A few weeks ago, I got my new diagnosis. The Dermatologist put me on long term antibiotics and a cream in hopes that the treatment would take. It just so happened that three days before that (on Friday) my Rheumy put me on a 12 day tapered pack of Prednisone for the flare I had been in for a few weeks. By Monday when I saw the Dermo, it was starting to take effect. I started the antibiotics and was truly hopeful! No new lesions, flare cleared up, and other than the usual munchies, all was going well. Then the prednisone tapered off
Slowly but surely over the last two weeks, everything is coming back. The flare is gradually overtaking everything again. It’s starting the same place as last time- my right middle finger. It’s SO weird. When I close my fists, whether just as reflex, sleeping or even holding something benign like a pencil, the middle finger gets “stuck” closed and trying to open it normally is painful. That means it takes either opening hard or using my other hand to open it. When it does come open, it’s feels like…..when you release a rubber band, but the release of pain is instantaneous. It’s much less painful when it’s straightened. But I digress.
In addition to the flare returning, the blisters are returning too. My back, my chest, my scalp and my face. I am not sure what to do. I am seeing the dermo again on Wednesday morning but the thing that I am not sure about is my scalp.
I seriously considered, before the medications when they told me that heat would exacerbate the blistering, shaving my hair off. If you know me at all, that’s a big, big thing. I have a serious love/hate relationship with my hair. I hate that it’s thin/I love that there’s so much of it. I hate that it’s stick straight/I love that I can do a lot with it. I hate that it takes forever and three days to grow/I love that I can put it up and go when needed. The only time I’ve ever thought about something so drastic as cutting it all off was when I was losing it to Methotrexate. At that time, I freaked out and had it cut really, really short. I had such instant buyer’s remorse that I was this|close to going back inside and having them put in extensions. Instead, I sucked it up and dealt with it for over 2 years while I waited for it to grow back out. For me to even consider it so that is pretty huge.
Now I am back to square 1. My everything itches like mad, especially my head. There are blisters in the same old areas and I am wondering if, with the coming summer, I should give up and shave it so that I can apply the topical cream to it without looking like I haven’t washed my hair is who knows how long. The topical cream seems to be effective in treating the blisters once open so it’s a Catch-22.
On the bright side- and of course there is one, I know that predisone helps a lot. I know that I can throw my hair up until I make my decision, and I know that I have a whopping 19 days I will get a week with my parents, my sisters, their spouses and kiddos and most importantly, my son. I also have hope that by then I can have something, even if it means prednisone long term again, that will put me on the path to feeling human again. And so it goes…..
Hoping this finds you well and with amazing plans for this summer.