Chronic GVHD at 11 months post sct

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.