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.





You are the bravest and most inspiring strong lady! I’m just as excited for you as you are. You never cease to amaze me my darling❤
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Candace, I’m so glad that you are finally getting some relief. I pray that the new drug will continue to give you improvement.
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Candace- Wow, what a challenging journey! Sending you lots of love and prayers for continued healing and beautiful skin and a body free from pain and a super-duper happy heart!
Be well, lovely miracle women!!!
Andy
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Hi Candace…my name is Marti and live in the States (Atlanta). I admire you for being completely honest about you are going through…an AML and stem cell transplant changes you in more ways than we want! I’m glad you are feeling better on the clinical trial drug. The skin hyperpigmentation does fade but it’s taking alot longer than i expected! I had to start on imbrutinib for gvhd of muscles and joints which was approved by the FDA for cgvhd a couple years ago. I completely and fully understand what you are going through…keep moving and remain hopeful.
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