Living with GVHD

Hi Dorothy, The new immune system we receive from our donor’s stem cells, can eventually learn to play nicely with all the little problem proteins it encounters in the body of its host (the person receiving the cells). The immune system is the defense system in our bodies and that system is unique to us from the beginning. Blood stem cells mature into the various cells such as red blood, white (immunity) cells and platelets. When they are implanted into the body of a stranger, those stem cells still want to mature so they can go about their normal business. But they are shocked to be in a foreign environment! They tend to look at everything, with the intention to aggressively fend off the invader. Problem is, that invader is now also the host for these new cells. You can see the problem. LOL

But, those cells are also adaptable, with memory as to what is ‘stranger danger’ and what is normal. It takes time for that to happen. Each patient is unique in recovery. For instance, some patients have little to no acute or chronic GVHD from the get-go. More often, people develop some GVHD within the first couple of months after stopping the anti-rejection meds as you saw with your husband after his DLI, which reset his clock. I had to be on anti-rejection meds 2.5 years before I could finally be symptom free. And there are a few patients for which chronic GVHD is a lifetime commitment. That doesn’t happen often anymore with the advances of the newer, preemptive protocol being given at the time of transplant.

In a round about way to answer your question, from my understanding, the worst potential issues arise in the first 100 days with acute GVHD. Chronic GVHD can last longer with patients having symptoms for 2 to 3.5 years. With treatment the symptoms most often disappear completely. After that it's rare to have something new develop but we're to just stay aware of changes in health and then have it checked if it doesn't rectify itself.

Is David still taking the 2.5 mg of prednisone daily?

@loribmt thank you for the excellent information. Yes David is still on 2.5 mgs of prednisone daily.

I was diagnosed with skin GVHD 5 years after my transplant. Fortunately, I responded well to Jakafi, and my doctor is now slowly decreasing my dosage. I am hoping to be completely off the immunosuppressives by the end of this year.

In my understanding, slow tapering is important for keeping GVHD from flaring up again. I am glad prednisone is working for your husband. Make sure that he is walking a lot and moving around in general. Prednisone was awful on my muscles and spine.

The farther away your husband gets from his transplant, the more his new immune system will “play nice”. It’s still very important to let the doctor know immediately if your husband develops any new GVHD symptoms, since it easier to treat it in mild form and not allow it to progress.