Chronic GVHD at 11 months post stem cell transplant: Discouraged

@marylou329
Hello Marylou ! Not easy to battle serious illness!
If your husband is driving two hours one way, consider staying one night overnight
Other idea is, maybe you can find additional driver to accompany you two and take turns driving.
Two hours one way is not easy . I hope your liver recovers so you can enjoy your time, GOD S BLESSING FOR YOU AND YOUR HUSBAND
HANYA

Sorry to hear about your experience, but know that we all have setbacks but perhaps in different ways. I had terrible skin GVHD and was on high doses of steroids. As soon as we tapered off it would come rushing back. This lasted for months. Eventually I had to get a different treatment (19 sessions of photopheresis) before me and my new immune system found common ground. It’s as much a mental battle as much as the physical one. Stay strong and don’t give up until the miracle happens (one of my favorite sayings). We are all sending you positive energy. There is a happy future for you, keep moving towards it.

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!

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?

I will be baking up a storm. 😅🤣.
I will keep you posted. Its like whack a mole.😆

@marylou329 You go gurl!! Use your steroid power for good! 😂

@marylou329
Hello, I would just like to add that I was on prednisone for months combating skin GVHD, as high as 130mg a day. One important thing that my doctor told me was to keep exercising my legs so I climbed many flights of steps everyday. The reason is that prednisone can cause leg muscle loss and weakness and then if you lose mobility other body systems start to decline. This is not to scare you just food for thought, exercise those legs while you are baking up a storm 😊. Don’t worry, this too shall pass.

Thank you. I will keep that in mind. I don't need another issue. I do tap dance, but that's once a week. I will have to go up and down our stairs. My doctor is putting me on 40 mg of prednisone.

@loribmt
My Fibroscan came back that I had very mild Grade 1 fatty liver. I started the steroids yesterday and so far so good. I'm not hyper so no baling is getting done 🤣and I am sleeping well. I hope it continues that way.

@marylou329 LOL well, when that prednisone kicks in I expect you’ll be baking up a storm, filling cookie tins for the neighbors and setting up a stand on the corner. 😂
Years ago, I had an issue requiring mega-doses of steroids. For several days I was in-patient for 1000 ml daily of Solumedrol. After being released, I would then receive 2- 500ml infusions twice weekly, with many months of taper down to 250ml weekly, etc. OMG, I’d wake up the next morning at 7, just vibrating!! I swear I could have shingled a roof, laid whole house carpeting, mowed an acre lawn by hand, run a marathon all before 9 AM. 😂 So, obviously I didn’t actually do any of that but I did get my PT exercises in, some extra cleaning done around the house and made really wanky art work! Kinda miss some of those days!
Anyway, glad you’re doing ok and nothing egregious with GVHD!
Happy holidays to you and your family! It’s times such as these when we really feel the deep appreciation for being given a 2nd chance at life. Hugs!