the beginning
pic 1: the beginning - Behçet's UK
pic 1
Written by
Rlopeznyc
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2 Replies
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Oh Rob I just can't begin to understand how painful these lesions must be.
I saw your post about being a tramadol zombie. I use patches for pain relief and they come in varying strengths. if you type patches in the search box top right of the page you will see a couple of threads about them. I can never remember the name of them.
I just hope now you have a diagnosis things will be brought under control for you.
At least you have found a place to come and chat with people who understand.
I don't personally have lesions like this but there are others who I am sure will respond.
Love Jill x
I used to get lesions like this on my face (down whole cheek or chin, across forehead and eyes, etc), legs and buttocks, & occasionally, slightly smaller ones in my ear. I don't know why this particular type skipped most other locations. I haven't had many this bad since 2009. My impression was they finally slowed down with Colcrys .6 mg twice daily, plus about a year on immunosuppressive medication continuously (back then it was Plaquenil, though now I am on Remicade instead). Occasional high dose blasts of steroids helped get things under control, too, I think (I couldn't take steroids all the time back then due to agitation from prednisone, though now I have to take steroids daily no matter what for adrenal insufficiency). I know how miserable they are and my heart goes out to you. The good news I'd they eventually subsided for me. I also use patches to control the pain from my Behcets. They are called Fentanyl transdermal patches, changed every 48 hrs. In 10 years of trying most everything, they have helped my pain the most with the least side effects. I still have many struggles, but I even returned to college recently (to retrain) and got a 4.0 last quarter, so I know my medication is not making me a zombie (a fear I had). I can still think, and can function part-time, which is a big improvement. I will keep you in my prayers that you will find what works for you soon and get some relief.
