Wine !!: Can I ask do any of you have a little... - LUPUS UK

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Wine !!

445600 profile image

Can I ask do any of you have a little drink every now & again or all the time …… or never ! Whilst on medication just curious 🧐

94 Replies

No because of my meds. on the rare special occasions I have it makes me feel really lousy and its just not worth it.its just how it affects me others may well be able to without issue x

I never drink when I’m on meds but I was curious what others do and if u can with MMF more than anything else 😀

I take mmf too.i think you can.its my pregabalin that you shouldn't drink with x

Ahh ok thx

Good question...I don't drink at all. I do miss it. Maybe I should ask my consultant about this.

445600 profile image
445600 in reply to SLE-Warrior

I 4got to ask 2 day at my appointment but I’ve never drunk whilst on meds !

I am on warfarin and aspirin and if I drink I have to have the same amount every day and as I do not want a drink everyday I opt not to drink at all. I sometimes have a non alcoholic wine or zero alcohol ipa. My last real drink was in 2018.

I don’t drink whilst on meds I suppose I was interested what others do

I drink once in a while on meds, but im on Azathioprine and steroids, not MMF.

445600 profile image
445600 in reply to Sandy1212

Thanks for your reply cheers 🍷

Well. I’m not quite as disciplined as other lovely ladies. I rarely drink an alcoholic Drink. However when I’m with family and friends for a special occasion I order a glass of champagne. I allow exactly 6 sips. No

Gulping. It is way expensive but my husband

Told me he does not mind the cost if it makes me feel festive and I appreciate that!

Since I’ve not had a proper drink in 10 years 6 sips actually can make me a tiny tipsy. I’m not sure what it is about champagne but my

Tiny bit does not bother my body🤷‍♀️

Who doesn’t just love good champagne 🍾 😀

Im on MMF and i asked my consultant about drinking last week. He said i can drink but just dont go to any bottomlesa brunchs lol. Start slow

Im going to test a glass if wine this weekend.

445600 profile image
445600 in reply to

Well that’s good to know I’m sure they all sing from the same hymn sheet ! Enjoy ur taster 🍷😀

in reply to 445600

Lifes to short....enjoy it while we can and thank you 😊

Doesn’t matter whether it’s wine, brandy, beer, sherry, champagne, lager etc or whatever brand, it’s the ALCOHOL (ethanol, C2H5OH) that does the damage:

causes havoc with our meds, poisons all sorts of tissue including brain tissue, interferes with our metabolism and drug actions and causes depression and poor judgement.

Best to avoid this misdirected “pleasure”.

Not worth the risk. I’m not missing it at all.

445600 profile image
445600 in reply to Ingrid1234

Thanks for your reply

Ingrid,

Yes, absolutely! Just not worth the risk. A “misdirected” pleasure as you say, not a pleasure at all.

An organ poison.For me with lupus it’s a strict No, no.

Because I have sjogrens along with lupus I don't drink alcohol. It dries me out and I feel awful the next day. But I really miss it!

445600 profile image
445600 in reply to Insomniacette

Awww I feel for you ❤️ A little drink every now and again is definitely a treat 😀

I have a glass of wine usually with dinner though and lots of water too as can’t afford to get dehydrated. There is evidence to suggest red wine has health ben in moderation and I get less stomach bugsBe careful on MMF as you get drunk very quickly

445600 profile image
445600 in reply to Sarah74

Ok thanks for the information I’ve never had a drink whilst on medication but as I say sometimes a little treat is needed especially with what’s going on at the moment 😀

I have a glass or two of wine or prosecco most evenings & occasionally a bit more at family get together. Never too excessive. A little of what you fancy does you good !

445600 profile image
445600 in reply to HazelW

Awww thank you that’s good to know are you on medication at the moment? Thx 😀🍾🍷

Umm.. all the time, mostly wine. Probably have 3 bottles a week even though on meds (including Methotrexate). Rarely have a hangover unless I've had more than one bottle or gone on to the gins. I know I shouldn't but I enjoy it.

445600 profile image
445600 in reply to Deiniol

😆😆 🍷 Life’s to short I’m trying to be disciplined at the moment but I’m lovin the reply’s I’m thinking I might try a little tipple 😂

HazelW profile image
HazelW in reply to Deiniol

Exactly like me 🥂

I’m on Methotrexate which is heavy on the liver. I used to live in France and my rheumy there told me a glass of red was fine. It does have some beneficial effects too. No longer in France but they seem ok with a small amount of alcohol here. My liver and kidneys are screened regularly and so far, no increase in readings. Keeping fingers crossed and carrying on. Being coeliac and dairy intolerant is bad enough, I don’t want any more restrictions on my diet if at all possible!

445600 profile image
445600 in reply to wallock

No I agree ! Good luck enjoy fingers crossed 😀

I only drink on a social basis but even then I can’t over do it. To be honest even a slight amount makes me feel really rubbish. Last Christmas my manager bought me some of the pre-mixed gin cans and it was delicious! But only had half a can in the end as it made me feel so rubbish. The next morning I woke up with a mouth and throat coated in ulcers, fluish, pain (I’m sure we all know how awful alcohol can make us feel). I steer clear of it entirely now and would probably only have a drink again if it was a special function.

445600 profile image
445600 in reply to TeaandToast94

Awww take care hopefully you can tolerate it on a special day or night 😀

I asked this when I was at the hospital as I used to have a couple most nights. I was told in moderation. Now I only a couple at the weekend or special occasions. She said this advice might change as lupus and all it’s palls change the way our bodies function but for now just be sensible with it.

445600 profile image
445600 in reply to NannyDonna

That would be me to ! Only at weekend . Up way to early during the week thanks got the reply 😀

I’m on Mycophenolate plus low steroid dose also have HB plus under active thyroid and I have wine most evenings with my evening meal…. so far so good 😁 it’s a little pleasure that I enjoy 🏖☀️

445600 profile image
445600 in reply to Barbs51

Aww same as me but I’m aware we are all different ! I’ve been thinking lately could I have a little drink if I wanted to given the replies most seem to be able to tolerate it ! 😆🍷🍾

Florencian profile image
Florencian in reply to 445600

Why don't you try one?

445600 profile image
445600 in reply to Florencian

I will I’ve had the green light from my consultant so all good I do miss a glass of red thanks 🍷😀❤️

Bellissimo profile image
Bellissimo in reply to Barbs51

I’m on exactly the same meds as you and I have a glass of wine now and again

I find the tannin in red wine aggravates my joints if taken in large quantities (more than two large glasses) hic

445600 profile image
445600 in reply to stillsdisease

Good to know thank you for the information! 😀

Hi there

I'm on Lefludamide, Duloxetine, Hydroxychloriquin and Omaprozale and I have a glass of wine (or even 2) on the week-ends with dinner. Sometimes I will have a gin & tonic instead. I cannot say that it makes me feel any different. I have asked my Consultant and he says it shouldn't harm me as long as I stick to just a couple at the weekends. Ask your consultant if you are in any doubt and se what he/she says. My opinion is that we have have enough to put up with, and let's face life is for living, so as long as I don't over indulge (and that goes for anything!) I will continue to have my week-end tipple. The only time I wouldn't is if I was told by my consultant not to drink with a particular treatment.

So if your consultant says that it is okay, go ahead and treat yourself!

445600 profile image
445600 in reply to Bakbre

Exactly what I would do thx

I am on hq, I don’t drink much because I feel so ill after. Wine and spirits a definite no no. I do have organic cider and find that is not as bad. I will have a small prosecco at Christmas but again quality stuff. Lupus made alcohol my enemy long before the meds.

445600 profile image
445600 in reply to Hamptons

Thanks for the reply

I am on Mycophenolate and warfarin and yes I do drink alcohol. Not very often because I don’t drink at home but I have not changed my habits due to meds. I test my my own INR to keep on top of that if going out. I have never been told not to drink by my consultant and my GP say as long as I didn’t binge drink I’d be ok. It’s a personal choice or follow your specific medical advice. Lupus affects everyone in different ways so no one rule fits all in my opinion.

445600 profile image
445600 in reply to Fredwinston19

Absolutely I suppose I was just being very curious and nosey to what you all think 🤔

I'm on Azathioprine and low dose steroids. I know my limits ,which is a glass or 2 once a week. Anymore and I feel generally unwell for a few days mainly digestive wise. White wine and champers fine, red wine my favourite sadly is no go anymore.

445600 profile image
445600 in reply to Potatoheat

Awww mine would be a weekend treat ! 😀

I've never been much of a drinker but I do like a little at Christmas and on my birthday making sure I keep well hydrated in between. I'm on Methotrexate, hydroxychloroquine and anti-depressants.

445600 profile image
445600 in reply to Jig-saw

We all need a treat sometimes 😀

Hi, I have a drink at Christmas, Prosecco with a lot of peach juice. I cannot drink the red wine I love because it reacts with the morphine and my heart rate goes crazy and I flush badly and get a headache. Other than that I have a cocktail maybe once a year which has no effect whatsoever.

Cecily -

How are you feeling? How are you handling every other day Colcochine?

Hope you are a bit better.

xk

Hi Kay, oh dear I am wretched to be honest. I started a flare Monday and I feel as if I have been hit by a bulldozer. Fever, nasal oral and genital ulcers, rashes, headache and swollen joints. I have lost most of my voice and the blisters down my throat bleed when I eat.I thought now or never so opted to take the dreaded Colchicine at night as someone on the Bechets site suggested. I have had the most awful gut cramps but thankfully not the debilitating living in the loo that I have had before. My last flare lasted four weeks, it was so bad then I struggled to urinate or sit comfortably. Today, although I still feel rough the ulcers under my tongue have burst and the genital ones are smaller. So it’s promising. Thank you so much for asking. I really appreciate your kindness. I had an phone call appointment with the Physio for my leg weakness too. He refused to talk about my shoulder and arm pain caused when I stumbled when my leg gave out and said my insistence at requesting a face to face appointment was putting myself at serious risk given that I had AI conditions, was obese and elderly 🙄I know I am 60 next month but really? I stood my ground and hopefully the physio I see will be more helpful xxx

Oh, you really have bad flares. Honestly, with those symptoms, we would likely be given a televisit with rheumatologist for evaluation. It is as if you are completely on your own. Thank goodness you had the forum to advise you. The doctor needs to know how you respond to every other day. If the side effects are still there, he may have to move you to something else.

Have you tried fiber? Sounds crazy but colorectal surgeon just this week

told me to go back on my Acacia now that radiation is finished. I go from one extreme to the other. The fiber may prevent the cramping and diarrhea. It acts as a gel in the intestines. Acacia was a miracle for me but now I have even out again. We can work on it together!

😘 k

Yes Kay that is exactly how it feels, on my own, no one medically gives a damn aside from my Respiratory Consultant. I have repeatedly told Rheumatologists how bad it gets. They shave shrugged and said we can refer you to Gynaecology but I was under Gynaecology from the age of 11 up until 40 so I have absolutely no desire to get examined that way now. As I am only ever seen six monthly ( pre pandemic) the chan es of having a flare is minimal and the chances of having visible genital sores even less . Even if they were present the Rheumatologists have only examined me once since 2011 and they certainly would not look at genital sores. I have had two biopsies by GP’s who felt they could be herpes but that was all they tested for and of course they were negative. I have lost count of the times I have reached out to my GP for help. The only thing they do is prescribe local anaesthetic syringes and say speak to your Rheumatologist. There is no care at all.

I have never heard of Acacia as a supplement before. Does it work like Fibregel? Is it on prescription or can you actually buy it? I am so pleased you have had such excellent results on it and I am certainly willing to try it xxx

I discovered Acacia when looking at solutions for IBS issues. I had a diagnosis of IBS even though doctors always were ruling out things connected with autoimmune disease. I hated the fiber brands my doctor recommended.

You can just go to heatheribs.com on the internet. You can buy the Acacia on her site or on Amazon. She tells you exactly how to use it - got to go up very slowly.

Her tips on diet really help and when I saw the new GI doctor, she was not surprised I was so much better not eating raw fruits and vegetables and taking Acacia, though not sure she had heard of Acacia.

I think you should get on the soluble fiber and stable before trying colcochine again.

😘

Thank you I will get some and try it. I have tried many things for my gut problems but it has worsened lately due to stress. I was diagnosed with IBS when I was 18. I took Mebeverine and Colpermin capsules . They gave me Fibregel but it had the opposite effect. I just could not go at all and had to be admitted as a day patient for repeated enemas. Not something I ever want to repeat. I am going to continue the Colchicine as I really want to know if it genuinely reduced the length and severity of the blisters. Thank you for your support and advice Kay xxx

You’re welcome. Message me any time about the GI issues. It is constant work. Yes, things stop working or work too much - so hard. But you are left to do this on your own. Happy to share my experiences if it can help.

xk

I just found it for half the price on a UK site so I will definitely send for it next week. Neil just said to me “ you look dreadful” followed by “ you need a doctor” and we both just looked at one another because we both know it won’t happen. I will get through this the way I always do on my own. Any advice with my gut issues is very much appreciated Kay thank you xxx

Cecily - glad you found it. Read Heather’s online information so that you don’t send your sensitive gut into 😱. Start with a teaspoon and increase slowly. If you go from one extreme to the other - not uncommon- that gets tricky. You have to get fluid in your gut for the constipation but need the soluble fiber for bulk. I’m working on that now too.

One way to think of it is the nerves of your gut are over-active. And the signals get all confused. I wonder if that is why you are reacting so badly to the Colcochine?

Your IBS along with the UCTD or Behcets is double trouble. No wonder you look bad - unwell, is more accurate.

Xk

I was told I had pockets in my colon and that I would need monitoring as it could lead to diverticulitis, of course I wasn’t monitored. A few years prior to getting sick I began to have odd and debilitating symptoms. I was working as a Manager in a very busy and resistant Team and one day I just had such gut pain that anything I swallowed came back up. The pain would make me double over and sweat profusely. I was chairing a meeting one day and I was struggling to concentrate and passed out with the pain. I was rushed to hospital where they gave me morphine and ordered scans thinking it was my gallbladder. It wasn’t. A Gastroenterologist thought I had celiac disease but after tests and biopsies they just discharged me. I then began to work in a lovely team an hour from home. Everyday I would have to stop in a Tesco store and throw up. Again I had a gastroscopy they found what they termed bleeding thrush down my gullet into my stomach. Biopsies showed no thrush. Then I began to get chronic acid reflux. I tend to love acidic foods so I cut them out but it persisted. Another gastroscope and again bleeding thrush but biopsy results came back no thrush. Prior to the Colchicine I regularly got diarrheoa, undigested food then constipation with no seeming correlation to diet. As a vegetarian I eat lots of fruit, veg and salad. I have only KoKo milk alternative. I find that I am better on raw food, I do not eat a lot of bread but I have changed from yeasted dough to sourdough which I make myself so no additives or preservatives. I drink 3-5 litres of water daily. I seem permanently bloated and windy . I am burning from my throat right through me which the Colchicine has definitely worsened. I will definitely try the Acacia as I know from past experience the GP will give me Lactulose which has a dreadful purging effect on me or Fibre gel which bungs me up. I have tried many different probiotics but nothing has helped xxx

No, not Fibogel! Just looked that up.

Titters profile image
Titters in reply to KayHimm

May I ask what is Acacia?

KayHimm profile image
KayHimm in reply to Titters

It is soluble fiber. See my response to Cecily.

What an insult, Im 64 and not elderly as far as I'm concerned.

Honestly I laughed because he was just utterly desperate to put me off having a face 2 face appointment. First he tried telling me to go back to the fracture clinic. How ridiculous my tendons have healed very tight. My leg is unstable and the pain is coming from the back of the leg so I told him no I am asking for your help. Next he tried the “ you are a complex case” tack so I said that may be but I still need your help so the obese, and elderly and therefore at risk was his parting attempt. For once I refused to back down. I do understand that our NHS is on its knees but now services seem risk adverse so therefore unwilling to provide a service.

Good for you not backing down. If may help if someone massaged your legs to help loosen the tendons.

Thank you I really hope so xxx

445600 profile image
445600 in reply to CecilyParsley

Thank you 🍾😀

Think it really depends on your medication! I’m at uni so would miss out on quite a lot if I did it all sober. My doctor said drinking is fine:) I usually avoid it on a Sunday when I take my methotrexate weekly injection as a combination of the two gives me a very bad hangover !

You have so much going on at once. Where to start? Are you on a proton pump inhibitor? That could work wonders for your GERD.

I didn’t think diet affected my IBS. When I did what Heather recommended (my consultant haha) it made a difference. She will tell you to cook your vegetables. Can’t remember what she says about fruit. I used to stew apples in the winter. I still always peal fruits and vegetables. That is where the insoluble fiber is. My GI doctor, as I said, was not surprised at the enormous improvement from not eating raw vegetables and fruit. She said they are among the hardest things to digest. By definition our guts are over-reactive. Anything hard to digest can worsen them.

Poor you - impossible to feel okay when you have your GI issues.

Messaging with you reminding me to take my Acacia last night 😅. Almost forgot. I see the radiation oncologist Wednesday and hope I can report that my fiber magic is getting me back to an almost normal state.

Hoping so much you get better!

xk

I have sangria every now and then and on the few times we went out for dinner a 🍹 margarita

I don’t drink alcohol not because of my meds but because lupus has affected my liver and given me PBC I don’t fancy the idea of a liver transplant if I can help it 😁 I do miss the occasional drink

445600 profile image
445600 in reply to Chris21

Aww take care snd thanks for replying!

I just don’t drink anymore. It’s not the meds I only take 1 Tramadol at night so not much. It just totally upsets my system mostly my bladder it’s rather like having cystitis so no booze. Well except champagne that seems ok weird xx

445600 profile image
445600 in reply to CRYSTAL11

Enjoys the champers when you partake 😀🍾🍾❤️

As you can see by my profile pic, I do enjoy a wee drink! 😂 Life would be totally unbearable for me without a nice glass of red or a wee G&T!! Joking apart, when I say a glass it is just the one, maybe 2 and always with food. It comes down to the individual, how you feel about it. If it reacts with your meds? I’m fine with a couple of drinks and I’m on methotrexate, prednisolone, hydroxychloroquine, Nortriptyline and OxyCodone. Someone else on exactly the same meds might be totally different.

I’ve had RA & Lupus for over 40 years and my motto is - life’s too short. xxx

KayHimm profile image
KayHimm in reply to NanaFifi

My motto too! But, as you said, it depends on the medications you’re on and our individual differences.

Ingrid1234 profile image
Ingrid1234 in reply to NanaFifi

Hi,

Bear in mind that Oxycodone is a highly addictive opioid/opiate pain relief drug.

Gaps of 4 to 6 h between dosages are important. It also depresses respiration which can be a problem suffering breathing issues. Naloxone is the antidote for overdosage.

NanaFifi profile image
NanaFifi in reply to Ingrid1234

Yes, it’s good to be aware of what sort of drugs you are taking and what the possible side effects are. I’m well aware of what kind of drug OxyCodone is. I have a gap of 12 hours between doses as I’m on Longtec, which is slow release. I’m not getting sloshed or drinking till I pass out, I’m speaking about two small glasses of wine every now and then which has, up till now, not done me any harm.

445600 profile image
445600 in reply to NanaFifi

Thanks for your reply I don’t usually have a drink whilst on meds but I’ve had the green light!!! So all good snd I’ll certainly be joining you ! 🍾🍷

NanaFifi profile image
NanaFifi in reply to 445600

Cheers! 🥂xxx

While I am a bit of a light weight when it comes to alcohol I do enjoy a glass of something. At the moment its Pimms with strawberries. I am on MMF and Tacrolimus and various others and alcohol doesn't make any difference but I drink very little anyway.

Thanks I will be trying a little drinkie 🍷❤️

No, not since my heart attack January 2020, also now on cocodamol for osteoartharthtis, so chance would be a fine thing! I do have alcohol free wine and I have also recently found alcohol free Martini in my local supermarket. I do enjoy these drinks. How sad am I?

Roarah profile image
Roarah in reply to ChristineK

I found a decent dealcohol gin for g&t’s and Guinness zero has a great placebo effect for me too!

ChristineK profile image
ChristineK in reply to Roarah

Yes, I have found the gin too, in fact there are several brands. Not seen the Guinness though, and I thought that I was quite an expert. Well spotted! 😃

445600 profile image
445600 in reply to ChristineK

No not sad you’ve found something you enjoy ! 😀

ChristineK profile image
ChristineK in reply to 445600

This is true, and not that I ever had alcoholic tendencies, but I omitted to add that there is also an alcohol free gin too, so the list is endless! Lol

445600 profile image
445600 in reply to ChristineK

More 4 u 2 try 😀 cheers !

ChristineK profile image
ChristineK in reply to 445600

At least I won't get tipsy, lol 😊

I drink a fair amount. I had been told by my dr I could drink alcohol (I think…if not it’s too late). I’m on MMF and Hydroxychloroquine but I’m 18 and that is a drink-consuming age. 😂 I do pace myself and never drink enough to have a bad hangover (maybe light headache) and stop when I feel i might over do it. So please don’t imagine me downing whole bottles of vodka. 😂

Seeing the other replies I’m wondering if maybe I shouldn’t be drinking… whoops. Though as I’m heading to uni this year I suspect I won’t be drinking less ;)

445600 profile image
445600 in reply to redredblue

My consultant got back to me and said drinking isn’t a problem but not 2 many ! So I definitely will be having a drink this weekend 🍷🍾😀

I do not judge anyone who incorporates some wine into their health plan successfully, because none of us want to flare or feel sick. So I reckon most of us would keep in sensible limits.Interestingly, alcohol has always left me feeling poisoned soon after even drinking a small amount.

So I’ve always avoided it. Which makes you an absolute outcast in Australian culture!

I’m not quite as extreme as these ladies, but.