Chronic GVHD ~ Let’s talk about it!

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.

@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!

@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.

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.

@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.

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

Hi Pam, I’m happy to hear your surgery went well! That has to be a relief, except for the reaction to the tape! Hopefully that area is healing nicely and leaves no trace! Paper tape is a must for me now too. Never thought of myself as ‘thin skinned’... LOL

So far the second shot has yielded no surprises for me. Yay! First time around with the flare up was enough. I did have an antibody test run on my blood a couple of days before my 2nd shot.
The results showed, one month after the first vaccination, that I did indeed have a strong immune response to the vaccine. I was elated considering I’m still on Tacrolimus.
I’m happy you were able to get yours. Feeling flu-like for a couple of days is far better than us getting the virus!

Recalling an earlier post, you live in Mesa, AZ. Do you take any extra precaution from sun exposure for your eyes and skin?
Chatting with my transplant doctor at my last appt he wanted to know what I wear when out in the sun by way of coverup clothing. I told him I’m judicious with wearing strong, broad spectrum sunscreen. He said that sadly, that’s not enough. High collars, long sleeves, hat and sunglasses because we transplant patients have a higher chance for skin cancer. Sigh...

Enjoy the warmer weather. Today we were treated to a snow covering again after such a warm, pleasant weekend, Oh well...spring in Wisconsin. LOL.

All the best! Lori

@cuda81 Hello ~ welcome to Mayo Clinic Connect. You’ll find Connect is a very encouraging community. Our goal is to offer help and hope to others through our common experiences and shared stories.

I see you just logged on for the first time this morning and “liked” my posting regarding GvHD. What prompted your visit to Mayo Clinic Connect?
Are you familiar with Graft vs Host Disease because you or a someone you know has had a stem cell transplant?

It would be wonderful if you’d share the transplant story or your experiences with GvHD.
Are there any questions I can answer for you?

Again, welcome to Connect and I hope to hear from you. Lori.

I just had my 3rd year annual checkup. My daughter’s kidney is doing a great job for me and I’m so grateful. I’ve had both vaccines and had more of a reaction after my 1st shot and very little after my second. I had many tests done and my phone was pinging with lab and other test results for two days. My endocrinologist recommended a biphosphate infusion and stopping the Fosamax, since it was giving me heartburn. I’m wondering if anyone else has done this and if there were side effects.

@cmael Congratulations on your 3rd anniversary!! That’s a wonderful milestone and I’m sure brings a sense of relief for you. Think about where you were and how you felt 3 years ago. Amazing what the human body is able to do, isn’t it? It must be extra special knowing your daughter now gave you the gift of life. ☺️

Also congrats on the vaccinations! We transplant people need to be extra vigilant for the rest of our lives and getting the covid vaccination is crucial step towards prevention of this sometimes catastrophic virus.

Not having any personal experience in taking biphosphates or other bone building medications I’m sending you some links to conversations in the Bones, Joints and muscles group. I think you’ll be able to connect with other community members who can offer some guidance and answer questions.

Here are a few of the discussions I found.

https://connect.mayoclinic.org/discussion/reclast-infusion/
https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/?commentsorder=newest#chv4-comment-stream-header