So this new year brings new, and hopefully successful, treatments. I am starting Lanilomide soon, which is a derivative of Thalidomide. Shortly after that I hope to get a stem cell transplant. I read an article that stated that stem cell transplants are going to be "the treatment" for BD. Let's pray that we can find a way to fund this super expensive treatment. I hope that my rheumy can find grant money to utilize it for research since I have a severe case of refractory behcet's disease. Lucky me!
I had a horrible skin ulcer on the lower quadrant of my left leg...I guess one would call that an ankle.....Lol. I am happy to report that after a long 9 months it has healed!!! It has left a nasty battle wound that looks quite similar to a burn scar, but it is no longer a yucky open wound. Every once in a while it will hurt a bit but I attribute that to nerve pain. I have a few small skin ulcers. I also have really bad throat ulcers and mouth ulcers. My INR has been fluctuating like crazy so I have been unable to get my oral surgery. Therefore, we have had to adjust my Coumadin doses every couple of weeks. I have been suffering from terrible fatigue. I can barely walk for a few minutes without feeling the exhaustion. It's so hard because I used to be so active. I feel lazy, but then remind myself that it's the disease and not me. Still hard to come to terms with.
I hope this year will be a great year for myself and my fellow BD friends!!!!!!
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