I was very reluctant to take these photos let alone share them with anybody. I have been battling with chronic GVHD of the skin for close to 2 years now. After trying just about every medication/ treatment option with no relief, I think it’s safe to say Ruxolitinib is helping!

I have been taking 10mg/ day for 3 weeks. I have noticed a huge change in my skin already. My NP informed me that I most likely wouldn’t see any improvement for at least 3 months. So when I saw her 2 weeks in to follow up, she was amazed to say the least. The texture and tightness has improved 50%. My skin isn’t as red and sore to touch. The pigmentation is unchanged but with more time I am optimistic that it will improve. I just feel better! My joints don’t feel as constricted and I am less fatigued. This is a huge relief. I was nervous to start this new “chemotherapy” trial drug for fear that it may cause unwanted side effects. So far so good. My WBCs and platelets are low which makes me more susceptible to infections, bleeding/ bruising which is nothing new to me. I’ve been on prednisone and immunosuppressants for 5 years now.

I know it’s only been a few weeks but I am beyond excited that I am finally starting to get some relief. This drug is still going through clinical trials which is why it took so long for me to begin treatment. The drug is now FDA approved for treating GvHD which makes it free, a drug that would of cost me $3,000/month.

It’s difficult to go through something that the doctors don’t always have the answers for. Trying a medication or treatment that is experimental is terrifying. You put your trust in your doctors and just hope it works. Something is finally helping and I’m so happy and optimistic I could cry.