A Never Ending Battle

Love the skin you’re in they say. I’m trying my best but right now, I just can’t. Shortly after my Hematologist gave me the ok to wean off of the immunosuppressant (Jakavi) my CGVHD flared up again. Quite possibly the worst I have ever seen/felt. I am feeling it the most in my shoulders and back. I have lost my range of motion. It seems to be affecting me in a much more subcutaneous way. I can feel the thickening of my skin, covering my torso, neck and arms. Contracting tendons are making it harder to move. This band like restriction runs along both sides of my torso and into my underarms. It becomes extremely itchy if I don’t constantly apply moisturizer, specifically Aveeno or coconut oil, anything else seems to irritate. The feeling of my bra rubbing against my skin is painful enough to leave me going braless most of the time. When I lie down to sleep at night, the rubbing of the blankets on my skin is unbearable at times. It hurts to move around and get comfortable. I’ve been crying myself to sleep. Since I noticed these changes I’ve increased my daily dose of Jakavi once again, hoping for some relief. The relief isn’t coming as quickly as it did when I first started Jakavi. I’m seeing my Hematologist in a couple weeks. I know he will advise me to increase my dose so I took it upon myself to get a head start. I was hoping for some sort of improvement by now. I find myself searching for answers on the internet. Looking for an answer as to why this is happening to me at almost 8 years post transplant. Is this normal? Is this something that will ever go away or will I be dealing with this for the rest of my life? Is the restricting/thickening skin going to continue to get worse? Maybe I am meant to be on immunosuppressants for the rest of my life. The tightness and thickness around my bra line and stomach affects my breathing. When I try to stretch my arms and shoulders it feels like my skin is ripping apart. I just don’t know what to do anymore. Every time summer rolls around I dread the thought of having to find cute clothes that hide my skin but also keep me cool. I’m so self conscious about it, I hate when I catch people staring. I worry about skin cancer. I check for new or suspicious spots often. I’ve noticed a few spots that crust over but never heal fully. There is a spot on my hairline that occasionally breaks open and bleeds. It has changed colour and shape so I will definitely be bringing that up at my next appointment. For the last couple years my skin has been somewhat under control so I’m dreading having to see my Hematologist and tell him the bad news. I think I’ve tried just about every treatment method. What else is there. There are a few newer drugs I’ve read about that I haven’t tried, but that all depends on their availability and cost. Wish me luck!