Hi everybody! Time for a weekly post-- let's see how long I can keep this up for. If you want to get these posts regularly, make sure you subscribe, on the right hand side or at the bottom. Today marks a week since my last dose of Xolair. I briefly discussed Xolair, or omalizumab, in my last post, but it is what is known as an igE mediator (Wiki page about Xolair here). igE antibodies are the allergic antibodies that respond to standard allergic triggers, like pollens, foods, etc. And although my condition, MCAS, is not a typical igE allergy, it seems to respond through an unknown mechanism. For patients receiving Xolair for standard igE based allergies, they normally only have to get it every 4 weeks, and it lasts in their system for months after each injection. For MCAS patients, again for an unknown reason, it seems to only last 2 weeks or less. For me, this has caused significant problems. I tend to flare around the 1 and 1/2 week point, even on the highest doses of Xolair. Additionally, I feel the effects of Xolair by the next day, which is also generally unusual/unheard of. When I am in that first week/week and a half window, I feel a lot better, and my energy is significantly improved. I generally respond better to epi pens and treatment in general when I do have to use them.
Since I got my injection last Tuesday, things have generally been good. No epi pens, no ER trips. However, I have been having a flare up on and off since Friday, which hasn't been fun. I had some ice cream which was supposed to be safe, but I have a feeling that it was the cookie dough that they put on top that may have been cross contaminated. Ever since then, I have flared each morning. I also started a new supplement, and reduced my steroid (prednisone) dosage, so I think it is a cascade of all three variables at the same time causing me problems. Yesterday, I had my normal saline infusion, and they were able to give me IV Benadryl for my swelling (angioedema) then. Today, the swelling is better, but I am still having some mild throat itching and tongue swelling (minor) that is coming and going. So, its a lazy day in bed again for me, accompanied by the well known Benadryl brain fog. I have to take it easy physically, or I risk triggering mast cell degranulation.
I am still waiting to hear back from the manufacturer about Gleevec, or imatinib, the oral chemotherapy medication that my doctor wants me to try to see if it helps my MCAS (Wiki page about Gleevec here). Gleevec is known as a tyrosine-kinase inhibitor, and is typically used for Leukemia. However, if has been shown at a very low dose to help in quite a few MCAS patients, because of inhibition of the mast cells. Because a generic was only recently released, and the complex mechanism by which it works, it is EXTREMELY expensive, upwards of $140,000 a year-- why I absolutely have to get the financial assistance in order to take the medication. My insurance rejected my request for the medication. I really hope that they are able to approve me for their financial assistance program-- I have heard quite a few success stories about it, and I would love the opportunity to give the medication a try and see if it can bring me some more sustained relief. Fingers crossed for approval! I will post in the links section a blog post written by another MCAS patient about her experience with Gleevec.
I also hope this mini flare ends soon, so I can enjoy my time before the Xolair fully wears off. I have another dose scheduled for a week from today. Anyways, I will post again next week! Have a great week everybody!
No comments:
Post a Comment