I had a really horrible experience in the middle of the night last night, a few hours after very light drinking! One beer with a salmon dinner at 9, then one greyhound (vodka & fresh-squeezed grapefruit… Maybe the juice did it? None of my meds contraindicated either one!)
I hadn’t been drinking at all for two weeks following my GI endoscopy (Aug 6), and only very lightly most of the time in the last 5 months of being sick, except the week of my birthday in July, which also happened to be my week of low-dose methylprednisolone! I knew this was a little risky, so I started slow and after noticing no issue, drank more at my party that Sat, like 3 or 4 drinks that night instead of my typical one or two. I guess I was pretty wrecked the next day, but I figured that was from a whole day of sun and dancing and hosting a party! In general I felt great that week, and was drinking at least a little almost each day for the whole week… People were buying 
That was right after starting plaquenil, my only new ongoing med, with minor consequences if any. But last night was a nightmare!
Around when I got home at midnight, after a big, rushed carb-y snack cause I was feeling voraciously hungry (often happens if I have an irritated stomach, actually), I felt nauseous and dizzy, like I had the spins from heavy drinking, but no sense of even slight intoxication. It would’ve been very welcome to take the edge off of what followed! By an hour later of staying in a comfortable position reading (lying down made it worse, just like the drunken spins), it got a lot worse. Flushed up in my usual spots (malar+forehead+chest) and got dizzier and numbness in my hands and feet, raynaud’s and then pain in my wrists (worst) and entire arms (outside surface, as in the parts that tan, as my usual arm and leg pain is distributed.) my nausea was at least as severe as times I have been vomiting, but I rarely vomit, hate it so much that I’m extremely good at repressing it… Now I was sort of wishing I could to feel better but it wasn’t happening on its own and I wasn’t gonna force it! Throat is still sore from my scope, anyhow! I was also getting a headache and upper neck stiffness (though very mild compared to my other symptoms) and the acute confusion and cognitive slowness I sometimes get. This kept me up till 4, despite being exhausted I felt too ill to sleep or even lie down… In fact waited till I was literally drifting off sitting up before making a wedge of pillows to crash on. Still in my clothes, jeans, bra and all, plus two sweaters because I was also cold and shivering (temp 96.7.) Early in the morning I stripped off the sweaters because I was, well, sweating, and took my temp at 98.0. Went back to light sleep a couple more hours, still ignoring the underwire and now sweat-dampened jeans… Woke up feeling a little like a hangover but much better, and temp 98.5, but throat more scratchy and sore (I’ve been struggling with that a few weeks, but it’s a lot worse today, as if I had been up vomiting all night… Maybe just having reflux. Speaking of, I skipped my nighttime plaquenil last night (didn’t wanna swallow anything, much less something potentially irritating!) or my omeprazole and levothyroxine this morning. The only med I took was my lamictal, which oddly enough gives me symptoms a lot like my episode last night when I’m LATE on it, and it’s orally disintegrating anyway and won’t bother my stomach. Tolerating my small brunch fine (sunflower butter on whole wheat bread and two slices of dried mango), and probably dehydrated but don’t feel like taking in liquids.
I have felt this same wave of symptoms at other random times during more actively flared weeks, often afternoons or early evening with no correlation to food or drink or rest, though more likely after sun. The remarkable thing is that I had 6 DAYS in a row of feeling better than I have in months. Even better than I felt on the low-dose steroids! I did capoeira (intensevfull-body acrobatic Brazilian dance-ish martial art I did several days a week for three years before getting so laid up) on Mon AND Wed with minimal soreness after, including walking and riding my new mini-skateboard to and from! Despite my de-trained state after months of only low-intensity exercise if any at all (except the steroid-boosted week.)This past week and on 8mg methylpred have been my only two weeks of near-normal functioning in the past 6 months! I was so excited that my plaquenil may be kicking in now (starter Jul 5th, timing’s about right to expect it…) And it came crashing back to earth, suddenly and dramatically, 2 hours after 2 measly drinks, taken with plenty of food. Has this ever triggered any of you?
Given my vague and provisional diagnosis, this is making me more nervous about something a cousin was diagnosed with after being misdiagnosed with lupus originally–porphyria. Symptoms are often similar, especially photosensitivity and intermittent nausea, but GI symptoms are more pronounced (like mine are) and it’s more closely tied to drug triggers (like I seem to be for many, especially antibiotics.) Alcohol is a key one, and one of the things that I saw as evidence the porphyrias… I could always tolerate it fine, or so I thought… I have had a few bad experiences in the past, but since I’m not a super heavy or even very regular drinker, it’s hard to tell! 3 times throwing up from drinking in my life, but all following 4+ drinks in a night. Though sometimes I’ve had up to 6 without consequence! Other than drunkenness But it’s true my sense of wellness slips much faster than my level of intoxication, hence I’ve always been a very moderate drinker. Another sign of porphyria I’ve NEVER had is brown-purple-red urine… But wondering of the other things really fit with lupus or lupus meds??? I’m on the meds listed above plus aspirin and Ativan as needed, but nearly never need (had one tablet at night this past Tues, but that’s it for a long time!) Recently off cephalexin for a UTI (ended last Friday and had really dragged me down with neuropsych synptoms and a flare-up of many of the same things as last night, but I was also late on lamictal a lot due to my me mental disorganization and general disturbance!) and terconazole cream for the yeast infection that followed (finished Wed night.) Cephalexin contraindicated alcohol and grapefruit both, but I’d been off it 6 full days (the same six days I felt awesome), so unless I’m a mega-slow acetylator, it’s long gone!
I know you guys are not professionals at diagnosis, but you are all excellent historians and perspective-sharers I get the distinct sense that my docs will just say, nix the alcohol and problem solved, without investigating the cause of this surprise clearly-defined issue… I don’t care about drinking that much, I love good microbrews and would miss my favorite cocktail (caipirinha! National drink of Brazil, which I can’t visit due to my sun issues!), but I’m certainly no boozehound. What I DO care about is evidence for a proper differential, which doctors seem to do less and less of these days… Gotta speak up myself when there are doubts. Thank you for your thoughts!