I'm just now getting caught up on this. What an awful weekend for you. I agree with what Rob said - things always seem to happen on Friday, and then we have to worry our way through a weekend.
So, if it's an allergic reaction, why is it still getting worse with the irritant (your meds) being gone?
I hope that some doc is smart enough to get this figured out soon.
Hang in there, friend!
It's finally slowed down a bit, and if I don't eat, I feel OK. Just sort-of hungry. I don't really feel any hunger pain (pang??), which is worrisome for me, since I *love* to eat... But if I eat, I'll start with the wierd burping, feeling worse with headache & nausea, etc., and itching, still... not as many new sores this morning, but do look a site, with skin peeling in places it really shouldn't, and I've got a "purple" belly and arms. Barnie the dinasaur had a green belly, and was purple everywhere else... Not me. I'm a combination of pink, hot pink, purple & white (the peeling skin), with brown hair and eyes... Anyway, I think my liver is backed-up and not functioning for the digestion side of things the way it should. I haven't a clue as to why I'm still reacting. But here I sit, still by the phone, waiting on the doctor's office. Still... I've called them twice today and left messages. I could make excuses about them having changed computer systems a few weeks ago and stuff like that, but... great doctor, but...
Oh my goodness I hope you have found something out by now!
I just wanted to mention that I do think a gluten free diet did help me some with my lupus.. Before I knew I had lupus lol. I was dx was Graves disease in 2007 and then Celiacs disease in 2008 when it was really more than likely the lupus all along. I did go gluten free from 2008 until about 6mos ago when I got my lupus diagnoses and also had some stomach biopsies confirming I probably never had Celiacs disease. BUT from 2008 up until the end of 2011 when I had my son, as far as I can remember, I really had no symptoms. No rashes, no inflammation, no weird mystery stuff.... So I have no idea if it would work for you at ALL but it might be worth a shot?? There are some really good gluten free pizzas I can recommend!
Thinking about you... Any news yet?
Wow. I must have dreamt that I posted an update... that's not scary. My brain fog is sort-of like it used to be, only different. Anyway, I'm still mostly covered with this stuff, but I'm not throwing very many new sores, my skin looks like my current whl animal kingdom animal (rattlesnake) is getting a new skin, with all sorts of wierd wrinkles and peelings... If it weren't on me, it'd almost be "interesting", but it's not... lol - I'm still "multi-colored", with the some of the purple areas having turned to black, some to a green, some to white, some still bright red (almost hot pink, but not quite anymore), some dull red, etc., but definite signs of healing. As for the digestion, I still can't hardly eat a "meal", but I do "nibble" throughout the day, and can do meat protien again, without too much discomfort...
The biopsy results (taken 9 days ago) finally came back Tuesday evening, almost 3 hours after I posted above. "hypersensitive allergic reaction of idiopathic nature, most likely from medication" was the gist of it. I'll discuss those results with the derma guy tomorrow morning. The bloodwork that had a "Rush!" on it Friday afternoon, came back Wednesday. "High" white blood count (barely past the upper limit), of the one type (I forget the guilty ones) which correlates to the allergic reaction. Lowered level of the other kind of white blood cells, which is a naturally occurring thang, since the other one is elevated... None of the stuff that would make one worry in that regard. I am very low on iron again, though. B12 level is low, but up from where it was (another suspect is those injections I get). Elevated liver enzymes, almost to the upper limit on a couple, a few other odds and ends high & low, which goes along with the liver enzymes, etc., etc., etc. So, it looks like a plain ole allergic reaction. To what, they don't know. Why it's lastest so long, they don't know. However - they do now suspect that since I didn't "slow down" in the reaction until I went "cold turkey" with my other meds, they're thinking that something in my "regular" stuff is the "base" antagonist, and that the levels never got high enough enough until my liver reacted the way it did, from either the plaquenil (maybe), or the clonazepam (stronger maybe). Basically speaking, they don't know what happened or why. I don't think we'll talk about much tomorrow, other than "Hi, how ya doin'? You look better. Call if you have any further issues" from the derma guy. There isn't much he *can* do anyway.
Now, the interesting doctor to see will be the hematologist come Monday. I was scheduled to just go in and get an IVIG infusion, but since a skin reaction like mine usually involves the IgM component of a person's blood, they've put the IVIG on hold for now, and I'll just have "a few more" blood tests added to the usual battery of 4 vials, and they'll compare last Friday's draw to Monday's. They will include the total immunoglobulin count, and each individual one (IgA, IgE, etc.). The actual lab is right there on site, so they'll have the results just little bit after the draw. The conversation afterwards might have to get recorded, so I don't forget anything, especially if this fog is still with me... My wife is trying to get off work to go with me, else we'll have to draft the "services" of the in-laws, who we lean on too much...
And as to gluten-free E42brchick, we are an "almost" gluten-free family. "Almost" dairy-free also. My 10 year old has asperger's (autism spectrum, until the government changes the rules), and it *really* helps with him to avoid them also (we're both "intolerant" of gluten, but not celiac). Since I've got CVID, I'm what they call a "mal-absorbtion" person, and going gluten-free helps with that, and with the IBS stuff. I also have to use probiotics (steve.b's favorite "supplement" also). I can't remember the name of the gluten-free crust mix we use, but it is a good one. Does a nice "crunch" in a thin crust. For a while there, we didn't use cheese on our pizzas, but were trying that "fake" stuff made from soy, then we discovered that the 10 year old and I are both *allergic* to soy, ho boy. Didn't take long to figure that one out. So, we use "hard" cheeses instead, which are supposedly not as "bad" for you. When I do gluten (can you say "cheeseburger"?? - the bun), I can feel a difference, but so long as I don't over-do it, I'm usually OK. In other words, I can't eat regular pizza and cheeseburgers everyday... It keeps the systemic inflammation down if I avoid it, and I'll feel better because of that.
there is something special about motzorella cheese.
Originally Posted by jmail
the proccess of making it changes the chemical composition.
it is not considered a dairy by most diatitions.
it is still good for most of us.
might be worth looking into.
i use it as my main cheese now.
jmail, I have been on a family vacation for a while and am just now reading all this - so sorry!!!! What a horrible ride you've been on...and what a great, funny attitude you keep up... :-)
Well dang...if you can't take any meds, what the heck are they gonna do about the Lupus? I think you need Dr. House...even if he thinks it's NEVER Lupus, LOL...
Like you, I have a kid who is gluten-intolerant, and I found out recently I am too, though because it's not strictly Celiac, I am not totally strict - I eat regular soy sauce, pick croutons out of salad instead of worrying about stray crumbs, etc). AND I have a problem with dairy - which I didn't ever realize until I went off of it, and then ate it again - HOO-BOY, that was ugly! Sadly, I am DEFINITELY sensitive to dairy! It was bad enough when they took away my regular, gluten-y, chewy-bubbly-crust pizza, but now I can't even eat the "fake" stuff with real cheese?! Oh - and also like you, I don't do so well with large amounts of soy - so no SOY cheese. Fortunately, I seem to be okay with hard cheeses like parmesan, so at least I can have SOMETHING on the durn fake pizza. And goat cheese seems to be okay, though I do get sick of it pretty fast.
I feel your pain - at least in that one area. Which is nothing, compared to the skin issue - but at least ya got some company in the pizza department....
(((((gentle hugs...)))))) - feel better soon.....
I'll still do ice cream on occasion, but usually not out in public, due to my "reaction" (shall we say)... *Everyone* knows I had ice cream within about 30 minutes - tic. PIZZA! I *really* miss my Imo's in St. Louis. When you said "extra cheese", my golly. They use provel cheese, which is a cheddar/swiss/provolone combination, so I'm *sure* I could rationalize my way into eating an Imo's pizza... lol - I gorfet what it is steve.b about the mozzarella cheese that I'm supposed to avoid it, but it's an "uncured", or "soft" cheese. The cheddar that I can eat (in 'moderation', of course) is the "new" cheddar. It's an "uncured" cheese, so is usually white in color. Provolone is similar. I haven't a clue why swiss is OK, since it's *definitely* a "cured" or "aged" cheese... Maybe it's got something to do with the holes... I'm easily confused by some of the dietary "rules", and I have to consult my dietician papers quite often. Tell ya what, not to say anything bad about anybody, but dieticians can be *very* strict people... lol
So anyway, I just got back from the dermatologist's office, and as expected, he calls this a "hypersensitive reaction to a drug or drugs of unknown identity". What I'm supposed to do now, since I'm starting to clear up a bit, is to start re-introducing my meds, one at a time. The first one I start with today is the topical cream he gave me with the steroids in it. I've put it on the left arm only, and if there's not reaction by tomorrow, go all over with it. Reaction time with a cream he says should be "almost immediately" (doctor termonology). Monday is now a consult with the hematologist, no IVIG treatment until at least next week, and preferably the week after, so that I can re-start my cytomel for the thyroid and see if anything happens. I want to skip the metformin, lisinopril & fluticasone, and go directly to plaquenil next. That stuff helped *SO* much with my symptoms, it was almost unreal. From what I've read, there are way more reactions to those other three drugs than to plaq. Besides, if I do react, we'll know sooner - *and* - I can try the brand-name stuff sooner to find out about it... Now to just figure out what all the internal stuff I've been experiencing are... and this is the worst brain fog I've had in a *long* time. Better get me nap in...
Praying for you I hope that everything turns out ok.
OK, we can change the title of the thread to "Not worried as much" now... sort-of. I just got back from the doc's office (yes, again... sigh). I've had my right leg elevated for several days now, and the swelling won't go down. The left is fine. Most of the rash is gone, except on the right calf. I still look a sight, what with all this skin peeling. Sort of like a really weird sunburn peel, only stranger... Anyway, when I went to the hematologist yesterday, she had all the reports from the pcp, dermatologist, and the labs & reports, and all the docs are in agreement (including they rheumy) that we'll re-introduce the drugs one at a time, with 7-10 days between each... Then she sees my leg and goes almost ballistic "were you planning on telling me about *that*?" Of course I was. "That looks like deep vein thrombosis" (or whatever it was she said). "We need to do a venous doppler (a who-what??) stat!" So off I go to the hospital for this "stat" test. And I sat there. And I sat there... by the time they got me back there for the test, my calf looked like a balloon. I'd never had an ultrasound hurt before. But this one did, because of the leg swelling... lol - The test was negative.
So I ended up back at the pcp today. They looked at it and said "cellulitis", so I got me an antibiotic shot, and an anti-biotic presription, and will be off work at least another 48 hours they said... Infection probably got in through the skin during the erythema multiforme major whatevericus stuff. Now I'll have to get me an OK from the company's medical officer before I can go back in to work, so that 48 hours turns into "the rest of the week"... sigh. Anyway, other bloodwork results came in, and now I'll have to do another 24 hour urine thingie, and do follow-up blood work in a few weeks, so I'll probably do a me new thread and maybe ask some of you kidney experts a question or two about albumin, chloride (chlorine??), the math involved in calculating some ratio, etc., and a few other thangs in a week or two, if I don't "rebound" in that department...