← Return to Chronic GVHD at 11 months post stem cell transplant: Discouraged

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi, @marylou329 Sending positive vibes your way for only good news with the Fibroscan today! Finger’s crossed the Ursodial did the trick and all is well with your liver…and no GVHD! Hugs!

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Replies to "Hi, @marylou329 Sending positive vibes your way for only good news with the Fibroscan today! Finger’s..."

Hi @marylou329, I’m going to bring your reply posted in another gvhd discussion back into this one where we’ve been chatting. ☺️
Your reply to my post:
“ Hi Lori, I had my fibroscan yesterday, but no results yet. However, my LFT'S were elevated even on the Ursidiol. My conservative transplant doctor started me on prednisone and an anti fungal. He said it's better not to wait and stated it is mild liver GVHD. I was hoping I was going to dodge that bullet after 1yr and 3 month's, but I guess GVHD is hard to dodge.
I will see him in 2 weeks and I pray it calms my liver down. I'm not looking forward to the Prednisone because of the side effects, but you do what you have to do and I will deal with it.
Reading your post gives me hope and makes me feel like I'm not alone.”

Gvhd, the way my doctor described it, can be like having little fires popping up here and there. So they need to stomp them out as they pop up. Usually with a burst of steroids or longer. Eventually the fires lessen to a point where there are very few, if any remaining.

In a nutshell, what happens is your new immune system, which is adaptive, takes time to recognize all the foreign proteins it encounters in its new host, your body. Just as your old immune cells did, they patrol looking for inflammation and send out killer cells to protect and defend.
The liver can take a hit during cancer treatments and with the transplant chemo and meds. If the liver remains inflamed, the new immune system you’ve been gifted, feels the needs to rush to the rescue and attack the offenders! However, it becomes an attack on the liver and that’s NOT helpful! LOL. Sooo, steroids to the rescue!! Steroids calm down the inflammation, which in turn, calms the watchdog immune system. Eventually the protective cells should lose interest in that particular little fire and move on and stop being so aggressive.

Having a transplant doctor who is more conservative in his treatment is actually a good thing. My doctor is similar. Very metered, no knee-jerk reactions to events. He lets things play out a bit before rushing into a treatment. But when he says, “It’s time.”, then I know he has made a decision based on careful thought or, even his spidey sense is telling him ‘this needs to be done”. Your doctor isn’t taking any chances in making sure there’s no gvhd munching around on your liver. If so, the steroids will throw a damp towel on that activity.

I’m sure you’ll be sitting on pins and needles the next two weeks until you see some positive results with your next blood tests and also the results of your fibroscan. I’m hoping for all best news right along with you. As for the steroids, on the plus side, I still remember the rush of energy I had on steroids! So close the holidays, you can use that force for good! Super woman! Please keep me posted, ok?