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?

Thanks for your post. I am at about the same point post transplant as you are. I had some acute gvhd but my worst has been chronic eye and vaginal. I am using autologous serum tears for the eyes with decent results but I have a steroid induced cataract that is really impacting my vision. The vaginal is something they never warned me about. I will just leave it at this: I look like a 2 year old now. I am on .5 and 1.0 sirolimus every other day and just this week had my first covid vaccine. I think that I’ve started flaring—especially in my eyes. I’m determined not to go back on prednisone. I really struggle with fatigue and am still not able to work.

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@loribmt,
I am a solid organ transplant recipient. I know how important our annual transplant anniversaries are for all of us with transplants. I am ready celebrate that your doctor is working closely with you to achieve a good balance with your Tacrolimus. As a liver/kidney recipient, I will need to be on it for the rest of my life, and mine, too, is monitored thru labs and adjusted as needed. I find it so interesting how this medication is such a major part of our New Lives.

Aren't we the lucky ones, to have awesome doctors who monitor our meds and who select the best treatment for us as individuals!

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@pamh480

Thanks for your post. I am at about the same point post transplant as you are. I had some acute gvhd but my worst has been chronic eye and vaginal. I am using autologous serum tears for the eyes with decent results but I have a steroid induced cataract that is really impacting my vision. The vaginal is something they never warned me about. I will just leave it at this: I look like a 2 year old now. I am on .5 and 1.0 sirolimus every other day and just this week had my first covid vaccine. I think that I’ve started flaring—especially in my eyes. I’m determined not to go back on prednisone. I really struggle with fatigue and am still not able to work.

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@pamh480 Hi Pam, welcome to Mayo Clinic Connect. Oh gosh, I’m so sorry you’re having issues with gvhd too. Dry eyes seem to be the chief complaint among all of us. I’m glad the autologous serum tears are working for you. Does your local pharmacy mix them for you or do you get them from a specialty pharmacy? So far I’ve been able to get away with Systane Ointment at night. That’s made a huge difference. Will you be able to have cataract surgery in the future?

I remember ‘any vaginal problems?” as being one of the questions routinely asked at exams and know of other women having issues. I’m hoping we get some more transplant patients joining in our conversations who have had a similar experience they can share.
Do you feel the Covid vaccine might have prompted the flaring of gvh symptoms? I don’t blame you for not wanting to get back on Prednisone but maybe a burst (5 days of 40mg) would calm things down a little. Did you have any complications with your post-transplant vaccinations?

Do you have some days where you feel less fatigued that others? Right now I’m in a relative calm and have energy. But I dealt with the fatigue too and it was so frustrating. I could really tell when I pushed too hard on an energetic day. It was like 2 steps forward and 1 back… My nurses/NPs drilled into me every day: Listen to your body!! That was one of the most difficult lessons for me to learn, I swear.

It’s great to have you on board! Hope to chat more with you. Lori.

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@loribmt

@pamh480 Hi Pam, welcome to Mayo Clinic Connect. Oh gosh, I’m so sorry you’re having issues with gvhd too. Dry eyes seem to be the chief complaint among all of us. I’m glad the autologous serum tears are working for you. Does your local pharmacy mix them for you or do you get them from a specialty pharmacy? So far I’ve been able to get away with Systane Ointment at night. That’s made a huge difference. Will you be able to have cataract surgery in the future?

I remember ‘any vaginal problems?” as being one of the questions routinely asked at exams and know of other women having issues. I’m hoping we get some more transplant patients joining in our conversations who have had a similar experience they can share.
Do you feel the Covid vaccine might have prompted the flaring of gvh symptoms? I don’t blame you for not wanting to get back on Prednisone but maybe a burst (5 days of 40mg) would calm things down a little. Did you have any complications with your post-transplant vaccinations?

Do you have some days where you feel less fatigued that others? Right now I’m in a relative calm and have energy. But I dealt with the fatigue too and it was so frustrating. I could really tell when I pushed too hard on an energetic day. It was like 2 steps forward and 1 back… My nurses/NPs drilled into me every day: Listen to your body!! That was one of the most difficult lessons for me to learn, I swear.

It’s great to have you on board! Hope to chat more with you. Lori.

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HI Lori–thanks for your reply. I went through all the OTC ointments and drops and nothing worked. FWIW I was graded IV on the ocular gvhd chart. Mayo mixes my serum tears (I live in Mesa AZ).
I think the vaccine MAY have caused a flare, but who knows-?–I really hesitate on the pred, because I am scheduled for removal of a cholesteatoma on 4-6 (ear surgery). If it gets much worse I will. I see EVERYBODY next week (pre-surg, ophthalmology and hematology). I have been having some mid-back pain when I am up for extended periods (standing or sitting–especially with arms extended like cooking) and that is contributing to my fatigue I think. I do have really good days–I just have to remember that I can't spend all my energy on those days. I just tell myself, every birthday I get to see my grandkids celebrate and every milestone my adult kids pass make this all worthwhile.

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@pamh480

HI Lori–thanks for your reply. I went through all the OTC ointments and drops and nothing worked. FWIW I was graded IV on the ocular gvhd chart. Mayo mixes my serum tears (I live in Mesa AZ).
I think the vaccine MAY have caused a flare, but who knows-?–I really hesitate on the pred, because I am scheduled for removal of a cholesteatoma on 4-6 (ear surgery). If it gets much worse I will. I see EVERYBODY next week (pre-surg, ophthalmology and hematology). I have been having some mid-back pain when I am up for extended periods (standing or sitting–especially with arms extended like cooking) and that is contributing to my fatigue I think. I do have really good days–I just have to remember that I can't spend all my energy on those days. I just tell myself, every birthday I get to see my grandkids celebrate and every milestone my adult kids pass make this all worthwhile.

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@pamh480 Hi Pam, Thought I’d check in with you to see how your surgery for a cholesteatoma went earlier this month. Has this impacted your hearing at all? Hopefully all is well now and you’re recovering nicely.

I was also wondering if your gvh flare settled down a bit? Oddly, I had a return of some symptoms too, about 2 weeks after my 1st vaccine appt. But it has disappeared and I was able to get the 2nd dose. Finger’s crossed there’s no repeat. At least I know now that it’s temporary and caused by inflammation. Beats getting the virus. After speaking with my neurologist, any risk from the vaccine definitely outweighs getting the virus.

Re-reading your previous message about your back pain and fatigue. Have you worked with a physical therapist? I found during all my treatment and recovery that my core muscles suffered greatly. I thought I’d been trying to exercise and been active enough to keep ‘in shape. Wrong! LOL
But after checking in with my oncologist, he set me up with a PT. Wow, learning some simple core exercises really made a huge difference in my stamina, back fatigue, standing and balance. Just a thought.

Since we chatted last, Connect has gone through some Spring remodeling and decorating, Have you had a chance to check out the new and improved site? It’s more streamlined and you can now control the amount of emails received, personalize notifications and search easier.

Sending positive wishes your way! Be kind to yourself and remember to listen to your body. Lori.

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@loribmt

@pamh480 Hi Pam, Thought I’d check in with you to see how your surgery for a cholesteatoma went earlier this month. Has this impacted your hearing at all? Hopefully all is well now and you’re recovering nicely.

I was also wondering if your gvh flare settled down a bit? Oddly, I had a return of some symptoms too, about 2 weeks after my 1st vaccine appt. But it has disappeared and I was able to get the 2nd dose. Finger’s crossed there’s no repeat. At least I know now that it’s temporary and caused by inflammation. Beats getting the virus. After speaking with my neurologist, any risk from the vaccine definitely outweighs getting the virus.

Re-reading your previous message about your back pain and fatigue. Have you worked with a physical therapist? I found during all my treatment and recovery that my core muscles suffered greatly. I thought I’d been trying to exercise and been active enough to keep ‘in shape. Wrong! LOL
But after checking in with my oncologist, he set me up with a PT. Wow, learning some simple core exercises really made a huge difference in my stamina, back fatigue, standing and balance. Just a thought.

Since we chatted last, Connect has gone through some Spring remodeling and decorating, Have you had a chance to check out the new and improved site? It’s more streamlined and you can now control the amount of emails received, personalize notifications and search easier.

Sending positive wishes your way! Be kind to yourself and remember to listen to your body. Lori.

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Hi Lori—surgery went well with the exception of someone didn’t believe me when I said paper tape only. I got a pretty bad hematoma on my neck even tho I told everyone my skin was too fragile for regular tape. Oh well. The exercise thing is a good idea. I’ll ask. I got my second shot and had more of a reaction with a few days I’d fever and fluish response. Glad you were able to get yours. So far no flare tho. 🤞 take care

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