Finally, some relief!

Hi everybody! I hope you had a lovely rainy week! Good news to report for this week-- I am finally starting to get some relief! Last week, I mentioned that I thought that I was reacting to the Gleevec, since I was having symptoms twice a day every time I took the medication. I heard back from my Mast Cell Specialist mid last week, and they gave me permission to try to soak the coating off the medication (shout out to those of you online who recommended asking about this!) Before taking the medication, I now place the pill in a small amount of water at room temperature, and stir until the coating appears to be mostly off. It is kind of a pain, but a sacrifice I am more than willing to make!

Since I began this new soaking protocol, I have had a maximum of 25 mg of Benadryl a day, which is a record for me! I haven't had that little Benadryl a day in months, and I am even due for Xolair on Wednesday. I have been a little more symptomatic today, but now I am just complaining too easily!

Now, for this week, tomorrow I have a day off from the Infusion Center because of the holiday. On Tuesday, I have the appointment at Stanford's Dysautonomia Clinic, which I have been waiting a while on. My POTS has been largely under control unless I am in a Mast Cell Flare, so I am not sure if the testing will show anything. Saline infusions three times a week and a medication called Corlanor have been keeping my heart rate under control, when both standing and sitting (for the most part). Regardless, this is a good appointment to have, and it can't hurt to get another opinion to make sure we are on the right track and protocol.

My next big appointment after that isn't until March 10th, which is back in San Diego with my mast cell specialist. This appointment will be to discuss the Gleevec, see how it is working, and discuss the game plan from there. Right now, my main question for that appointment is to see if there is a way to get the Gleevec compounded, or if I should try another generic to see if I can avoid the soaking protocol, but again, as long as I am getting some relief from the medication, I will happily deal with the soaking.

It has been really nice to be able to finally do a positive update with some relief and encouraging news! I hope updates to come are all like this :) Have a fantastic week everybody!