Chronic GVHD at 11 months post stem cell transplant: Discouraged

Hi Deb, Graft Vs Host Disease can be a discouraging companion to some of us following our bone marrow/stem cell transplant. Gvhd can totally disappear for some and for others it is a chronic pain in the…wherever it decides to pop up!

With the stem cell transplant, we received a brand new immune system…a gift of life from someone else. The new cells (the graft), which develops into an immune system for us, are now circulating in the body and perceives the body as foreign. They’re new, aggressive and ready to fight! And like any good, healthy immune system, their mission is to seek out inflammation and destroy or minimize damage from the invader. Which obviously poses a problem when it is attacking us, its host! It can be a mystery to what triggers the events. Could be a simple cold to trigger a lung issue, sun damage can trigger skin reactions…

That’s why we’re on immunosuppressants initially with our transplants. Unlike a solid organ transplant such as heart, liver, kidneys where patients are on anti-rejection meds (strong anti inflammatory drugs) life long, most SCT patients eventually can be weaned off. Our new immune system is adaptive and will learn to adjust to the proteins in the host body. Occasionally it can take longer to adapt and in some people it may persist causing chronic gvhd (C-gvhd).

I had gvhd symptoms starting within two weeks after my final dose of Tacrolimus with crippling pain in my wrists and hands. A quick burst of steroids nipped that one in the bud. However, a month later I had another atypical gvhd issue. I developed inflammation on my spinal cord. I lost all sensation from my waist to my toes in a matter of weeks. A week back in the hospital on massive doses of IV steroids got me up walking again. That was followed by 4 infusions of Rituximab over a month, and then 9 months of weekly solumendral IVs to calm the inflammation. I was also placed back on low dosage tacrolimus for another 2.5 years. (I was still on the antibiotics, antiviral, antifungal, etc.). After weaning off tacro, I never had another flair. The only remaining artifact I have is a little recurring area in my mouth but that’s treated as needed with tacro ointment.

From my broad exposure to many BMT/SCT patients, it’s a mixed bag of gvhd issues, I’d say. It seems the bulk of us are off long term meds but may take a quick burst of steroids if there are flairs. There are others who are taking Jakafi or REZUROCK® (belumosudil) short or long term for chronic gvhd.

I know being put back on anti inflammatory meds for gvhd can feel like a setback, one that I can completely relate to. But by doing so, it allows more time for the over-eager, high achieving immune system to calm down, get to know your proteins a little more and eventually learn to play well together. Having some gvhd, from my experience and information from my team, can be viewed as a positive indication that the new immune system is indeed working and will also be fighting to keep your cancer from returning. Think of graft vs host as graft vs leukemia! Takes on a whole new meaning.

So hang in there, Deb. If you don’t mind sharing what was impacted by gvhd for you?

Hi Lori- Thank you so much for responding. It sounds like your GVHD was really bad and it’s very encouraging to know you were eventually able to come off the tacro. Mine started with stomach issues, then had mouth sores, rashes, vaginal itching, joint pain and extreme fatigue. This went on for several weeks before they diagnosed GVHD and started me back on all the meds. It’s been a week on meds and I do feel a lot better as the symptoms have all greatly diminished. At this point I’m trying to get a positive mindset around the situation and your words really helped, so thank you.

@deb913 Sometimes diagnosing gvhd can be more of a process of elimination. So I’m really glad that your doctors were able to distinguish the cause and get you back on the meds.
I know, I know!! It’s frustrating to be back on a handful of pills daily, especially when you’d been feeling so great! I often quip that with these BMTs we have to maintain a sense of humor, a sense of adventure and to be adaptable.
Because we sure have to learn to roll with the punches.

After my two episodes with gvhd, it’s been pretty clear sailing over the past 6+ years. I’ll have days when I feel like the energizer bunny…several in a row! And then I’ll have a day like today, when my motivation and energy are in the ‘plllffffbbt’ mode. 😂 What’s special is that our bodies are meant to heal! Sometimes they just need help. Wrestling your excitable immune system into compliance may take a little bit of coaxing with meds and time but eventually things should setting down. Like I said, I was on the tacro for 2.5 years. No harm done! Most people with solid organ transplants are on tacro or other anti-rejection meds for life. This isn’t a setback…your immune system is working! It just needs to back off from being an overachiever. ☺️

Curious to know if you have any signs of lupus anymore?

Hi Lori - thanks for those words- very helpful to get your perspective. Funny you should mention the lupus because I did get a positive ANA during the GVHD flare and the rheumatologist said we should treat it like GVHD and monitor for lupus etc. when things calm down.

I was off all meds for two years when I developed skin GVHD. My doctor put me back on sirolimus and added Jakafi. It’s been 4 years and she is slowly weaning me off the immunosuppressives.

It’s good that your doctor is on top of things and addressing the issues quickly. You don’t want GVHD to go unaddressed and get out of hand. Hang in there! It will get better! I am over 9 years post SCT and going strong.

@alive Thank you so much for sharing your story. It’s great to hear you’re doing well.

I am being worked up for liver GVHD 14 months after my stem cell transplant. I am feeling great, buy my last oncology visit the labs showed very elevated liver enzymes. I was put back on Usidiol and will be having a Fibroscan on Dec. 2nd.
To say I am disappointed is an understatement. I feel and was doing so good and now another hurdle to jump. The 2 hour trip back and forth is putting a tole on my husband who is 13 years older than me. It gets exhausting, but I gave it to God and he will get me through.

@marylou329 If it’s any consolation, I’m 6+ years out from my BMT and this September (couple months ago) was the first time in 6 years that my liver enzymes were all happy!!

My doctor suspected gvhd too and I’d had a liver biopsy a while back. There was no permanent damage but the toll of all the chemo for AML and the transplant took their toll on my liver, making it highly reactive to many things. One of which was taking a daily multi-vitamin. Apparently the extra Vitamin A was enough for my liver to have a tempter tantrum.
So I don’t take supplements of any nature now but do follow the advice I received for keeping my liver happy with eating blueberries, cranberries, etc., and lots of leafy greens like spinach, avocado daily, lean proteins, fish, loads of beans, using olive oil, no alcohol and I drink of 64 to 84oz of water daily. I’ve followed the Mediterranean diet for years but I really amped up the antioxidant fruits and veggies. Not sure what made the change but not taking supplements have helped.
Wishing you well with your next check up. Hopefully your liver will settle down at some point too. Like I said, it took a while. So keep drinking your water and taking the Ursodial. Let me know how your scan turns out from Dec 2.

Do you have any other issues with GVH?

No other GVHD yet, just the elevated liver enzymes. The rest of my blood work is good. I finished Chemo on September 19. I was on a 8 month maintenance dose of Vidaza and Venetoclax. So I have been on some form of chemo since March 2024 until September 19th, 2025.

@marylou329 It’s really great news you don’t have any other gvhd issues. Sending positive vibes your way that this liver issue is a one-off and the numbers come down by your next set of labs. It must feel really amazing to finally be off all the chemo!
One thing I treated myself with post BMT was a full body massage with lymphatic drainage. I swear that cleaned out the last vestiges of chemo and toxins from my body. My labs improved from that point on. Just a thought for you. If nothing else, it’s just sooo relaxing! If you have a massage, make sure you drink plenty of water before and for the day following.

Again, best wishes for your BMB on Dec 2!