about being too wordy! Think of us as all sitting around the kitchen table with a cuppa in the morning. In my group of family and friends we’re never economical with words. A good chat is how we help each other. It’s all good!

With your sister’s unexplained possible blood loss resulting in a low Hgb level, did she by any chance have her Covid Vaccinations? There are discussions in our forum with members who have had the virus or vaccines and are experiencing similar symptoms with low hemoglobin or low iron levels in their blood. Most have had tests and scopes to determine if there is a slow blood leak somewhere only to find it is related to the vaccine. I’m certainly not implying that this is her situation but it might be something worth mentioning to her PCP
https://connect.mayoclinic.org/discussion/iron-depletion-in-blood-and-covid-vaccine/?pg=7#comment-625176
I’ve not had any gall bladder problems personally. But the test your sister’s doctor mentioned is called a HIDA scan. I posted a link from Mayo so you can see what that’s all about.
https://www.mayoclinic.org/tests-procedures/hida-scan/about/pac-20384701
Do her doctors suspect the gall bladder for her stomach and digestive issues?

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@loribmt

Hi Cathy, I was just reading over some of your other discussions about your poor sister and all that’s been going on in her life. With her diabetes, kidney failure and now all the agony of these digestive issues she must be feeling so miserable! A hemoglobin of 5.8 is super low! I’m betting she felt like moving at a snail’s pace!
You’re very loving and generous to be so dedicated and committed to her health and medical care. Caregiving can be pretty stressful so I hope you’re also taking time for yourself to decompress!

Just a quickie…don’t worry about being too wordy! Think of us as all sitting around the kitchen table with a cuppa in the morning. In my group of family and friends we’re never economical with words. A good chat is how we help each other. It’s all good!

With your sister’s unexplained possible blood loss resulting in a low Hgb level, did she by any chance have her Covid Vaccinations? There are discussions in our forum with members who have had the virus or vaccines and are experiencing similar symptoms with low hemoglobin or low iron levels in their blood. Most have had tests and scopes to determine if there is a slow blood leak somewhere only to find it is related to the vaccine. I’m certainly not implying that this is her situation but it might be something worth mentioning to her PCP
https://connect.mayoclinic.org/discussion/iron-depletion-in-blood-and-covid-vaccine/?pg=7#comment-625176
I’ve not had any gall bladder problems personally. But the test your sister’s doctor mentioned is called a HIDA scan. I posted a link from Mayo so you can see what that’s all about.
https://www.mayoclinic.org/tests-procedures/hida-scan/about/pac-20384701
Do her doctors suspect the gall bladder for her stomach and digestive issues?

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She is vaccinated. Looking to see when she received shots and I’ll compare blood work before and after the shot. Helpful information!pancreas isn’t producing enzymes . Put on Creon Which helped immediately. Researching that medication maybe a coincidence symptoms began around that time. Her digestive system has been a mess . Webs sites are very helpful greatly appreciate any knowledge I can get my hands on. Love the support!!!

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@cathyherman

She is vaccinated. Looking to see when she received shots and I’ll compare blood work before and after the shot. Helpful information!pancreas isn’t producing enzymes . Put on Creon Which helped immediately. Researching that medication maybe a coincidence symptoms began around that time. Her digestive system has been a mess . Webs sites are very helpful greatly appreciate any knowledge I can get my hands on. Love the support!!!

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Hopefully the Creon will do the job getting her pancreas functioning normally again. Boy, she’s really been through the wringer with all of this, huh. Digestive issues are just awful on top of everything else she’s going through. But it really does sound like she is getting good medical care. Unfortunately, these complicated medical issues can take time to get resolved.

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