Hi everybody, I hope you had a great weekend! Sorry it has been a while since I last posted. I have been working on a cupcake rug hooking kit, which I just finished today! I have been in a moderate flare for the last 2-3 weeks, but I think I may be finally on the tail end of it. It has been requiring Benadryl pretty much daily, but no EpiPens or ER (Thanks Xolair). I also have been working on the online courses I am taking so I can still graduate with my class next Spring. I am currently taking an Educational Psychology course, and beginning at the end of March, I will be starting a class about contemporary health issues, and one about special education. I am really excited for both, as they are not topics that I could ordinarily take course in at Pitzer. I was pleasantly surprised that I was able to find a program that I was able to get credit approval for, and so far, the work load has been VERY manageable.
More good news today-- I got a call this morning from my allergist's office, located in San Diego. Last Friday, the doctor spoke to my insurance company, and was able to get them to approve the generic Gleevec medication for me! This is the oral chemotherapy drug, also known as imatinib, which has shown some promising results in many MCAS patients (Wikipedia link here). I will be starting it tomorrow, assuming the shipment comes in the morning.From the people I have spoken with who have taken this medication, they have all said that they knew pretty quickly if they tolerate the medication, and if it will help, sometimes even within a week. I will start off with 100 mg a day for a week, have some lab tests done, and then increase it to 200 mg. I am not expected to have any major side effects, including hair loss. I have been really self conscious of my appearance, as the prednisone I have been having to take daily not only has immunosuppressant side effects, but also gives me a "moon face" and excessive body hair growth (I say I feel like a fat hairy yeti). With starting the Gleevec, I do have to have my blood cell and liver counts monitored, and continue to be careful to not get sick, so if you have a virus, please keep your distance! I will not be offended if you have to cancel because you're feeling under the weather.
I am optimistic that this medication will help, and I really hope that it is stabilizing. Only time will tell, and my fingers will remain crossed. I am really relieved that the insurance approved it, and looking forward to seeing the medication's effects. Regardless, I am scheduled to get Xolair next Tuesday. In a month, I still have my appointment scheduled at the Stanford Dysautonomia Clinic, and I will be booking appointments tomorrow to follow up with the mast cell doctor and the neurologist who diagnosed me with EDS and POTS. I will keep you all posted on how I do with the Gleevec!
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