Eric and I enjoy the occasional drink(s) with friends and family.
We FIRST started noticing some weirdness after a night out. That's when he woke up and he had a swollen face, swollen throat and petechia. ER here we come. They had no clue, they just thought it was an allergic reaction. 2 weeks later, we went out and nothing happened. A month later we were with my family ... not drinking and the petechia popped up. That night we had 1 beer at dinner and that's when we started to think he was allergic to the beer he had been drinking for 20 years. Tests, tests, and more tests and no answers. We asked about if he should not drink and they said absolutely not! No problem. he didn't drink for about a month and a half or more... then we got diagnosed with Lupus. He didn't understand what that meant. So I had to take it in first, research it to death, talk to people that have it, before I came to an understanding. I explained it to him and now he gets it...
Here's my question or curiosity if you will...
If he doesn't have - what do you call it - an outbreak?? Here and there he will drink a couple of Corona's and he will be just fine.
If he does have the SLIGHTEST outbreak and he even drinks half a beer, he's done for. Petechia is raging, hives, swollen eyes and face... then we pray no swollen throat. Which by the way... he hasn't had since he started prednisone.
I don’t drink often at all. But I can tell you . when I’ve been having runned down days a drink will make me violently I’ll. On the other hand when I’m good. I can party. When the flare is coming or maybe if our resistance is low, I think a number of odd reactions can occur
I’m not a drinker…but for my birthday we went out and I had a sangria. My family all commented at the table about my face…and how red it was. I also felt funny. I really don’t care about drinking…so for me, that may be it.
I am able to drink beer and white wine but anything else and I get a flare of vasculitis. I never drink if I’m out in the sun as that is a recipe for disaster. In my case I turned out to be allergic to sulfites. They rinse alcohol bottles in a sulfite solution to steruluze the bottles I think. Red wine has naturally occuring sulfites so that is completely out. I can have mixed drinks occasionally but those sometimes trigger the vasculitis in my abdominal wall which is extremely painful. At this point, I have a drink maybe twice a month. Not so easy when you’re half Irish and every family party involves alcohol. Fortunately my husband doesn’t really drink either so at least I have someone sober to talk to at parties. Actually we enjoy watching the way people act when they’ve had a few…lol Sulfite allergies can be difficult to pinpoint. My oldest son has it really bad. He has to carry an epi-pen. He had whipped cream on a sundae and within 20 minutes his lips were turning blue, he was struggling to breathe, his tongue was swelling etc… Very scary. Best of luck to you both.
It is SO weird how some days he's fine to drink and some days we regret even the thought of LOOKING at the beer. Annie, when you are good to party... do you pay for it the next day? Not the typical payment of a hangover, but with Lupus... is your day after different and/or worse?
annie said:
I don't drink often at all. But I can tell you . when I've been having runned down days a drink will make me violently I'll. On the other hand when I'm good. I can party. When the flare is coming or maybe if our resistance is low, I think a number of odd reactions can occur
Could you feel it? When Eric and I met, we drank quite a bit... we would go to the pool hall, shoot pool and drink beer... lots of it. His first beer... he would put the ice cold bottle on his ears. Then once that got warm, he would put ice. They were SO red and swollen. Now his ears don't get like that, I assume from the meds he's on, but his face... I guess it's the so called "Butterfly Rash". He looks like a raccoon, bless his heart! Everything on his face is this reddish purple tint... almost looks like dry skin, EXCEPT around his eyes... it's his normal skin tone. WEIRD!
Steen said:
I'm not a drinker...but for my birthday we went out and I had a sangria. My family all commented at the table about my face...and how red it was. I also felt funny. I really don't care about drinking...so for me, that may be it.
Interesting... I'm curious if he may be allergic to that as well. Before you found out you were allergic to the sulfite, what were your reactions? I looked up the vasculitis images... and it looks identical to petechia!!! I'm sorry, and no offense, but I'm so happy I found someone that sounds like they have a similar reaction to alcohol. That sounds so bad, but I'm sure you know what I mean.
Do you take anything to try to prevent the vasculitis? What do you do when it flares? Eric has an epi-pen. That was the first thing they gave to us because it's caused from a reaction of some sort ... from some.. thing. Still, we do not know what triggers it but 7 times out of 10... it's alcohol. We drank last Friday and immediately his tongue started to swell and the rash was spreading like a fire.
Annemarie said:
I am able to drink beer and white wine but anything else and I get a flare of vasculitis. I never drink if I'm out in the sun as that is a recipe for disaster. In my case I turned out to be allergic to sulfites. They rinse alcohol bottles in a sulfite solution to steruluze the bottles I think. Red wine has naturally occuring sulfites so that is completely out. I can have mixed drinks occasionally but those sometimes trigger the vasculitis in my abdominal wall which is extremely painful. At this point, I have a drink maybe twice a month. Not so easy when you're half Irish and every family party involves alcohol. Fortunately my husband doesn't really drink either so at least I have someone sober to talk to at parties. Actually we enjoy watching the way people act when they've had a few...lol Sulfite allergies can be difficult to pinpoint. My oldest son has it really bad. He has to carry an epi-pen. He had whipped cream on a sundae and within 20 minutes his lips were turning blue, he was struggling to breathe, his tongue was swelling etc.. Very scary. Best of luck to you both.
I rarely have a drink, because I have seizures associated with my Lupus, but the last time I had a Cosmo, I felt a little funny. Can't really put my finger on it...but decided my health was more important than having a drink.
I wish your husband well. Has he been DX'd recently? If so, you need to really pay attention to what his triggers are. Everybody is different. He might be allergic to 'something' in the beer....
I do drink but seem to allergic to many things. I can drink wine I can drink vodka. I can also drink champagne. I try not to drink anything else. I just had a terrible reaction to hair dye - itched terribly for 4 weeks - then got prednisone
I know my cousin found out she’s allergic to malt which is in most alcohol. Another cousin of mine had rheumatoid arthritis and stays away from gluten and most alcohol except red wine. I used to drink more before going on plaquenil. Once I started it I can only have one beverage, also most of the drugs for lupus warn against drinking, esp plaquenil so my drinking days are over.
I have a migraine syndrome and learned many years ago not to drink- VIOLENT headache that lasted for days My sister would get vasculitis of her lower legs when she drank also.
No reaction when I’m good. I drink plenty of water and never in the sun. Would try it matter how good I feel. Don’t drink beer or wine though. Tequila rum vodka. Not as much crap to react to.
The petechiae is just the word for the spots, vasculitis is what causes the petechiae. If he reacts to dried fruit then it could be a sulfite allergy. Alcohol causes you to “flush” when you drink it and I believe it raises your BP which can make your blood vessels leaky. That’s not the best explanation but I’m having a bad foggy brain day…lol Has he ever taken any sulfa drugs? I was hospitalized as a kid for a reaction to those. I can’t even take iron pills because of it being based on sulfa. I hate that my son inherited that allergy but at the same time I’m happy because he won’t be able to party down in college. Kind of a relief. Has he gone through allergy testing? We have lots of weird food allergies in my family so it’s worth being tested. What did he have to drink the last time it happened? Does he react to draft beer also? Draft shouldn’t have sulfites as there is no bottle. I also have an easier time with dark bottled beers or you can look for sulfite free on the labels. Cans are also an option. I love good beer so I had to figure out which ones I could safely drink. I’ve had this illness since I was about 7 so I’ve had a long time to figure out what I can and can’t do. Asian beers also don’t bother me. American and Mexican beers I have a tough time with. It’s alot of trial and error. I hope he finds something he can tolerate. It’s not much fun being the lone sober person at a party and as he’s a guy it must be even worse. Please feel free to ask me anything. Gentle hugs, Annemarie
Supportive_Wife said:
Interesting... I'm curious if he may be allergic to that as well. Before you found out you were allergic to the sulfite, what were your reactions? I looked up the vasculitis images... and it looks identical to petechia!!! I'm sorry, and no offense, but I'm so happy I found someone that sounds like they have a similar reaction to alcohol. That sounds so bad, but I'm sure you know what I mean.
Do you take anything to try to prevent the vasculitis? What do you do when it flares? Eric has an epi-pen. That was the first thing they gave to us because it's caused from a reaction of some sort ... from some.. thing. Still, we do not know what triggers it but 7 times out of 10... it's alcohol. We drank last Friday and immediately his tongue started to swell and the rash was spreading like a fire.
Annemarie said:
I am able to drink beer and white wine but anything else and I get a flare of vasculitis. I never drink if I'm out in the sun as that is a recipe for disaster. In my case I turned out to be allergic to sulfites. They rinse alcohol bottles in a sulfite solution to steruluze the bottles I think. Red wine has naturally occuring sulfites so that is completely out. I can have mixed drinks occasionally but those sometimes trigger the vasculitis in my abdominal wall which is extremely painful. At this point, I have a drink maybe twice a month. Not so easy when you're half Irish and every family party involves alcohol. Fortunately my husband doesn't really drink either so at least I have someone sober to talk to at parties. Actually we enjoy watching the way people act when they've had a few...lol Sulfite allergies can be difficult to pinpoint. My oldest son has it really bad. He has to carry an epi-pen. He had whipped cream on a sundae and within 20 minutes his lips were turning blue, he was struggling to breathe, his tongue was swelling etc.. Very scary. Best of luck to you both.
Yes Bak, he was diagnosed in February so I'm watching everything like a hawk!!! I hate to be "scared" of things right now…. I want him to live normally and when something happens I write it down for the doctor for testing.
bak said:
I rarely have a drink, because I have seizures associated with my Lupus, but the last time I had a Cosmo, I felt a little funny. Can't really put my finger on it...but decided my health was more important than having a drink.
I wish your husband well. Has he been DX'd recently? If so, you need to really pay attention to what his triggers are. Everybody is different. He might be allergic to 'something' in the beer....
It sounds like he has a form of Vasculitis as well which may get inflamed with alcohol. Vasculitis is another autoimmune disease common in lupus patients. If he’s getting the bleeding under the skin (petechia) this isn’t usually due to an allergy. It’s due to inflammation of the capillaries, blood vessels and lymph vessels. He should get checked for Vasculitis the next time he gets the rash as they may need to add a treatment. You don’t want to mess around with Vasculitis as it can get really serious real fast. Please get him checked to be sure. Take care!
I used to drink heavily in my 20’s… rock star style haha I have to drink very moderately now. No more than 3 glasses of wine once or twice a month. No beer. Vodka is ok also in moderation. Beer has gluten. Has he been tested for gluten sensitivity/celiac disease??? Cut out gluten in his diet as much as possible anyways. Have him try a few different wines or vodka drinks. I hate to advocate for drinking but really moderately for me is ok. Gluten is bad for most people but actual poison to others. Hope he feels better soon.
O! Good idea! He just loves his Budweiser but he hasn't had that specific beer since before Thanksgiving.
annie said:
No reaction when I'm good. I drink plenty of water and never in the sun. Would try it matter how good I feel. Don't drink beer or wine though. Tequila rum vodka. Not as much crap to react to.