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  • Alcohol and Lupus

    Hi again everyone.....

    sorry I've loads of questions this week, I'm so new to Lupus and curious about everything...currently waiting for a few books to arrive in the post so until then I will have you all plagued.

    I was wondering if anyone knows of any effects that alcohol has on the body. I really enjoy my few glasses of wine at the weekend. I have always drank wine (it's the only alcohol I do drink) but since I started this current flare I have been having a few drinks and I am absolutely floored, I spend the whole night and all of the next day violently throwing up, extremely fatigued and just generally exhausted. It's not after a crazy night out or anything. I used to have a massive tolerance for alcohol.

    Since the flare three months ago the doctor pretty much straight away put me on the pred, which I first attributed to the intolerance. I'm also on Plaq only recently though and I am wondering if I was that bad just on the pred are my alcohol induced symptoms going to be worse and will I have less tolerance for alcohol now the plaq has been introduced along with the pred....I know ppl will say alcohol is bad for you anyway etc etc but at the end of the day I am young, I enjoy my few glasses of wine at the weekend but if anybody could advise me whether I am supposed to be drinking with Lupus, plaquenil or pred can they please let me know. If I have to stop drinking during a flare up then obviously I will.

    Many thanks again for all valued advice.

    Jess xxxxx

  • #2
    Hi Jess,

    I can relate alot to your post! I havent been diagnosed with Lupus but with another auto immune disease (Sjogrens) just today actually. Not fully convinced with the diagnoses but thats a whole other post!

    I suffer really bad from alcohol too. Its only in the last year or so since I started having all my other symptoms that its gotten really bad. If I have over 2 glasses, Im violently sick soon after having them, and all night into the following morning like Ive been poisoned or something! Im young enough too 28 and I enjoy a few glasses but Im seriously thinking of just giving it up. Its just not worth it. I suffer enough with my other symptoms.

    Im from Ireland too...Cork. Were you diagnosed easily enough? did u see a rheumatologist? What symptoms did you have? Sorry for all the questions but I just seem to be getting no where! I have negative ana so not even sure how i got my diagnoses of sjogrens today

    Take care,

    Marie

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    • #3
      Hi Marie,

      I only got diagnosed with SLE nearly two weeks ago now. But at first when my GP did the ANA test it came out negative...he was suprised cause he was convinced i had Lupus, I had all the common symptoms, it was only when the symptoms got worse and persisted for months that he referred me to a Rheumatologist. The Rheumy did more tests and they all came up positive for SLE, aneamia being one of them. He named a few other blood results that I can't remember now. It took about 3 months for a diagnosis but I had to go private to get that diagnosis so quick and you know the private health system in Ireland, cost me an absolute fortune...but worth it in the end now that I know what it is.

      My symptoms started at the beginning of the year, I was really tired then I broke out in this rash on my arms and face but I work full time and I also attend college at night and I was in the middle of exams when all that started so I presumed it was just the stress of it all. but then I started getting pains in my hands then my feet, then all the swelling in my hands started...it just progressed from there, my knees started swelling and were extremely sore, then my shoulders, my neck would sieze up and then finally my hips gave out. There were days I couldn't get dressed or do my hair properly. holding a brush would be a challenge, it got very bad...I was starting to be really late for work, what would usually take me 30 mins to get ready was now an hour and a half and I would still be going out the door with my hair all over the place and not a stitch of make up on. I eventually got an appointment with a Rheumy.

      I have never heard of Sjogrens before. Is that similar condition to Lupus??? why aren't you fully convinced with the Sjorgens diagnosis and have you been waiting long for your diagnosis??? Now I'm asking a million questions!!!

      Comment


      • #4
        Jess, heres a link that will explain Sjogrens....

        http://www.uklupus.co.uk/ssyn.html

        Basically its a systemic autoimmune disease aswell but it attacks the tear duct and salivary glands and can affect the whole body aswell causing joint muscle pain, fatigue, neuropathy etc.

        Ive been having strange symptoms since early last year but Im at a loss as to what it is. I came across this site when looking up my symptoms and I feel I can relate to so many symptoms on this site. My Gp tested me for Lupus in May when he saw my hands had swelled up but my result came back negative. I was in a lot of pain... quite like flu pain which comes and goes. He referred me to a private rheumatologist who I saw today.

        This fella didnt even take my bloods, just went on Gps findings of 3 mths ago and told me I dont have Lupus by just looking at me! He gave me a quick examination of joints and said he could not find any inflammation but that he would send me for a bone scan just be sure. I told him about my really cold hands that turn blue red and white... he told me to wear gloves! LOL

        Anyway he did some eye test with me and said that my eyes were quite dry and this is probably whats causing my other symptoms! He told me its called Sjogrens Syndrome, wrote me a script for eye drops and painkillers and charged me 170 euro!!!

        I was fit to burst coming out of there. I was so annoyed. I have my doubts about this diagnoses because it was so fast and rushed, usually it has to be confirmed with positive bloodwork or a biopsy. I feel I wasnt taken seriously at all. Ive been getting facial rashes but I dont know if its allergies or not....I also get swollen fingers but he put that down to the lupus pernio (fancy name for chillblains) and ive rash on my nose which he said is most likely the lupus pernio aswell. Ive been putting up with these horrible symptoms for over a year and Ive 2 small kids and a husband to look after! My quality of life has really been affected. Iit feels like im getting no where with this and like ill just have to put up with it!

        Sorry for ranting! Just very annoyed today! and i cant even have a drink!!! lol
        Last edited by ElephantEyes; 08-05-2011, 07:12 PM. Reason: Replaced with a link from The Lupus Site - see forum guidelines

        Comment


        • #5
          That sounds very strange....I got all my bloods done with my GP in the first go....I also have the rash on my cheeks and nose (very mild at the moment) but at the time it was very prominent and that's what first alerted the doctor to Lupus with me. He called it a malar rash, that and my swollen fingers. When the bloods came back negative he just had to put me on pred and monitor me but when I just go worse he referred me to a Rheumy in Vincent's who did all the tests all over again and then more indept ones and within 4 weeks of seeing him I had a positive diagnosis.

          when I first went to him I was so frustrated, same as you I paid all that money and then he told me to go get all the same tests done again and come back for review in a few weeks. I was gutted. I felt like I was going nowhere with this and that nobody could help me, they were just constantly sending me for x-rays and bloods. but there was light at the end of the tunnel cause he called back with a diagnosis.

          but your doc hasn't even done any bloods on you. how can he say for def that you don't have Lupus...I'm actually very surprised...he can't diagnose you for certain without bloods...my doc did all the same things, checked my joints, got me to do all the reflex exercises but he said there's no way he can tell me exactly what it is without my blood work results...and off he sent me for all my x-rays and bloods again.

          your Rheumy doesn't sound great at all...I think the rash should have given him a good indication to re do all your bloods again!! I'm actually very suprised. I think you should have a referral to another doctor. you sound like you have similar symptoms to me, the rash on the nose and cheeks and the finger swelling.Can you call him back and ask why the bloods weren't done???? €170 for him to send you home with some painkillers is not good enough. How long were you in there for???

          I know I have found it hard the last few months. I have work, college and we've just bought a new house...I can only imagine how hard it would be with children to deal with aswell. I really don't know how you've done it but the fact you have been able to do it just shows how strong you can be.

          Comment


          • #6
            Congrats on buying the new house! must be very exciting for ye! Gosh, I can imagine having SLE and trying to juggle college and a full time job is no walk in the park!

            Im a stay at home mammy at the moment. To be honest, I dont know how id handle it if I went back to work. I have severe exhaustion at times, even when my 6 yr old is at school, I'd be having afternoon naps with my 2 year old!

            I just dont know where to go from here really. I made an appointment with my Gp for Monday to discuss it with him, only to realise after they closed that I wouldnt be able to go! Have to bring son to a lego camp in cork city all next week. Brain fog is bad at moment.

            Seemingly, Sjogrens (seriously cant pronouce it just aswell im typing it!) is treated the same as Lupus with Plaquenil to slow down the disease process, more the reason why he only felt the need to give me painkillers!

            The rash ive gotten on my face is weird. Ive had the redness on my nose since last year. But I went to France in beginning of June for a family holiday and 2 days after being out in the sun, i got a hot stinging rash across my cheeks and nose. It was very dry and I couldnt put anything on it like moisturiser or makeup, only a thermal water spray that i got in the chemists over there and pharmacist told me to stay out of the sun in broken english. It lasted a week and ruined the break for me. I was wearing factor 30 and it wasnt that hot..around 25 degrees. I also got a rash on my arms and legs quite like heat rash but it didnt itch..looked like red dots under the skin.

            Then more recently, only last wknd, I had been out with friends on the friday nite for few drinks and was quite sick (the usual reaction to alcohol!) and tired the following day. That night I came out in a rash identical to a malar rash from the pics ive seen on internet. But I had put on a new moisturiser that night, a hypoallergenic one for sensitive skin though! It lasted 2 days then faded. So I dont know if it was the moisturiser caused it and maybe the suncream before? Ive been having too many coincidences now. My skin was never that sensitive before. My fingers over my knuckles swell up occasionally aswell and can be very painful. But I have no visible swellings other than that. Sometimes my ankles get a bit puffy at night.

            Its the pain that gets to me worst and the exhaustion. Does yours feel like flu pain, that comes and goes and migrates to anywhere in your body? its so hard to explain. Not sure if its my muscles, joints or bones. I feel the need to stretch to get relief. Anyway ill have to keep looking for answers. Dont think I can go private again though just cant afford it. I was counting everything on this appointment today! Crazy my bloods werent redone and I only realised it when I came away. Ive a good mind to write to him and complain.

            Comment


            • #7
              Hi Jess -

              Just in relation to your question about alcohol and lupus - I did ask my doctor about this when I was originally diagnosed and he said it should be fine so long as I don't take the tablets with alcohol.

              Having said that, if I'm flaring, drink just wipes me and I suffer so much the next day. When I'm fine health wise I can have a few drinkies, no problem. My tolerance has decreased though, but all my friends seem to be the same so maybe we are just all growing older ...

              Take care,

              Comment


              • #8
                Nellie - when you mean don't take alcohol with the meds do you mean not straight after (ie take meds in morning/ alcohol in evening)?

                I was once told not to drink on them but perhaps it was just my mum trying to tell me not to drink So I'm not really sure. I never used to but then I started to enjoy the occasional one - however this was usually with friends and so was quite a late, tiring night anyway and I always put the feeling down to be tired rather than the alcohol. But perhaps it is that - I'd wake up with an extreme hangover type feeling.
                Now i've pretty much completely gone off the taste of it so have only had a very occasional one now whch has helped anyway

                Comment


                • #9
                  I have only been diagnosed with skin lupus but I have no tolerance for alcohol at all. 1 beer could make me sick after an hour, 1 shot of any spirts and I'm nearly asleep and Baily's makes me itch and sleepy . Beer is the worst and only recently I've started having issues with wheat and gluten foods. I am on no meds so they are not causing the issue.

                  Comment


                  • #10
                    Well what my GP said was 'steroids can upset our stomach and alcohol can upset your stomach so if you take your tablets in the morning and drink in the evening you should be fine'!

                    It doesn't suit everyone though, we regularly have posters who say that they can no longer tolerate alcohol, but we've plenty who do partake. You know your body best and what suits it.

                    I have on occasion not cared what my body was telling me and attacked the wine anyway! And I only have myself to blame for how I suffered afterwards .....

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                    • #11
                      I am one of those no longer able to imbibe. Flare or no flare alcohol and I no longer get along. Now I order some very fancy non-alcoholic beverages when I go out instead.

                      Take care,
                      Lazylegs

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                      • #12
                        Hi Jess - I've had lupus for a long time, and I do have the occasional gin & tonic. I tell myself the quinine (anti-malarial) in the tonic is medicinal..

                        Wine makes me flush quite badly, so even though I love it, I only have the occasional glass at home - people think I've had "one too many" if I have it while I'm out...

                        Lisa

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                        • #13
                          Ah thanks for clearing it up Nellie it makes more sense now.

                          I suppose it depends on how you enjoy alcohol - if a few drinks with tea is making you fall on the floor drunk then perhaps it's time to cut back. But if 1 glass of wine on a night out means you're having a great time then I always think well at least I'm a cheap drunk

                          Comment


                          • #14
                            Hi there

                            I just wanted to add my experience with alcohol. When my lupus is not controlled, I can have a terrilbe reaction to just a couple of glasses of wine. With me, I start to feel cold, then have diarrhoea, and then I shake uncontrollably for a few hours. I then get very hot and feverish, before finally sleep comes to relieve me of my suffering. By the time I wake up, I tend to be fine again. The symptoms were so bad that I stopped drinking alcohol for a good while.

                            Since I've been well though, I can drink wine without any problems (other than a hangover)!. My GP says it's fine to drink alcohol in moderation - I recently had a chat with her and told her I probably average one bottle of wine (10 units) per week, and she said that was fine.

                            Hope this helps!

                            Comment


                            • #15
                              Hi
                              Just to let you know that not all Lupies have a problem with alcohol consumption! I have always liked red wine, and still imbibe at the weekends with no ill effects!
                              However if you are having problems, then you will have to stop drinking ...
                              Em

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