Since my last update, my GVHD has improved significantly. Praise God.
My Jakofi Experience
Around the middle/end of November I began taking Jakofi. Around this time, my GVHD was truly awful. I can tell you without a doubt in my mind, GVHD flares up with stress. Then, a few weeks before Thanksgiving, COVID hit our household. So between packing up our house to move AND Covid, my skin looked terrible. Very raised, red blotches and spots all over my upper body and my feet. My doctor said Jakofi has shown promise for many people, so I figured at this point, why not try it. Meanwhile, I was continuing with photopheresis and still taking 16 mgs of medrol.
One evening, near the beginning of December, I felt very off. My blood pressure tanked, and I seemingly passed out which was a very alarming experience for my family. They called an ambulance and I was brought to a local hospital. By the time I arrived to the ER, I felt better. They took my blood work and vitals which all came back normal. A few days later, I woke up with an aura and migraine (very unusual for me). Since then, I stopped taking the Jakofi. I am not 100% certain Jak was the cause, but it didn't sit right to continue taking it.
This was at the height of my stress near the time we closed on our townhouse and had to finish packing up the house. In addition, I was still recovering from Covid.
Covid-19 and Remdesivir
Once they found out I had Covid, they immediately wanted me to receive three rounds of Remdesivir. This variant of Covid didn't seem too severe - headache, chills, fever, body aches, sore throat, runny nose - but since I'm on immunosuppressants, they wanted me to receive Remdesivir as soon as possible. Remdesivir worked great! I felt an immediate relief of my symptoms the next day. It essentially stopped Covid in its tracks. However, I was unable to resume photopheresis for several weeks because I must have 2 negative Covid tests. For me, Covid stayed positive for about 3-4 weeks.
GVHD Improvements and Abatacept
Miraculously, at the beginning of December my skin finally began improving. At this time, I had resumed photopheresis and continued tapering my dose of medrol. I'm not sure what the solution has been, but I am guessing photo has finally kicked in.
In an effort to significantly reduce my steroids (in preparation for my hip replacement surgery), my doctor wanted to try another option called Abatacept. It is an infusion of medication originally designed for people with rheumatoid arthritis. So since then, I've had a few infusions of Abatacept. At this point I am not sure what's working more: photopheresis or Abatacept, but I'm so glad and grateful.