It’s been a while since I last shared an update. A lot has happened in my life and around graft vs. host disease. I’ll try my best to keep it positive.
In June, when I last shared, my team had me start 2 additional treatments for the gvhd. The immediate treatment was basiliximab, which isn’t technically designed to treat gvhd, however, anecdotally, patients have reported relief from it. The medication is infused through your catheter or IV and it is a four week process in which you receive one round per week. By the third week, I definitely felt relief and by July, I felt a lot better. Additionally, they had me start the third medication called Rezurock. This is a new medication to the world of gvhd. I liked that it didn’t have very severe side effects compared to the steroids and I was hopeful it would kick in. My APN told me it can take about 3 months to take full effect, so I patiently waited for that to happen. I also want to mention that basiliximab had little to no side effects as well for me.
So between basiliximab, Rezurock, and steroids, my gvhd should definitely be calmed…. I should definitely see improvements, right?
WRONG…soooo, wrong. The good news is that for most of the summer, I felt okay. In July, we saw family and I caught my first tiny cold. Thankfully, I got over it quickly, but it did trigger gvhd and thrush in my mouth. It wasn’t painful, and I had no idea I had it until the doctor checked. For the thrush, I made some dietary changes that successfully healed it. Essentially, I stopped eating about 90% of my dairy consumption. I was only putting milk in my morning cappuccino. I also increased my intake of leafy, green vegetables. My doctor also prescribed a few mouth rinses which included an oral steroid and nystatin, but admittedly I barely used them and didn’t see true results until I stopped dairy.
In August, I came down with a few episodes of diarrhea. To this day, I am not sure what caused it but in that moment, I limited my diet completely and ate very basic foods. When I tried to return to my normal diet, I noticed it flared up again. So around this time, I experimented with going gluten free and slowly began to notice some abdominal relief.
Anytime I introduced gluten again, I had the same symptoms… bloating, gas, needing the bathroom, and just feeling sluggish. So for now, I am gluten free and glad about it!
In mid July, I noticed some discomfort in my right hip. I didn’t think much of it and figured I tripped or something. As time went on though, it didn’t get any better. So, I told my doctor and she ordered an MRI that was scheduled near the end of August.
The Ugly
The MRI showed avascular necrosis (AVN) of both hips. Essentially, the surface of the femoral head is deteriorating and slowly collapsing. The only fix is a hip replacement…. a double hip replacement.
I saw three doctors to get their opinions and sadly, they all said the same thing. But, they were all very optimistic about the success of hip replacements. It was crushing news and I felt completely blindsided. I didn’t know this was a side effect of steroids.
The Bad
In September, my skin rashes started up again. They weren’t as bothersome as the June flare up, and I carried on with life as much as possible. We had our first family vacation with my brother in law and his family in New Hampshire which felt so satisfying and wholesome.
Upon hearing the news of my AVN, it became very clear the need to get off of the steroids asap. Not everyone gets AVN from steroids, however, it can affect other joints.
But how? How can I finally be free of this terrible drug? ENTER – extracorporeal photopheresis!
The Good-ish
Extracorporeal photopheresis is a procedure in which blood is removed and then the white blood cells are extracted and treated with medication and UV lights, then returned to body. It is generally considered a gentler treatment option for people with gvhd. However, it is time consuming. The procedure typically happens twice a week and takes 2-3 months to begin working. This is because only about 10% of the blood is taken at a time.
Had I known this was an option back in June, I would have advocated to start this treatment sooner. But, God is sovereign.
I don’t need to know why, but there is a reason why God had me start it in the fall. So in October, our daughter started daycare two days a week so that I can get my photopheresis done. About a week in to daycare (as expected), she caught a cold and we caught it from her. At that point I was on a lower dose of steroids and my body was seemingly able to fight off the cold. However, my rashes worsened that month and so I went up on my steroids and in doing so, my cold returned.
The second half of October consisted of itchy rashes and rhinovirus. The combination was cyclical. The more steroids, the increase in cold, and with the increase in cold, also revved up my body’s immune system which increased the gvhd flare ups. Bottom line: don’t get sick!
My rashes were particularly bad in October and November, which has also consisted of us house hunting and packing up our house. It’s definitely safe to say that stress contributed greatly to the rashes. Since my rashes became such a nuisance, my doctor decided to stop the Rezurock and switch to a different medication called Jakofi. Hopefully, I can provide a positive update down the road about Jakofi.