I mentioned yesterday that, to my ENT I spoke my standard answer for runny/stuffy noses. It's allergies.
Well, I should know by now that it's never allergies, it's never been allergies and I hope that one day it will actually be allergies.
If you can't guess, my rheumy, whom I saw today went... sorry, you are not having allergies. Your nose was swollen, your hand was and still is swollen, headaches, roaming body fevers. How much Prednisone are you taking?
Turns out that, as I lowered my dose of Prednisone, the methotrexate was not strong enough to take over. So now they are putting me on a stronger chemo, that is if my blood test comes back positive for the enzyme needed to take this chemo.
Yes, a diagnosis with most types of vasculitis come with a crash course, first hand learning experience in various forms of chemo. Each type of vasculitis have different symptoms, and each person reacts to their type of vasculitis different than someone else with the same type. To simplify, I have Wegner's, a type of vasculitis with certain major areas that it hits but it can also include other areas (this is why it is one form of systemic vasculitis), another Weggie (person with Wegner's) can have different organ involvement and can respond differently to the same type of chemo that I am on. Some people also have one flare up their entire life, one round of chemo and their done, other people have a roller coaster of flair ups and remission and are on and off chemo for the rest of their lives, still other people will never have a strong flair up, but never have it completely go away either.
Treating these diseases seem to be very hit or miss. Sometimes the treatments just don't seem to have any follow through!
So, mine seemed to be responding to the methotrexate, but now it's not. My two options are Immuran, and if I don't have the enzyme (if you take it without the enzyme you end up in the hospital which is all sorts of no good) or something else that I would have to get through IV (my rheumy didn't say what this one was). This also means that I don't get to move on to only seeing the rheumy every other month. I have to come back even sooner!
No, it wasn't allergies. Yes, I still have hope that one day it will be!