OK, now I'm worried...
Hey guys, a sort-of update of sorts... I had that visit to the ER a week ago Sunday, where I took the wife out to breakfast at Micky D's on the way there, 'member? An' I had a rash from what we think was a drug reaction? An' a follow-up next day with the pcp, an' a gatherin' of the heads in their office. An' I got in to the skin guy the other day, and he says "reasonably certain that it's a drug reaction" and gave me more steroids and a steroid cream... Well, I haven't hardly eaten anything lately, what with the insides all messed-up, like the skin, and I don't hardly digest it anyway, and just sit there and moan instead, 'cause my liver is complainin' an' all... Well, today they got me in to see the pcp for follow-up, and she doesn't like it at all. "Stop all meds except the synthroid, and we'll reduce that a bit also. Stop all supplements. Only use your rescue inhaler, if you can get by with that, else use the symbicort if you have to, to open up. You're still reacting to something." I asked: "even the steroids" she answered "Yes. Now. Immediately. No steroid cream even." She says I'm doing Erythema Multiforme Major at the least, and might even be doing a Stevens-Johnson Syndrome thang... I looked 'em up on the net here just now... Wow! scary skin stuff. The EMM (I didn't see an "official" medical acronym for that, so I just "coined" that one... tic) sounds a pinch better, though I still don't like it. My skin is dying and peeling in several places (mangy mutt... lol), and hurts like H E double-Pete, with this shtinking, crawling itch with it. btw, I now know what the phrase "pruritic rash" means... It itches so bad it hurts... lol - Did you know that there isn't really any medical "treatment" for this stuff?... You'd think someone would have invented something for this... Oh well. It's like someone's burning your skin with fire from the inside out.
Anyway, they took more blood from me today than they did when we did chemo & radiation tests for my cancer way back when. I feel better after the blood-letting... tic. So they've courriered the blood (guy drove them in a truck) to the lab (I'm sure I'll get to pay for the expedited shipping), and now I'm back at home, "sitting by the phone, waiting for my baby to call"... No, wait, wrong song... waiting for "doctor doctor, give me the news"... Wait, here it is, song N3 on the jukebox... waiting for the doc to call. She said it'd probably be early this evening for the labs & she's gonna call another rheumy she knows and consult, along with my rheumy and the hematologist, AND the dermatologist... phew! Good thing she's got 3 people at the desks to make phone calls. There wasn't any word yet on the skin biopsy from Monday (Tuesday? what day is it today?...) yet. Anyway, she says my throat is constricted from this... like, I could close off and not be able to breath kind a thang, and to pay attention to my symptoms *real* close. No gluten, no dairy, nothing I know I'm allergic to (like shellfish)... Take a benedryl and remain calm... OK, sure. I can do that... Calm, eh? btw, no need for a liver biopsy, it's not enlarged feeling to her. They'll do an ultrasound this evening if my numbers are off again.
Calm. So I wait. Calm. If any of you is prayin' folk, I'd sure appreciate some help there... still smilin' tho |;^)
Well, I fell asleep last night on the couch, and the wife let me be. The doc's office called back just after 7pm my time, and they hadn't gotten any results back, so the girl was leaving (I call her a "girl", and she's in her twenties... I'm gettin' old). (Why'd they make her stay that late on a Friday night?)... Anyway, it'll be Monday morning I guess. In the meantime, the shtinking rash is still "blooming", tho it seems to be slowing. Wierd stuff. No meds (doctor's orders) for over 24 hours now, except my synthroid, minimal food, and wonder of wonders, my throat is relaxing a bit... So there is improvement.
Jeez, that's alot of stuff to deal with! I wish had better advice than just "take it easy", but I don't.
So take it easy,
wow that is alot to deal with!
As Rob so eloquently said take it easy!
You mention rashes will they at least let you use something like aloe vera to at least releave some of the burning/itching?
Last fall I was very ill with a fever of "unknown origin" (thats when I learned how they obtain core-body temp) So they had me stop all meds
put me on heavy anti-biotics(thats when I learned about c-diff). that didn't help so they stopped all meds. after a couple of weeks and much testing it stopped all by itself and I was slowly re-introduced to plaquenol and held off on anything else for a few months(now I'm on cellcept)
They still don't know why I was so ill-best quess was reaction to imuran or the flu shot they insisted I needed.
I certainly feel for you-waiting and not knowing is the hardest part-for this to come to a head on friday and have to wait all weekend for results would drive me nuts!
Take Care and I will remember you in my prayers Niall
And without fail, these things always seem to culminate late in the week, with answers needed the most on a Friday afternoon. At least it's not a three-day weekend.
Originally Posted by n.mac
Booo-ah-ha-ha-ha-ha!!! Yeah, the insurance cancellation notice usually comes on the holiday weekends... lololol
"Core temperature" sounds so inocuous, don't it, n.mac?... lol - I was introduced to that with the thyroid tests they did... "hoo doggies, that tickles"... I'm not sure I remember anything about c-diff, and I don't think I want to... the correct medical term for "unknown origin" is "idiopathic"... sort of like a concatation of "idiot" and "psychopathic", combined into one word that says it all: "We don't know who, what, when, where, why or how"...
I've used the steroid cream the derma gave me, even if it *does* cause more issues. It at least got the itch and pain to calm down. I also ate a slice of pizza. I couldn't help it. I opened the fridge door to get something else out, and the pizza fell. It would have hit the floor if I wouldn't have intervened... So I ate it. It was good. I feel better. I really don't think it's got a thing to do with gluten, tho I'm sure the gluten doesn't help with the inflamation... Wierd thing is, my blood sugar came down, along with my stress level. Comfort food. Does it everytime... lol
So n.mac, how long did your rash "bloom"? I'm still "creating" new "sores", 12 days later. 'Course, I'd only been "clean" for about 32 hours before I pigged on the pizza... |;^)
btw, they *insisted* I get a flu AND a pneumonia shot this last fall, and then I started B12 injections last spring... suspects? maybe... but so is the whole medicine cabinet... hoodunnit?
I swear if it is t one thing it is another! Please keep us posted!
Fifteen days and it's still "blooming", making new sores... It's back into the sinuses, face, hands, sides, etc. You'd think it'd run out of places, wouldn't you? I think it's going around a 2nd time, to make sure it's got everything "covered"... I want more pizza... sigh... 'bout 12 more hours and there'll be people at all my doctors' offices...
Nothing more frustrating then waiting for the docs office to open! I am thinking about you
Originally Posted by jmail
Well... same ole same ole... waiting some more now. They got the biopsy results, and as expected "consistent with hypersensitive drug reaction; of idiopathic origin"... The blood work has NOT come through, so now it's tomorrow... Thanks for thinking of me guys. I feel like $#!P, turning purple in places, still doing "new" spots, etc., and *starving* to *death*!!! I want PIZZA!!! and something to *stop* this dad-blamed ITCH!!! lol - doing OK, but this is about miserable. I wouldn't wish this on my worst enemy. Right now, I couldn't think of a "worst enemy" anyway, other than shtinking lupus... hmmm..... "I wish...."