Has anyone got any information as to why alcohol ... - LUPUS UK

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Has anyone got any information as to why alcohol is simply a NO NO. Makes me feel so sick .....

Lisalou19 profile image
47 Replies

I have read posts about this quite a few times but wondered if anyone has ever received any information as to why alcohol makes us feel so poorly?

I had 3 Gin & Tonics last night and I feel so sick, to the point I can not sleep. I never feel like I have a hungover its more of a persistent sick feeling in my stomach. Each time this happens it clarifies for me why I don't usually drink!

Also the alcohol sends my skin rashes in to overdrive. Maybe alcohol triggers an immune response?

It does make me feel a little sad because I used to love having a drink and after a few doing a roll poly or a hand stand. 38 going on 98 here :-(

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Lisalou19 profile image
Lisalou19
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47 Replies

I’m guessing it’s a liver and pancreas related issue LL. I can’t imagine managing 3 GTs at all - but I do like one - which is generally fine for me. I use the slimline tonic though as the sugar load would be too much.

And just now I’m battling glucose intolerance so it’s no alcohol (I very unusually had 2 glasses red wine last night as son and his partner are staying ) and nothing sweet at all inc fruit. I think with Lupus and all CTDs - alcohol absorption is not as straightforward because of the changes to our billiary systems. Also - can’t recall - but it could be meds related if you’re on immunesuppression. X

Lisalou19 profile image
Lisalou19 in reply to

I feel like I’ve drunk a whole bottle 🤢

I would feel like this even if I had 1 and that’s why I stay clear of it.

I reckon you could be right and it’s something to do with how we process it!!!

Gosh 6 years ago I would have drunk a whole bottle of vodka no problem

Xx

in reply to Lisalou19

Yeah but actually LL - was it no problem really?! I was same as you when younger ie teens and 20s but as soon as childbearing started I couldn’t hack booze or fags at all. Maybe the lesson is that we reap what we sow? I actually had to be hospitalised as a teen for alcohol poisoning and pumped out! Heaven knows that this did to my body - given I was already an autoimmuner.

Not many people could hack a whole bottle or even 3 g&ts unless they were a teenager or an alcoholic. So maybe your body is actually doing you a favour and protecting you very effectively by making alcohol a no no. Our bodies can be very rightly judgemental! x

Lisalou19 profile image
Lisalou19 in reply to

I’ve literally died all day. I think your so right for me to accept that alcohol is a no go zone!!!! I honestly can see why I never drink. Sometimes you forget and think I will be ok . I guess not.

And if I think about the number of medications I’m on then I think it’s fair to say of course it will make me ill.

So 2019 will be remembered for quitting smoking and no longer enjoying a drink maybe twice a year.

I think I need a hobby 😉xxx

in reply to Lisalou19

Using your hands for crafting - especially gentle crafting such as crochet and embroidery or modelling - has been a good hobby for many - especially ex smokers.

For me it was always singing in my old island choirs. But since I relocated I haven’t felt like going out on my own in the evenings. Since then Sjögren’s and CTD overlap have affected my larynx and I get breathless and cough so have given up this favourite hobby but if there was a choir I could walk to I’d think about joining one again as I think it’s good for my lungs as well as my soul! X

Lisalou19 profile image
Lisalou19 in reply to

Well I can’t sing, I’m not creative. Don’t smoke, don’t drink .

Good job I don’t actually associate Christmas with drinking so it’s no big deal.

I’ve brought my son some creative bits for Christmas, so I may find my niche

Xx

in reply to Lisalou19

Finding a therapeutic niche is really good LL. I used to dance and sing - neither very well but they both made me happy in different ways. I hope you can find one that is absorbing. X

in reply to Lisalou19

Ha, ha! 🥳

PMRpro profile image
PMRpro

Um - if I had had 3 G&Ts I'd feel pretty mangy I think! Like TT one is enough - doesn't stop me going on to a glass of wine with dinner though.

Not wanting to encourage you - but does it depend on the gin or the tonic you use? With gin the aromatics vary from one brand to another - and years ago I used to develop a migraine and violent vomiting if I drank even small amounts of schnapps flavoured with herbals. Something there was a problem, never worked out what though. And I would have a similar though more delayed reaction to certain red wines - almost certainly histamines involved there. More care on the wine selection and some antihistamines reduced that a lot - as recommended by the immunologist.

Lisalou19 profile image
Lisalou19 in reply to PMRpro

First time I’ve ever drunk gin. I can’t tolerste just 1, vodka or wine or Jack Daniels. I was covered in a rash after 1 Jack Daniels so thought I was allergic to alcohol.

It doesn’t matter how much or what it makes me feel awful.

I guess the moral is just don’t drink. This was my first beverage since last Christmas. That’s how sick it makes me I just tend to stay clear xx

Lupiknits profile image
Lupiknits

Haven’t dared touch alcohol in years! For me, it’s oesophageal and stomach problems. Even when my son won a prestigious award I was the one with fizzy water ( and eying champagne as if it was an old sweetheart)

So, I really don’t know, but hope you can find a small but suitable and safe tipple x

Lisalou19 profile image
Lisalou19 in reply to Lupiknits

This feels like it just sits in my stomach rocking backwards and forwards, almost like being on a boast.

I think I will just say NO. Every time I try I get the same feeling.

Bye bye roly poly lisalou

😂xx

Lupiknits profile image
Lupiknits in reply to Lisalou19

It’s sad isn’t it? However, better than the consequences x

Lisalou19 profile image
Lisalou19 in reply to Lupiknits

100%. I’ve felt rotten all day. No more x

in reply to Lisalou19

👏👏👏

Buckley123 profile image
Buckley123

Mate honestly I used to be able to drink I had two paper cups of Prosecco at Halloween and I threw up from 11 -3am so I’ll my skin burning hot couldn’t cool down. I’ve had to give it up now xx

Lisalou19 profile image
Lisalou19 in reply to Buckley123

No more for me. I can’t do this ever again 🤢x

Krazykat26 profile image
Krazykat26

Hi Lisalou

Have a Google for quinine..it's found in tonic water..n used to be drunk to ward off malaria!! Ring any bells? Hydroxy is quinine..tonic water is quinine..n I think I remember that u couldn't take hydroxy? Just a thought..although now I've read that u can't drink other spirits either so that blows my idea out the water!! 😹😹

Just out of interest..the consultant psychiatrist that I used to work with treating drug users used to prescribe quinine for heroin users who wanted to go cold turkey..or were experiencing withdrawal cramps!! That was years ago!!

Maybe it's the spirits that don't agree with u? U could try a natural cider or a decent beer if u still want to do Roly poly's n handstands!! 😹😹Xx

in reply to Krazykat26

Interesting - I knew that Low Dose Naltrexone/ LDN is used off licence to treat autoimmune diseases and is licensed at higher doses for opioid addicts in rehab I believe because it stops the opioids working. But I didn’t know that about a Hydroxy. I couldn’t tolerate it either it gave me a slow form of anaphylaxis. I did get some LDN but it’s still in the fridge untried as I don’t want to mess with my Levothyroxine dose!

Lisalou19 profile image
Lisalou19 in reply to Krazykat26

Omg 😂😂😂. I wish I could post you to me . Your personality is amazing. You make me laugh sooo much.

Maybe I will just do meditation roly polys and hand stands .

I went to a business meeting years ago with my ex. He went to introduce me to this guy and he said he couldn’t see me. Then all of a sudden he saw me roly poly past them across the floor 🤣🤣🤣🤣🤣

Now that’s the me I really miss.

Xx

weathervane profile image
weathervane

Hi lisalou , i very rarely drink because of medication , however i did have a 1/3 of a glass of wine a couple of months ago and i felt unwell and my heart began to race , so thats it , i quit 😩

Lisalou19 profile image
Lisalou19 in reply to weathervane

I’m quitting with you. It’s not a hung over feeling, it just feels like poison.

Such a shame though , something else crossed off the list 😕x

Hi LL, sorry your feel ill. A Lupus Hangover?

I agree with everyone regarding alcohol and livers, etc. I don’t drink (not a drop) but I also don’t drink soda pops. The regular soda has too much sugar and the diet soda’s sugar substitute is known to be very hard for the liver to process. I try to eat very clean to help my poor liver out and yet they keep telling me that I have liver cirrhosis? Best of luck to you. I hope you are feeling better about now? I would imagine this makes going through the holidays more difficult until you figure out what you can tolerate. Merry Christmas to you LL. 🙏

MEGS53 profile image
MEGS53 in reply to

Hi. I'm also having liver issues and I would be grateful if you could say more about the Drs saying you have cirrhosis, as this sounds extreme to me. Have they done any tests to confirm this? Thank you.

in reply to MEGS53

Yes. Their cirrhosis diagnosis is after testing. I’ve had suspicious out comes with liver testing for almost 5 years now. But my last set of labs was the first time any doctor (my Rheumatologist) said it was cirrhosis. They did say the numbers were on the low end, so they weren’t too concerned. For me, I’m concerned. As I say, I try to avoid anything that would be hard on the liver and have done so long before the first suspicious lab. And I don’t drink. Not a drop. My life style is not one to drink, ever, or abuse other vices. No smoking, no caffeine. Hardly, if ever, use any over the counter meds, etc. So having liver cirrhosis is very concerning to me, even if the numbers are low. 🤷🏻‍♀️

Lisalou19 profile image
Lisalou19 in reply to

I don’t drink fizzy drinks either.

I think I’m done with trying to tolerate it now. Literally still feel sick now.

That little bit of pleasure is not worth feeling this way.

Merry T Total Christmas to you too 😉

Xxx

in reply to Lisalou19

😆😆😆😆 Ditto!

KayHimm profile image
KayHimm

Only you, Lisalou, would have the honesty to ask about our alcohol tolerance after she has been to a holiday party and enjoyed too many gin and tonics. Firstly, I can’t help but smile that you are feeling so much better that you could stay at the party long enough to have three drinks.

I think the alcohol intolerance has many causes. With me it has been age-related and neuro-related. When I have even mild weird head stuff, I get a pseudo-hangover from even a glass of wine. That is apparently common in people with migraines, though I don’t have typical migraines.

Here is the truth: I can drink when I take prednisone. Neurologist mentioned something about antibodies, blood brain barrier and helping my brain that was over my head. Not sure I will ask him why the prednisone makes me more alcohol tolerant. He would probably tell me it was « functional. » 😅

I am in a good phase and will raise a glass of wine to you and your improvement this season!

😻k

Lisalou19 profile image
Lisalou19 in reply to KayHimm

Functional 🤦‍♀️ 😂😂

I just need to accept it’s a no no. I was in such high spirits last night, no pun intended 😉

To wake up feeling like this is rather disappointing.

I’ve been like this for approx 5 years. Nothing I try goes down well.

I think I shall become a phantom drinker 🥳

Xx

Lupiknits profile image
Lupiknits in reply to Lisalou19

The phantom of the cocktail bar is here 🎶🎶

🤷🏻‍♀️idk, the doctor never went into it further. I’m such a ‘prissy’ eater, I’m not even a tea totaler. Well, an occasional herbal tea if I’m ill with a cold or flu. 🤣 But yes, if cirrhosis is basically a liver dying off (or damaged, whatever) then of course it can happen in other ways than just alcohol. I’m just not sure why mine is a problem. I’d love to know why, so I can try to reverse it.

MEGS53 profile image
MEGS53 in reply to

Hi. Thanks for sharing with me - it is a worry and I'm sorry you're going through this.

I've recently been dx'd with non-alcoholic liver disease and, although I admit to having had 2 glasses of wine most evenings in the past, I've been tea-total since last May. I have a very clean diet, don't smoke, not diabetic/pre-diabetic, was very sporty until my late 40ies and I'm not overweight. My liver consultant tells me that more than alcohol underlies my liver issues (although he's very happy that I now abstain from alcohol as this certainly doesn't help) and he's 'keeping an eye on me'. He thinks I may have a problem metabolizing lipids or a general problem converting food to energy as I also have what might may be hypoglycaemic attacks when I shake and tremble for several minutes. I also wonder whether I'm hypo-thyroid, but this has been tested on several occasions. I'd be very grateful for any input from you lovely people.

in reply to MEGS53

Thank you Meg, I hope you find your solutions.

Btw, I am hypoglycemic. I also have thought over and over that I may have a sluggish thyroid, inherited from my mother who had thyroid problems, but my thyroid tests keep coming back clean. Best of luck to you. 🙏

MEGS53 profile image
MEGS53 in reply to

Ah, that's interesting! Thank you and best wishes to you too.

in reply to MEGS53

If you find something out, let me know, please.

MEGS53 profile image
MEGS53 in reply to

Will do - I see my rheumy at the beginning of February for review.

Geordie-Y profile image
Geordie-Y

Lisalou 19,

I’m not a doctor so I don’t know the specifics of this but alcohol thins your blood so it stands to reason that as Lupus is an autoimmune disease and therefore lowers your resistance to infection then I would think that reducing your blood definition is going to reduce your resistance to infection.

I think alcohol dehydrates you and can cause simple things like headaches to feel like the worst migraine ever and as has been well documented over the years causes individuals to overreact.

It’s actually quite good from your point of view that you can have two or three drinks as the combination of drugs I take causes projectile vomiting if taken with even small amounts of beer never mind spirits.

So enjoy it at the time and try not to go over what you think may be your limit.

Cheers

George

Cann profile image
Cann

Liver, kidneys and pancreas can struggle or it could be the gluten in beer or the sulphites in wine - allergies. Alcohol definitely puts a strain on the liver and if immune problems with liver, kidneys or pancreas - it is a no, no! I just have fruit.

Oshgosh profile image
Oshgosh

Yes, I’m having the same issue.

Used to love a drink.

Have now abandoned thoughts of alcohol.

Am on Myclophenate- 4 th week.

Advised to have no more than 7 units weekly.

Didn’t have any alcohol until

Had a vodka last week,felt nauseous plus plus.

Went to bingo,had 2 water first - ok

Then 2 diet cokes.just felt so sick.

A. Presuming it’s the Myclophenate causing this as it’s only just started in the last month

Jmiller623 profile image
Jmiller623

I’ve experimented a lot with this. I’m a glutton for punishment. In my 20s, I always had the worst hangovers but definitely over indulged. This was before my diagnosis.

Strict no nos for me are beer and red wine. Fermented products, yeast, phenols and tannins are huge triggers for me. Even cranberry sauce sends me over the edge because they have so many tannins. I think sugar in drinks also effects me poorly. I get extremely tired at first, then sick/nauseous then swollen (probably from vasodilation).

I stick to white wine, dirty martinis or neat bourbon. No mixers for me. Italian red wine is more tolerable since it doesn’t have as many tannins as say cab sav, Merlot or red blends. No more than 2 drinks at a time. Of course, alcohol is a poison but it is the season to be merry.

KayHimm profile image
KayHimm in reply to Jmiller623

Love this doctorly advice: Dirty martinis, white wine and neat bourbon!

I actually agree with all of the above except the « dirty » in the martini. Love to tease my niece about how this really shows the difference in our eras.

This may sound nuts, but I can handle alcohol better since I have been on Propranolol. 🥳

Gotta’ live

😍k

Jmiller623 profile image
Jmiller623 in reply to KayHimm

Beta blocker definitely improved my quality of life. If a beta blocker gives you energy, you know something isn’t right with your vasculature/nerves. They usually really take it out of people.

In regards to dirty martinis, I really really like the taste of olives. The saltier, the better.

Lemme tell you....physicians are probably some of the worst offenders of over indulgence. It’s well established that they have high rates of substance abuse due to inability to cope. We get an emotional and physical beating daily. Go to a physician holiday party. It’s a show.

KayHimm profile image
KayHimm in reply to Jmiller623

Haha .. very interesting about the nerves. Medicating someone like me with autonomic dysfunction can be tricky, so my rheumatologist preferred the neurologist decide on the medication. He chose the beta blocker and said it could also help my head. Hey, just ran into him a couple of hours ago. When I answered that I am doing great and that it feels like the propranolol is giving oxygen to my brain, he said that wasn’t exactly how it worked, but that it was improving blood flow. Hey, I think blood is good for me! So it isn’t more energy, it is just like a new head. 😅 Does that makes sense?

I like the taste of olives too. I just order the martini dry, with extra olives.

Jmiller623 profile image
Jmiller623 in reply to KayHimm

That’s exactly what is happening. After my first dose of propranolol, I told my doc I feel like I’m getting more blood flow to the brain which does equate to more oxygen. Propranolol is also the only nonselective beta blocker that crosses the blood brain barrier. My vision improved almost immediately like 30 minutes after my first dose. Some of my asymmetric swelling improved in one day.

Beta blockers slow down your heart to allow it to be filled completely so you get a nice strong voluminous pump each time. Helps with blood flow by dilating vasculature especially in those with excitatory autonomic neuropathy, sympathetic overdrive or loss of vagal tone (all which cause extreme hypertension, vascular constriction, spasms). Beta blockers basically negate the effects of dysautonomia. You just have to pray it doesn’t swing the other way where your parasympathetic is overactive. This will tank your blood pressure, cause migraines and swelling almost like anaphylaxis without the face/throat swelling.

Having allergic reactions while on beta blockers is like doubly reducing your blood flow since your heart rate cant compensate for low blood pressure. Cardiac output/blood flow = heart rate X stroke volume. If you vasodilate everywhere, you need more output which means increased heart rate but with beta blockers, this is not possible. Just be mindful of this.

KayHimm profile image
KayHimm in reply to Jmiller623

Thanks, JMiller! So far, getting, like you, the benefits. Blood pressure is down and my head is doing lots better.

Will be mindful if I come across anything I am allergic to.

That is amazing that your vision improved.

😘k

KayHimm profile image
KayHimm in reply to Jmiller623

Was referring to hypertension when I said it was tricky to medicate

redredblue profile image
redredblue

So.... can you not drink alcohol with lupus?!?!

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