jbean
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Hi Ramona,
They did send me home with prednisone script. I am supposed to begin tapering now.
My tryptase did some significant spikes, that is pretty interesting. They did keep ordering the tryptase throughout the process, which goes a long way to illustrate just what goes on with this disease.
I run at a baseline of 20. During the shocking, it went up to 49 (for those of you higher than that, you are my idols, as I can not imagine it coping with it higher than that!). Then, after some meds, just three days later, now I am at 14! I am almost at a normal level. Never been that low before. So we are all going "what the heck?". So, it seems that I blow off with real style, and the switch flips, and it shuts off. Seems like my changes are pretty rapid, hence the reason I feel so AWFUL when it happens.
So now I am trying to figure out what is medication side effect and what is masto. They think my mediators are causing me neurological symptoms.
Now I am on
Gastrcrom 200 mg, 3 X daily Prednisone, 20 mg, been on it a 10 days, now starting to taper down Randine , 2X daily Loartidine, 5 mg morning, 10 mg at night Benedryl as needed (4-6 hrs) for shock symptoms
I totally could NOT tolerate other antihistamines, like Allegra and Zyrtec, made me feel absolutly horrible, even worse. I tried Sinculair, same thing, made me feel tons worse, could not tolerate it.
The reaction seems to initiate at the gastrointestinal tract, can actually feel flushing from there that radiates outwared to my arms and legs, like a warm wave that moves fast when it hits. Sometimes, if I hit it with GI meds first, it shuts it off before it gets bad. I feel this warm rush, then feel like I have to go to the bathroom, a little nausea, and then this HORRID sensation of my skin burning, really strong, on the arms and legs.
I get it most at night, just out of waking from sleep. This is very interesting to me as I used to work in sleep research. It seems to be associated with my sleep cycle somehow, maybe some kind of cirdadian thing going on.
Anyway, the docs told me they actually thought I got my medicine better and faster to myself than waiting for the nurse to answer my call light, so they thought I'd be better at home. Problem is, I live by myself, so it gets pretty scarey. I have to figure out what to do about that.
I am having huge questions about giving the epipen. So far, have not gotten airway closure, I just go tachycardic, hyotensive, and pass out. I was told different things: (1) Give epipen if you are feeling faint (2) Only give epipen if you have airway closure.
So, what's the deal? Now, since I am very medication sensitive, and tachycardic when it hits, epi might through somebody like me into arrythmia, on the other hand, if I pass out and my airway shuts, then how will I get a pen in me? I will have to get more guidance on this subtle, but very important point.
Judging from my reactions thus far, things go up and down quickly. For me, the whole thing is over in 15 -30 minutes. Once I blow off, then I get this crazy muscle shaking that lasts 15 minutes or so, feel cold, and then its all done.
I am awaiting my bone marrow tests. The group doing it is a really good hem/0nc group with new cutting edge testing at their disposal. They want to pull out the mast cells, then do some molecular analysis to see what is genetically upregulated. They want to know just what it is that my cells are putting out, and use that to help guide the meds. I also got the urine collection during that time period. So this is being examined at multiple levels. They are trying to determine if this is just a flare up, or if I now have more mast cell proliferation, and if so, what % of the marrow? I am also going to have upper and lower endoscopy to figure out if there is more extensive mast cell involvment in the gi, as symptoms seem to initiate there. As of three years ago, I did not. They want to know if that has changed.
So that's where it is at right now. But all the meds and mast cell mediators are giving me a lot of awful symptoms and sensations. Like today, I felt low blood pressure in my neck, ears ringing, etc. Then, it sort of subsided. Comes and goes. So does the "burning skin" sensation. I just totally hate how I feel right now, creeps me out. Sometimes, I feel like I am about to drop dead. It's always been like that with me though. I don't get it often, but when I do, it's a major blow out.
I've already lost eight pounds in the last couple of weeks. I am working hard on keeping my weight stable and hydrating. Supplementing my bland diet with Pedialyte, lots of water, and Ensure.
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