Spending the Skin I’ve Built Up

I am noticeably covered in rashes now, with thicker skin that itches and hurts from cracks.  The worst parts are confined to the body and face, but I can see the redness peeking through my legs and thighs layers of skin.  Also, I can feel underneath that the skin isn’t as solid as it was a couple days ago.  That’s something I’m sure everyone with Eczema or other dermatitis skin problems have felt at least once: what others see on the surface isn’t exactly how your skin feels on you.  The skin on the back of my neck is thick and cracking some, so it’s hard to turn my head and also hurts to turn.

Last night I decreased the amount of Cyclosporin yet again to 25mg from 50mg all last week.  But even towards the end of last week, you can see the rashes peeking through more and more until they’ve gotten a foothold and started spreading.   This is all while I’m back on a almost-food-abstinent diet, getting by on just drinking elecare and some beef and potatoes here and there.  I’m am dying for some real food!  But that’s the irony here isn’t it – if I do eat anything else (which are all stuff I’m even more allergic to) my skin would be much worse or maybe even a relapse.

It seems I’m spending through, or using up, much of the layers of skin I’ve build up the last few years with the help of Cyclosporin and the bathing therapies.  While I’m still doing the bathing therapy, that along with the two Histamine combo just doesn’t seem to be enough.

Just over a week ago, while I was winding down the week of 75mg of Cyclosporin, I was actually feeling pretty confident I could get by without it, that this transition to Cellcept, or even nothing at all, was possible.  My doctors had suggested maybe even going a week or two on just the Histamine combo and see how I do.  We also discussed the idea of using the Xolair shot, which has worked well for others like my business partner Shane to reduce his IgE levels.  However, Xolair’s effectiveness, we always thought, wouldn’t be enough to make even a dent in my 20,000 IgE.  The most Xolair may be able to reduce that by is a couple hundred. Maybe 1%.

Maybe Xolair’s still an option, but given how I’m feeling today, I believe I definitely need to get on a healthy dose of CellCept, or some other immunosuppressant if Cellcept doesn’t work.

Been keeping my spirits up by taking on several projects and working a lot.  But this evening as I’m trying to wind down, and wanting to have dinner, I’m having to come back to reality again and just a bit bummed.


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