I've been really worried about that because in my mind… he's going to explode! I get really scared and just baby him. He has an appointment with Dermatology and his RA next Tuesday so I will for sure bring this up. Thank Tinapet
tinapet said:
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!
Well… lol I felt kind of selfish asking my original post. It's not that he's an alcoholic or anything, it's just nice when the time presents itself to enjoy a drink or two with company. I will write the celiac disease on my to do list for questions for the doctor. I remember it being mentioned but I'm almost positive they tested him for it and it came back negative.
Jennifer said:
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.
He has decided just to stop. There is no sense in making it worse. My only reasoning is to try to find what it is that triggers his flares. BUT, it's not worth his pain, that's for sure. He hasn't had any issues with the sun at this point. How long do you have to be out in it to feel sick? Can you mow the yard for instance?
Steinfadt1 said:
I stopped drinking all together. Alcohol makes me violently ill. Similar illness as sun exposure. Not worth it.
Do you find anything else, in life, makes your flares as severe as if you drank?
Maria Tapia said:
I can't drink beer either. Same thing happens to me but as severe as your husband . ;(
The worst for me is sun exposure. Overhead strip lights are also no good for me. And stressful situations will cause muscle fatigue. If I get a rash, my joints may act up. I’m just figuring these things out. I keep a diary of how I feel and what I’ve done that day
The first time I got a rash without sun exposure it was my right hip. Such pain and itching on skin as well as hip bone. I’ve had this rash now 5 months. my joints and muscles have been getting worse as the rash does. days when rash not agitated muscles and joints feel better. The rash is tumid lupus. I was told rash could go away in 3-6 months
Stress is the worst for me. Alcohol doesn’t effect me like that, but at times it will make me extremely sick when i’ve only had a beer and other times no problem.
I like my wine but my face gets very very red like sunburn. Although yesterday afternoon I was out and passed a mirror in the store and it was red like sunburn too…so I just don’t know anymore.
I did not used to react to the sun. I could do what I liked, no reaction. However my malar rashes have been more frequent lately, and I've noticed a difference in the sun now. Recently I took a brief car ride with the setting sun full on my face with the window rolled down. I decided to try and shield my face using a frisbee, but apparently it wasn't anything like enough. By the end of the fifteen minute car ride, my face was flushed and hot. No fun, but that's the only problem I had. However, I had also been having trouble getting a strip of sun full in the face in the evenings when I sat at my puter, and it would correspond with feeling notably worse in the evenings. So I moved my desk, and most evenings are better now.
In other words, though he may not have problems now, he may later. He'll be able to tell if he is, so just keep an eye on it, and be ready to start avoiding direct sunlight when it starts!
EDIT: Also, I'm glad he's decided to stop drinking! It isn't worth the possible result. ::hugs!::
Supportive_Wife said:
He has decided just to stop. There is no sense in making it worse. My only reasoning is to try to find what it is that triggers his flares. BUT, it's not worth his pain, that's for sure. He hasn't had any issues with the sun at this point. How long do you have to be out in it to feel sick? Can you mow the yard for instance?
No sun. Ever not worth it. You can be doing damage internally. Hats protective clothing UV blocking umbrellas can help a lot. I used to spend time out with my kids. Get rash a day later. So I didn’t connect at first. Then after prolonged exposure, summer days, aching fevers fatigue flu like symptoms. Connection may not seem immediate
I live in CA so there is no escaping the sun. We live on 5 acres so it has to be weedeated etc… I wear jeans, a long sleeved sunshirt, at least a 50 SPF on my face etc… as well as a wide brimmed sun hat and gloves. I use a spray on sunblock under my sunshirt just to be safe. I don’t really have a reaction to the sun, in fact I feel better when I get some sun. The symptoms always calm down in the summer but I still take precautions. So he can still mow the lawn, he’ll just have to do it early in the morning. I tend to only react if I get a sunburn. My husband and I went to Hawaii to celebrate our engagement and I got a horrible sunburn. The next day I was solid purple from the waist down. That was probably the worst my vasculitis has ever been. I was sick for several days. My poor hubby was freaked. So we stayed out of the sun and did tours. Oddly enough, the first symptoms of Lupus showed up after we went on a cruise to Mexico when I was 7 and I got a horrible burn. I never realized it until just now. I hope he feels better soon. Hugs, Annemarie
Hello, Well it is Normal - dealing with LUPUS or syptoms (misspelled-smile it is 4:00am) , it can be hard to really say !!! I also take prednisone , BUT before i found out the hard way ( almost killing myself at my sister B-day party and waking up in the ER) , Let Eric know to be VERRRRRRRRRRRRRRRRRRRRRRRRRRRY careful with that pill . They (doctors) say not to drink with the med. Because it intensify with alcohol . After 2 years now the only thing that i drink may be a small personal shot bottle (one serveing) and may a 5% alcohol daquri patch ( something simple . That was the WOREST day of my LIFE. Just be careful and when i go to gatherings /social events i don't drink at all, (which am not saying to have fun ) , but LUPUS has it 's own way and time to come out and it is Always different each time !!!! So please montor how and what amount . Sound crazie but it is the truth . BE CAREFUL - it is no fun trust me !! Take and best wishes go out to you and Eric ... Beverly L.