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?

@alive

I'm 5 years post SCT. I'm currently dealing with skin GVHD: scleroderma, rash, dark pigmentation. I went back on Sirolimus in June, but it's not really helping me. My doctor wants to put me on Jakafi after I have my liver biopsy next week and get a diagnosis for what's going on there.

Jump to this post

Just curious about how long you were on Sirolimus before you were tapered off after transplant? When did your GVHD symptoms begin?

I was, actually still am, taking Tacrolimus post 2 years. I had a major setback with GvHD on my spinal cord with my first taper. Got that back under control with Solumedrol infusions for 9 months along with upping the tacro dose. It worked and now I’m excited and a little apprehensive as I’m on the final leg of my taper with .5mg Mon & Thus each week for 3 more weeks. If no issues, I’m off!! Yay! And then I can kiss all my other 6 meds goodbye!

Have to keep just a little moisturizing lotion on my face or I get a weird rash. It almost looks like acne on my cheeks but as long as I keep it moisturized, it’s non-existent! So weird. When I was a teen, if my face looked like, that staying away from lotion was the best thing! I’m sorry you’re dealing with the scleroderma and pigmentation. I hope the Jakafi works well for you.

My liver was always an issue through out all of the AML and transplant. Especially on the 1000 mg IV steroids daily! Yikes. That sent my numbers soaring! LOL. It’s finally stable so I hope everything turns out to be ok with yours! Have you ever had a liver biopsy before? Just to let you know, it’s really easy and not at all uncomfortable.

Has your team suggested Photopheresis for your GVHD?

REPLY
@loribmt

Just curious about how long you were on Sirolimus before you were tapered off after transplant? When did your GVHD symptoms begin?

I was, actually still am, taking Tacrolimus post 2 years. I had a major setback with GvHD on my spinal cord with my first taper. Got that back under control with Solumedrol infusions for 9 months along with upping the tacro dose. It worked and now I’m excited and a little apprehensive as I’m on the final leg of my taper with .5mg Mon & Thus each week for 3 more weeks. If no issues, I’m off!! Yay! And then I can kiss all my other 6 meds goodbye!

Have to keep just a little moisturizing lotion on my face or I get a weird rash. It almost looks like acne on my cheeks but as long as I keep it moisturized, it’s non-existent! So weird. When I was a teen, if my face looked like, that staying away from lotion was the best thing! I’m sorry you’re dealing with the scleroderma and pigmentation. I hope the Jakafi works well for you.

My liver was always an issue through out all of the AML and transplant. Especially on the 1000 mg IV steroids daily! Yikes. That sent my numbers soaring! LOL. It’s finally stable so I hope everything turns out to be ok with yours! Have you ever had a liver biopsy before? Just to let you know, it’s really easy and not at all uncomfortable.

Has your team suggested Photopheresis for your GVHD?

Jump to this post

How exciting to be tapering off! Enjoy your freedom and strong immune system!

I was on Cellcept and sirolimus for 2.5 years after transplant. I had upper and lower GI GVHD soon after my transplant. Then I was off all meds for two years, until this summer. This is my first time having skin GVHD. My doctor hasn’t mentioned Photopheresis yet, since she wants to try Jakafi first. I want to avoid Photopheresis because of the time commitment and how it will effect my job. We’ll see what happens.

I had a liver biopsy prior to my transplant, but my current liver issues are new and unrelated. My scheduled biopsy will be through the jugular vein. This is a first one for me. Hope it goes well.

REPLY
@loribmt

Just curious about how long you were on Sirolimus before you were tapered off after transplant? When did your GVHD symptoms begin?

I was, actually still am, taking Tacrolimus post 2 years. I had a major setback with GvHD on my spinal cord with my first taper. Got that back under control with Solumedrol infusions for 9 months along with upping the tacro dose. It worked and now I’m excited and a little apprehensive as I’m on the final leg of my taper with .5mg Mon & Thus each week for 3 more weeks. If no issues, I’m off!! Yay! And then I can kiss all my other 6 meds goodbye!

Have to keep just a little moisturizing lotion on my face or I get a weird rash. It almost looks like acne on my cheeks but as long as I keep it moisturized, it’s non-existent! So weird. When I was a teen, if my face looked like, that staying away from lotion was the best thing! I’m sorry you’re dealing with the scleroderma and pigmentation. I hope the Jakafi works well for you.

My liver was always an issue through out all of the AML and transplant. Especially on the 1000 mg IV steroids daily! Yikes. That sent my numbers soaring! LOL. It’s finally stable so I hope everything turns out to be ok with yours! Have you ever had a liver biopsy before? Just to let you know, it’s really easy and not at all uncomfortable.

Has your team suggested Photopheresis for your GVHD?

Jump to this post

Once you go off all of your meds I guess your chances of getting GVHD are greatly reduced? Do you still do regular labs? It’s interesting that stem cell recipients seem to suffer more from GVHD than solid organ recipients. But, you all get to go off your meds eventually, and we don’t. Any ideas on that Lori?

I guess because your basically developing a new immune system in your body, but we have just one or more new organs, but the same immune system, our body’s will continue to try to fight off our new organ indefinitely. Also explains why your food allergies go away.

Transplants are remarkable I have to say.

REPLY
@athenalee

Once you go off all of your meds I guess your chances of getting GVHD are greatly reduced? Do you still do regular labs? It’s interesting that stem cell recipients seem to suffer more from GVHD than solid organ recipients. But, you all get to go off your meds eventually, and we don’t. Any ideas on that Lori?

I guess because your basically developing a new immune system in your body, but we have just one or more new organs, but the same immune system, our body’s will continue to try to fight off our new organ indefinitely. Also explains why your food allergies go away.

Transplants are remarkable I have to say.

Jump to this post

Hi, you’re right in that solid organ transplant patients will be on anti rejection meds indefinitely. Your immune system will always look at the new organ, no matter how long you’ve had it, as an invader. It’s not an original factory installed part.
Anti rejection meds such as Tacrolimus are actually anti-inflammatory drugs meant to keep the immune system calm so it doesn’t go all ape on your new organ which is actually keeping the immune system alive by keeping the body going. Geesh! You think it’d be more grateful! LOL

So now you have me curious. Do solid organ transplants have GVHD or is it more Host vs Graft disease? Same principal really but in our case with stem cells, instead of an organ, we gained a new immune system. It doesn’t recognize anything! So instead of just seeing one organ as a threat, our entire bodies becomes the invader and it can launch holy heck against us. So initially we’re on immunosuppressives to hold it back until eventually it begins to recognize our bodies and over time, accepts us and we can get off the tacro.

Being off Tacro or Sacro or any of the other anti rejection meds opens us up to more GVHD. It will always be lurking. It happens, again, when our new immune system sees some crazy thing as a threat and launches an all out war. It can be skin, gut, eyes, any organ. In my case it attacked my spinal cord for no apparent reason. Lost feeling from my waist to my toes. Took a while to recover from that but now I’m perfectly healthy. I always say we transplant patients, no matter what we’ve received need to keep a sense of humor and a sense of adventure!

Since we get an entirely new immune system from a stranger, we also change DNA and blood types. We do have to match HLA markers, usually 10/10 is the best. My donor was a young man from the US. I used to be B+ now I’m O+. And I have all male DNA! 100% donor and 0%my DNA. I also inherit any allergies he might have had and may lose some I had before! Though he was 20 at the time, fortunately I’ve not picked up the desire to wear AXE pit spray or drink cheap beer. And any magazines under my bed are quilting related. LOL

Yes, I have regular labs yet. My leash has been lengthened and can stray further from a doctor’s office as numbers have returned to that of a healthy person!! Yay. So now I’m on monthly labs and that’s great compared to weekly!

My donor was my 1 in 20,000,000 members in the transplant bank.
What is matched when receiving a liver or kidney? Is it blood, HLA markers?

REPLY

Hi, I am a year and a few months from my SCT for AML. Started with acute upper gut while in the hospital, was hard to eat and take on calories, but I avoided the feeding tube. I was put on a short course of Prednisone and Beclomethasone oil and relying on Zofran, which helped me eat a bit more and not lose anymore weight.

At 6 months still struggling with low appetite and a wall of fatigue, shortness of breath, dizzy and feeling like I was dropping out. I was finally diagnosed with heart concerns after I pressed for an EKG resulting abnormal. The cardiologist thinks it was the Gilteritinib, the oncologist thinks it was the transplant. Still feeling poorly I went to Long Term Follow Up and they gave me mouth washes for mild mouth GVHD and kept up with the oil for my gut. My skin and eyes were dry and bothering me and my vision was getting worse so I did drops.

I continued to struggle with fatigue and was losing ground on exercise ability, range of motion, with more pain. Interesting how much pain and discomfort you learn to tolerate, and for how long, while you work with oncology providers to get symptoms properly addressed. Sorting out what is causing what from everything you have been through and all the medications is frustrating. Always making sure the blood tests and liver function stayed doable, and there was no signs of disease. Just kept walking and exercising everyday and trying not to worry too much about relapsing, while avoiding COVID. Happy I could spend masked social distanced time with my family and some friends after being isolated for so long. It was difficult to not be able to hug my grown kids when they came to cheer me up until we had been vaccinated. It was hard not to collapse from a sea of emotion with the first tearful real hugs.

It became obvious I was suffering with chronic GVHD at the end of June after having tapered off the Cyclosporin and started Sirolimus taper. I was prescribed 20 of Prednisone and stayed on Sirolimus. I had improvements in my energy level and breathing and range of motion. Working everyday to regain strength and function. Not liking the side effects, like high cholesterol, poor sleep, muscle and bone wasting, swollen face eyes and ankles etc.

After my annual in August my Bone Marrow Aspirate PCR showed .017 NPM1 mutations. I started to taper Prednisone, just down to 15 now. Hopefully I can taper fast enough and keep GVHD in check so my new immune system can eat up the small amount of mutations. That’s the plan. Fingers crossed.

Trying to increase my walking and trying to ride my bicycle around the neighborhood again, just have to walk my bike up the hills. Sure miss Geology, Gardening and Pottery. No mud dirt or plants for me yet while on immune suppression. My goal is to hike, even just a mile or so at Mt. Rainier again before fall sneaks in, it’s been years while fighting to get better. Could be a bit ambitious…especially with Delta raging.

It’s sunny here today, happy Labor Day!

REPLY
@anieke

Hi, I am a year and a few months from my SCT for AML. Started with acute upper gut while in the hospital, was hard to eat and take on calories, but I avoided the feeding tube. I was put on a short course of Prednisone and Beclomethasone oil and relying on Zofran, which helped me eat a bit more and not lose anymore weight.

At 6 months still struggling with low appetite and a wall of fatigue, shortness of breath, dizzy and feeling like I was dropping out. I was finally diagnosed with heart concerns after I pressed for an EKG resulting abnormal. The cardiologist thinks it was the Gilteritinib, the oncologist thinks it was the transplant. Still feeling poorly I went to Long Term Follow Up and they gave me mouth washes for mild mouth GVHD and kept up with the oil for my gut. My skin and eyes were dry and bothering me and my vision was getting worse so I did drops.

I continued to struggle with fatigue and was losing ground on exercise ability, range of motion, with more pain. Interesting how much pain and discomfort you learn to tolerate, and for how long, while you work with oncology providers to get symptoms properly addressed. Sorting out what is causing what from everything you have been through and all the medications is frustrating. Always making sure the blood tests and liver function stayed doable, and there was no signs of disease. Just kept walking and exercising everyday and trying not to worry too much about relapsing, while avoiding COVID. Happy I could spend masked social distanced time with my family and some friends after being isolated for so long. It was difficult to not be able to hug my grown kids when they came to cheer me up until we had been vaccinated. It was hard not to collapse from a sea of emotion with the first tearful real hugs.

It became obvious I was suffering with chronic GVHD at the end of June after having tapered off the Cyclosporin and started Sirolimus taper. I was prescribed 20 of Prednisone and stayed on Sirolimus. I had improvements in my energy level and breathing and range of motion. Working everyday to regain strength and function. Not liking the side effects, like high cholesterol, poor sleep, muscle and bone wasting, swollen face eyes and ankles etc.

After my annual in August my Bone Marrow Aspirate PCR showed .017 NPM1 mutations. I started to taper Prednisone, just down to 15 now. Hopefully I can taper fast enough and keep GVHD in check so my new immune system can eat up the small amount of mutations. That’s the plan. Fingers crossed.

Trying to increase my walking and trying to ride my bicycle around the neighborhood again, just have to walk my bike up the hills. Sure miss Geology, Gardening and Pottery. No mud dirt or plants for me yet while on immune suppression. My goal is to hike, even just a mile or so at Mt. Rainier again before fall sneaks in, it’s been years while fighting to get better. Could be a bit ambitious…especially with Delta raging.

It’s sunny here today, happy Labor Day!

Jump to this post

Hi @anieke. Happy Labor Day!
Climbing even a portion of Mt Rainier would be a huge motivational tool!! Gorgeous area of the Pacific Northwest! It’s encouraging that some of your energy is returning but you sure have been through the wringer with the transplant aftermath. It can definitely be an energy sapper but wow, being able to bike around your neighborhood and walking, considering where you were a few months ago, is pretty impressive. Baby steps!

You have my sincerest empathy with having to take a sabbatical from geology, gardening and pottery! It’s really been a challenge for me, especially not gardening! But 3 SCT acquaintances have become seriously ill, 2 having perished because of fungal infections from gardening!! One died from fungal meningitis, another from a fungal lung infection similar to blastomycosis. The 3rd man is recovering but regrets not listening to his transplant team…and his wife! It’s all so tragic and could have been avoided.

It’s so critical and really difficult to get those meds balanced isn’t it? My transplant doctor equated the anti rejection meds like dials on a control panel always having to tweak the dials to get things just right. So now you’re trying to taper off the prednisone enough that your new system can take over and do the job intended by having the transplant but not so much that it causes more GvHD. I have my fingers crossed for you and sending positive vibes for an aggressive attack against those mutated cells!!
Time to call out the Attack Minions! So, did you name your new cells?

REPLY
@loribmt

Hi, you’re right in that solid organ transplant patients will be on anti rejection meds indefinitely. Your immune system will always look at the new organ, no matter how long you’ve had it, as an invader. It’s not an original factory installed part.
Anti rejection meds such as Tacrolimus are actually anti-inflammatory drugs meant to keep the immune system calm so it doesn’t go all ape on your new organ which is actually keeping the immune system alive by keeping the body going. Geesh! You think it’d be more grateful! LOL

So now you have me curious. Do solid organ transplants have GVHD or is it more Host vs Graft disease? Same principal really but in our case with stem cells, instead of an organ, we gained a new immune system. It doesn’t recognize anything! So instead of just seeing one organ as a threat, our entire bodies becomes the invader and it can launch holy heck against us. So initially we’re on immunosuppressives to hold it back until eventually it begins to recognize our bodies and over time, accepts us and we can get off the tacro.

Being off Tacro or Sacro or any of the other anti rejection meds opens us up to more GVHD. It will always be lurking. It happens, again, when our new immune system sees some crazy thing as a threat and launches an all out war. It can be skin, gut, eyes, any organ. In my case it attacked my spinal cord for no apparent reason. Lost feeling from my waist to my toes. Took a while to recover from that but now I’m perfectly healthy. I always say we transplant patients, no matter what we’ve received need to keep a sense of humor and a sense of adventure!

Since we get an entirely new immune system from a stranger, we also change DNA and blood types. We do have to match HLA markers, usually 10/10 is the best. My donor was a young man from the US. I used to be B+ now I’m O+. And I have all male DNA! 100% donor and 0%my DNA. I also inherit any allergies he might have had and may lose some I had before! Though he was 20 at the time, fortunately I’ve not picked up the desire to wear AXE pit spray or drink cheap beer. And any magazines under my bed are quilting related. LOL

Yes, I have regular labs yet. My leash has been lengthened and can stray further from a doctor’s office as numbers have returned to that of a healthy person!! Yay. So now I’m on monthly labs and that’s great compared to weekly!

My donor was my 1 in 20,000,000 members in the transplant bank.
What is matched when receiving a liver or kidney? Is it blood, HLA markers?

Jump to this post

Us solid organ people have organ rejection. I found this very informative wiki – https://en.m.wikipedia.org/wiki/Transplant_rejection

It’s matching blood type I guess, or O. I have B neg., so guess my donor was a match. I still can’t get over that you have switched blood type and you have male DNA. I wonder how the Olympics commission would rule on you! I hope your donor had good genes!

Speaking of which, I have three autoimmune diseases. One of which destroyed my bile ducts, hence the liver transplant. And, it still will attack my new bile ducts eventually. And, one of the others is wrecking all kinds of new havoc on my body.

I wonder how stem cell recipients would react if they have an autoimmune disease.

REPLY
@athenalee

Us solid organ people have organ rejection. I found this very informative wiki – https://en.m.wikipedia.org/wiki/Transplant_rejection

It’s matching blood type I guess, or O. I have B neg., so guess my donor was a match. I still can’t get over that you have switched blood type and you have male DNA. I wonder how the Olympics commission would rule on you! I hope your donor had good genes!

Speaking of which, I have three autoimmune diseases. One of which destroyed my bile ducts, hence the liver transplant. And, it still will attack my new bile ducts eventually. And, one of the others is wrecking all kinds of new havoc on my body.

I wonder how stem cell recipients would react if they have an autoimmune disease.

Jump to this post

Having 2 sets of DNA, I always think it’s the perfect fodder for a murder mystery. Lol. My blood DNA is different than taking a swab sample from my mouth.
Your question about autoimmune disease and transplant: with the transplant of an immune system from an unrelated donor, our immune system is actually reset. Previous auto immune disease disappears. However, it’s not to say another auto immune disease doesn’t start in the new system. And believe me, the side effects are not minimal. Transplants for MS patients, etc., are being used more frequently but it is hella arduous and there’s a mortality rate associated with the procedure, along with aggressive chemo to clear the Martow and lymph system. So there is heavy consideration before it’s used as the “cure”.
I’m truly sorry to hear about your auto immune disease causing chronic issues with your liver.

REPLY
@loribmt

Having 2 sets of DNA, I always think it’s the perfect fodder for a murder mystery. Lol. My blood DNA is different than taking a swab sample from my mouth.
Your question about autoimmune disease and transplant: with the transplant of an immune system from an unrelated donor, our immune system is actually reset. Previous auto immune disease disappears. However, it’s not to say another auto immune disease doesn’t start in the new system. And believe me, the side effects are not minimal. Transplants for MS patients, etc., are being used more frequently but it is hella arduous and there’s a mortality rate associated with the procedure, along with aggressive chemo to clear the Martow and lymph system. So there is heavy consideration before it’s used as the “cure”.
I’m truly sorry to hear about your auto immune disease causing chronic issues with your liver.

Jump to this post

I think mystery writer is your new calling, Lori. Excellent plot!

Very interesting about autoimmune diseases going away after stem cell replacement. Makes sense though. Doesn’t sound like a good option now certainly, but maybe offers some hope with future research, especially for the more devastating ones like MS and CFS. There are few medications that really work for most autoimmune diseases,

I take ursodial for PBC, although it doesn’t have a great track record. I think like 30% of those with PBC reject in the first year, then it increases, but not rapidly. My primary didn’t connect my symptoms which I had reported over many years, so that’s why it wasn’t diagnosed until I was in stage 3 liver cirrhosis. But, I’m very good to my new liver, so hopefully he’ll stay around for many years. Sjogren’s on the other hand has gone rampant after my transplant, never had any symptoms prior, so weird.

REPLY

Hi my husband is 1 yr out of stem cell transplant. He has been dealing with GVHD for about 5 months now. His Dr and the whole team have been working with him. Steroid creams, eye drops, etc. but the prednisone he is still on because of GVHD has caused him to have to insulin shots, it effected his sugar #. He never has problems with it prior to prednisone. Dr’s are lowering slowly, 🙏🏻 This works. Besides all the medicine he is still on including Tac. I’m so very proud of his disposition. Thank you god for keeping him here with me.
Linda

REPLY
@ksmnana

Hi my husband is 1 yr out of stem cell transplant. He has been dealing with GVHD for about 5 months now. His Dr and the whole team have been working with him. Steroid creams, eye drops, etc. but the prednisone he is still on because of GVHD has caused him to have to insulin shots, it effected his sugar #. He never has problems with it prior to prednisone. Dr’s are lowering slowly, 🙏🏻 This works. Besides all the medicine he is still on including Tac. I’m so very proud of his disposition. Thank you god for keeping him here with me.
Linda

Jump to this post

Hello Linda, welcome to Mayo Connect. I’m glad you found our discussion on GvHD. Being the caregiver for someone with GvHD is a bit of a roller coaster ride for both of you, isn’t it?! Your husband’s a very lucky man to have you by his side to help weather one of the most challenging times of his life.
Congratulations on his one year Re-birth day. That’s a huge mile stone! It’s reassuring to hear he has such a great disposition throughout his hurdles with GvHD. Unfortunately, in all various shapes and forms, it is a pretty common side effect with our gift of a second chance at life.

It’s ok to be on Tacro and the other meds for a longer period. I’m 2 years, 2 months past my 2nd anniversary and just now tapering off the Tacro. It has kept me from the worst of any more GvHD events for which I’m grateful to my transplant doctor for taking this conservative approach. Eventually, the new immune system will acclimate to our bodies and calm down on its own. But in the meantime, prednisone is often the wonder drug to stomp out the little fires that pop up. I’m sorry to hear he’s having to take insulin right now but most of these side effects diminish or disappear when he’s off the prednisone.

If you don’t mind my asking, what led your husband to needing a stem cell transplant?

REPLY
@athenalee

I think mystery writer is your new calling, Lori. Excellent plot!

Very interesting about autoimmune diseases going away after stem cell replacement. Makes sense though. Doesn’t sound like a good option now certainly, but maybe offers some hope with future research, especially for the more devastating ones like MS and CFS. There are few medications that really work for most autoimmune diseases,

I take ursodial for PBC, although it doesn’t have a great track record. I think like 30% of those with PBC reject in the first year, then it increases, but not rapidly. My primary didn’t connect my symptoms which I had reported over many years, so that’s why it wasn’t diagnosed until I was in stage 3 liver cirrhosis. But, I’m very good to my new liver, so hopefully he’ll stay around for many years. Sjogren’s on the other hand has gone rampant after my transplant, never had any symptoms prior, so weird.

Jump to this post

I was bummed to find out those books are already being written and someone told me CSI has had an episode or two with the same plot. LOL.
You’re so right, with time and research maybe there will be a future for stem cell transplants for more autoimmune diseases. Before that can happen, side effects of the transplant will need to be less dramatic. Now, however, it is not commonplace simply because it is grueling and comes with its own challenges.

Interesting, we share another drug…Ursodial. I’ve been taking that since transplant as a prophylactic to prevent liver issues.

Getting a second chance isn’t without some trade off is it? We’ll never fully be 100% of our former selves but it beats pushing daisies up from the underside. 😉

REPLY
Please sign in or register to post a reply.
  Request Appointment