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Chronic GVHD ~ Let’s talk about it!
Transplants | Last Active: Nov 15, 2022 | Replies (68)Comment receiving replies
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.
Replies to "Thanks for your post. I am at about the same point post transplant as you are...."
Good morning, Pam! Thought I’d drop by to see how things are in your corner of the world. In a month I’ll be at the 2.5 year mark after my transplant and right now….shhhhh…things have settled down to a predictable level. I’m finally off all my meds except for the daily antiviral.
Have to be honest, I was really reticent to start the Tacrolimus taper again after 2 failed attempts earlier in recovery. My doctor kept me level for another year just to make sure and then we started a sloooow taper a few months ago. 3rd time was a charm! Pfhew. Felt a bit strange for the first week not being tethered to my pill box. Hah, didn’t take long for me to turn it into a bead box though.
This is a slow and steady challenge for us. How are you feeling? Any more GvHD flairs? I hope you’ve been able to return to work. Is your fatigue improving?
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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.