Hi, I have had lupus for about 15 years. I had a flare up and ended up in the hospital 3 weeks ago. Last night I had 2 glasses of wine, and felt awful all day and had to go home from work at 12 and slept the hole day. Has anyone else had this happen to them? This is a new symptom for me, guess I won't be drinking wine anymore....Never had this effect before...Any thoughts? Thanks, kim
I hope i'm not being bold but if I were you I would get a new doctor. I have problems with fatigue and joint pain I am also being investigated for cns involvvment. I'm currently not on any steroids but I do take plaquenil and flexeril. Plaquenil helps to control my flares and flexeril is a pain medication that I often take with a drug called amytriptiline which is a nerve blocker. I'm definately not a pill pusher but I enjoy having a certain quality of life. When i'm on my meds I am able work and enjoy life much more than when I am off them. :d I hope this helps. You should not have to suffer because your doc does not beleive in meds. As for the alcohol, I avoid it most of the time but when I have a drink or a glass of wine the next morning I can hardly walk because of muscle pain in my lower limbs. This is not a hang over it is a symptom of my lupus.
What is cns??? Maybe thats what the effect was the next day...In the past I could go out for dinner and drinks, and never feel bad, now 2 glasses of wind over a 5 hour period and I can barely maitain the next day. This was not a hangover...It was muscle pain and fatigue...Maybe my lupus is advancing and that's why I can't drink???? Thanks for the response, kim
cns is a short term for central nervous system involvement. I have been having stabbing pains like someone is using a voodoo doll on me plus loss of sensation and forgetfullness. I don't know if it connects to the alcohol but it might. It may be that your lupus is getting worse or maybe your symptoms are just changing. I think certain chemicals or products in the alcohol affect my muscles. It's extremely painful and if you are like me I understand you having to take the day off work. you should dicuss the possibility of meds if you start feeling that you can't function from day to day. I hope you are feeling better. :d
They found out that I have three ulcers! Being sick from the ulcers caused me to start having lupus flare symptoms. They caught it very early...Thus, only four days in the hospital instead of my usual 7-8 day stay!
I am actually thrilled that they tracked it down. Makes me feel better. I knew that something was wrong with my digestive system.
I am newly diagnosed with lupus, and I am not on any medications yet.. however when I drink the next day my cheeks, nose and forehead become very very red. This happens when ever I am in the sun or when I drink. I won't be drinking and I will stay away from the sun. I wonder if drinking has something to do with this.
I was diagnosed with SLE in 2000. But diagnosed with RA when I was 11. My father also had RA and was in a wheelchair. Hmmm think its genetic. Anyway I noticed recently after a few beers on the weekends, I am extremely fatigued and feverish with an aching body. My butterfly gets very red when I get fevers which seems to be directly associated with fatigue. The aches are not joint related but seem to be muscular and stiff. I came on this site looking to find out if the alcohol is the culprit and if anybody else has this problem. I see I am not the only one. sux doesn't it. I guess I won't be enjoying anymore cold beer the rest of the summer or my life for that matter. Although I have been rather fortunate. Most my organs are not effected and the ones that are is very mild, some fluid around my heart which even healthy people have some and I do have pluerisy but the joints are quickly twisting. I wish you all the best and keep up the fight.
When I was first diagnosed with SLE, alcohol did make me feel worse. Now that my symptoms are very much under control and I only take 200 mg of Plaquenil a day, I can consume alcohol I could before I was diagnosed. I'm not sure if this reasoning is correct, but I do know that alcohol stresses your body if you have more than about one drink at a time. When my SLE was bothering me (or within a couple months after having a flare), I think my body just couldn't handle that extra stress. The physical results of drinking a couple beers were about the same as when I would over-work myself or not get enough sleep. The good news is that hopefully when you are not flaring, you will be able to enjoy that glass of wine with dinner. (All of this assumes you didn't develop a sulfite allergy...) Good luck!
I would like to ask for somebodys and anyones advice my cousin that I love dearly has Lupus and she is only 16 about to be 17 she is into this party stage and drinking all the time she is on medication and doesnt seem to think that drinking will make a difference in her life that it is not hurting her body. And I dont think that is true any advice please anything is very much appriciated!!!!
I would like to see if anyone could help me with some questions I have...
first of all, Im almost 100 percent sure that I have Lupus..just waiting for my first Rheumy visit which is taking forever..
My ANA came back positive w/a homogeneous pattern and a ANA titer of 1:160..Ive read soo much about it after receiving this positive result from the doctors nurse over the phone one day (since I was provided w/absolutely no info..just that I needed to see a rheaumotologist asap, Ive been researching my blood results on my own..)
so, I know you can receive a positive ANA and it NOT mean Lupus, but with my symptoms and how bad they are right now,achingly, painful tiredness, almost like arthritis deep in my bones, swelling in my face and eyes, really bad brain fog(cant remember anything at times!), rash on my face,even a small dark lesion on my face now,dry skin,hair and nails..itching everywhere all the time...
Just wish I had answers now and want to look forward to what's going to be done to relieve me of these symptoms!
Can anyone tell me that there is a medication out there that will help to alleviate all this??
I have 3 children and feel so helpless and moody with not being able to do what I normally do to raise them..I cant even lift my baby w/out crying sometimes from the muscle fatigue...
please tell me that there is something to look forward to , after they officially diagnose me =(
I just wanted to say Hi to people. I'm new to this and I've been diagnosed since July 2009. I am looking for a support group to be apart of to help me understand what I'm going through and how to fight it. Is this a good place to be?
I have been living with Lupus since 1991, without a diagnosis till 1999. I wasn't even sure I had heard of Lupus before the Rheumatoligists suggested that I had several of the symptoms in "91", but not enuff for a diagnosis!! Ha! Ha! I am here to let you know there is a light at the end of the tunnel! I have been talking with my Dr. and there is a new med out there that should be available, pending FDA approval sometime in the spring to summer of 2011! This new family of drugs do not have any of the side effects of the steroids and other meds available now!
To my horror I was told this is the very first new drug introduced for SLE (Lupus) in 50 years! I think this is insane! Knowing there are over 1.5 million affected by the disease in the U.S. alone and over 5million world wide! No reason crying over spilt milk i guess, and please know I am one of the blessed ones! My symtoms are not nearly as severe as many I know and have read about. So I guess I'm wrting this to let you all know there is some sunshine and blue skies on the horizon. I like you wanted my old self back, so I guess as a connected family we have hope of finding that old girl again and seeing if she still has the fire she once had! Good luck to all of you on your quest for answers, my best advice is to find the best Lupus Dr. you can. Hopefully one who is involved in research is even better. My prayer is that there will be a day when no family has to face this disease without Knowledge and without medications that actually bring the body back to a place of normalacy instead of placing a bandaid on it hoping it will subside. Hang onto those dreams Ya'll I just know a cure is on the way!
hi my name is marie, and i have lupus. i was diagnosed 2 years ago after going through lots of pain and aches, fatigue, forgetfull. i just realy need to talk to someone that has the same disease so i can understand that im not the only one, im not on my own. i have had a few flare ups the worst was just recent. i had excrutiating abdominal pain and was put in hospital 4 days before christmas. So christmas was absolutely terrible for me and my family. IM Back on 30 mls of prednisilone, and 10 mlg methotrexate, not to mention the pain killers. Im having pain every day especially in my back and legs. im so sick of feeling this way every day. the worst bit is trying to explain to your loved ones because alot of the time they just dont understand. I have found that drinking any alcohole does make me worse, so ibe given up drinking for good. My next step is to quit smoking, its just so hard, but i am determined. I will do it with no meds.... i think i have enough meds to take with this lupus. Anyway i already feel better just expressing myself to u guys. i wish u all the very best with this disease and we can get through it together.
Hi, I have noticed the same thing for a few years now and it seems to be getting worse. However, occasionally drinking and having a night with my pain being helped from doing so, is probably the only thing keeping me sane at this point, even if the next day is horrible. It is most definitely a double edged sword. Good luck and thanks for sharing!
Hello everyone. I had surgery (hysterectomy) this year and ended up with an infection which landed me back in the hospital after i recovered from my surgery. I had horrible chest pain, i was always tired and i had ulcer. My last day in the hospital i was told it could be lupus and i need to see a specialist. After seeing a specialist and getting a lot of blood work done i was told that the ANA test came back negative, however it IS Lupus as i have all the symptoms. Shortly after i ended up in the hospital for a week here, four days there and two days there. Again i was told its lupus by all the doctors that saw me in the hospital but this time i was also told that ten percent of people with lupus usually have a negative ANA test so i was given plaqnequil of which affected my eyes so i am no longer taking it.
A few days after my diagnosis i was fired from my job so now i am not able to visit my doctor to be treated. I am now homeless. I am currently living in a motel owned by my friends. I am so sick and tired of being sick! I had a glass of wine just now which is why i am here as i am not sure how this will affect me. I wish there were a cure for this. My life seems to be on pause ever since i became sick and there doesn't seem to be a light at the end. I need help.