Quick question ....

[Aurali]

Good morning all, Just a quick question.... I rarely drink alcohol but when I do I feel awful the following day, this is literally 2 glasses of wine.

Does anyone else find this? I have SLE.

[DJK99]

Hi Aurali - in a word, yes! It makes your liver and kidneys have to work much harder - and they're already presumably working their bits off with the lupus - and your medication? Best keep away from it, as I really try to now compared to my younger years. As I'm sure you do, drink lots of water throughout the day... as a constant- essential for everyone, especially us lupees. Also - you might want to look into Milk Thistle (from a health shop) which his supposed to assist the liver in getting rid of toxins... especially after having a few! All the best, D

[Aurali in reply to DJK99]

Thank you so much for your reply, it makes a lot of sense! My daughter mentioned it as my son got engaged so turned up with bubbles, I only had 2 but felt so sore for a couple of days following! Yesterday we had a family funeral and again 2 glasses of wine and the same today. Just told my daughter she was right lol ( she loved that!). It is rare for me to deink alcohol but think I'll be sticking to my cuppa now!!

Thanks again and take care xx

[Aurali]

Oooh feel like I've just been told off!

From now on just call me Des!! 😊

Thank you xx

[Aurali]

I totally get what you're saying but no guilt here 😊

[Krazykat26]

Hi Aurali 🤗

I've worked with people who r dependent on drugs n alcohol n I certainly wouldn't class u in the dependent drinker catagory!! 😹

It is true though that even small amounts of alcohol r processed through the liver..so I would say if u makes u feel 💩that's the lupus saying its a no-no!!

Kat 😽😽 xx

[Aurali in reply to Krazykat26]

Thank you so much Krazykat, I was left feeling pretty down after I posted ☹.

But no I wont be drinking any alcohol! Just talked about replies with my daughter so feel better now 😁

Thank you xx

[Jmiller623]

Hi Aurali! I posted this answer 2 mos ago. I also have SLE. I do indulge occasionally - maybe once a month.

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 and dirty martinis. 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 there are times when life should be celebrated.

Hope this helps answer your question if even in a small way. Sometimes we just want to feel like a normal person so I call lupus the fun police disease.

[KayHimm in reply to Jmiller623]

The “fun police disease.” That is hysterical! I was just on vacation - avoided the police as much as possible. 😃

[Aurali in reply to KayHimm]

Lol 💙 this 😂😂

[Aurali in reply to Jmiller623]

Lol its so hard isnt it? Garlic is a bad one for me. I never drink more than 2 glasses (usually fiz) probably once in every 2 months so thought that would be ok but sadly not!

Luckily I do love my cuppa 😂

Rocking with the fun police 😂😂 xx

[Jmiller623 in reply to Aurali]

Biggest offender for me is rice. Don’t know why. Haven’t met another person with same allergy. And it’s definitely rice.

There goes sushi, Japanese, chinese, thai and most Indian food. Been trying orzo, cous cous, quinoa as substitutes. Cauliflower rice made me want to 🤮. I don’t know how people eat that.

I’m telling you lupus could be a prerequisite for the military based on how many restrictions we live with on a daily basis.

[Aurali in reply to Jmiller623]

I was advised to go carb free by my gp which I didn't find too hard and like you tried alternatives, didn't like quinoa and thought cauliflower rice was 🤮!!

But yes its really difficult sometimes and am no longer carb free but still make things like aubergine lasagne instead of pasta and prefer it 😁

I can eat rice though so you have my sympathy, not an easy one to replace.

Laughing at comments on here is such a tonic, I go on every day

Xx

[KellyInTexas in reply to Jmiller623]

My Colorado based APS specialist ( I still advocate you see her if you can) says 50% of her APS patients have MAST cell activation syndrome.

I don’t think mine is that terribly remarkable compared to some people.

I do have the clinical hallmarks . Some blood tests are positive.

Alcohol will kick mast cells into degranulation mode. ( migraines, and other symptoms I don’t really understand very well.)

My specialist says if you are hell bent on a drink- clean top shelf vodka is the best.

( I miss a very nice scotch mixed with Topo Chico on ice... )

[Jmiller623 in reply to KellyInTexas]

Agreed. I’ve been tested for MCAS. Tryptase was normal but hematologist said he had high suspicion and to get tested again. I’m on allegra twice a day. That seems to help. I don’t know what else could be done so I’ve given up chasing MCAS. Vodka is the one liquor I’ve noticed that I can drink without issue. Some whiskeys as well but not all.

Something interesting....a lot of domestic beers are brewed with rice. Some vodkas too so I have to make sure they are are made from grain/corn.

[KellyInTexas in reply to Jmiller623]

I’ve given up chasing MCAS also. It’s my specialist that will not let it go because it will be a deal breaker with IVIG. ( well, maybe not a deal breaker- that’s a bit extreme of a statement, but MCAS with APS patients tend to really not do as well on it. They tend to overly micro clot.

It was because of this she was trying to get Hizentra approved as opposed to standard IVIG.

She has a different “ special snowflake” protocol for patients like us. ( we are annoying special little snowflakes. We are cold all the time and fragile!😂)

[Aurali]

Could you explain APS please?

[KellyInTexas in reply to Aurali]

Anti phospholipid Syndrome:

It’s an auto immune disease that’s very closely associated to lupus ( in the lupus family and approximately 20% of lupus patients also have the syndrome.

A patient must fulfill the criteria for demonstrating antibodies, and demonstrate a clotting event have the syndrome according to the 2006 Sydney Revision.

In summary, antibodies tend to make the blood throughout the body too thick, and therefore can have have a propensity to form clots.

Anticoagulation for life is the standard treatment, and occasionally immunosuppression is added if a patient continues to form clots or has neurological involvement.

It is a hybrid autoimmune disease that involves rheumatology, hematology, and very often neurology.

[Aurali in reply to KellyInTexas]

Thank you for that Kelly, not something I'm aware of. My rheumy has never mentioned this so guessing I don't have it.

Xx

[Aurali]

Thank you.

[Lupiknits]

Never touch the stuff! I did pre illness but nooooo now.

It’s hard at times. A few years ago my son won a top notch award in his career, which involved a very posh do. Said son slid me his sparkling water so I didn’t look like a meanie when the champers came out.

When I’m asked by a doctor if I drink I just say “yes please”. They realise I’m joking when they ask the units and I say one over six years ago.

A long time, but there are moments when a glass of wine seems like nectar. A distant memory though.

[Aurali]

Yes I have reached this conclusion, if even a small amount has such an effect then it really isn't worth it!

Difficult as you say when you have a family celebration but hey they can drink & I can drive ...... 🙄😂

Thank you & take care xx

[Frosty1960]

Yeah used to enjoy a pint but anymore than 3 pints and im talking rubbish and wobbly legs. 🤣

[Aurali in reply to Frosty1960]

Haha same!! Not pints though 😂

[Barbaraanne42]

Hi I was actually under Professor Graham Hughes at St Thomas’ London. He was the one who found out about APS in about 1982, APS is also called Hughes syndrome.

My mom Barbara Ann had APS, she didn’t know until 1998 when she was seen in St Thomas’

Her history was 6 late miscarriages all at 6 months, 5 confirmed DVTs, Heart Attack, mini stroke, PE.

She also developed SLE.

She passed away at 60 with massive clots in her lungs and heart.

I now see Professor Hughes Son in law in Southampton, because it’s nearer for me than London.

Also wine in particular has sulphates in it, no good for lungs or other organs.

I don’t drink, I had a glass of wine last April at a friends I was violently sick and joint pain.

I stick to tonic water or sparkling water with lemon.

[Aurali in reply to Barbaraanne42]

Thank you Barbara, its just not worth it is it? Sticking to tea now! 😁

[MoyaP]

I’m so glad that you asked this question because I do enjoy a glass of wine but I now find that I often wake up with palpitations and generally feeling unwell. I did wonder if there was a link between SLE or the Hydroxy that I take daily.

[Aurali in reply to MoyaP]

Hi Moya, I'm not sure but as a generalisation from the replies I had is that our organs are already working harder with the SLE and when alcohol is added they then have to work even harder.

[MoyaP in reply to Aurali]

That makes sense. Cup of tea and a biscuit it is then 😂

[Aurali in reply to MoyaP]

Lol me too!!!

Take care xx

[Littlemisssunshine87]

I can’t drink alcohol anymore since becoming unwell, it makes me feel awful even after a few sips. Anyone who knew me before knew that I loved my fizz and presents were always bottles of wine 😂 I’ve been tea total for 3 years now and even if all these symptoms went away and I was ‘normal’ I still wouldn’t drink again. If it’s doing damage and isn’t enjoyable anymore then what’s the point?! I get similar response from sugar actually, anything that dehydrates me is a no no, I have Sjögren’s.

[Aurali in reply to Littlemisssunshine87]

I agree!! Its just not worth it is it?! My kids are happy.. .... mum can do taxis to and from pubs 😁

Take care xx

[Littlemisssunshine87 in reply to Aurali]

Honestly everyone was so shocked and constantly kept asking if I was sure I didn’t want just a little drink when I first announced I was not drinking anymore. But now everyone’s so used to it they’d prob be shocked and shout at me if I decided to have one. Those who love and support you want the best for you. It really isn’t a big deal, I can still have fun without it. Always a link about alcohol and fun, when really if you think about it if you need to have a drink to be fun then you mustn’t really be that naturally fun of a person 😜

[Aurali in reply to Littlemisssunshine87]

All so true, I only had a couple of glasses maybe once a month so dont really miss it now and being 57 I dont party anymore.

I get the same from friends (not family) ' just have the one'! But no I'll stick with tea 😂😂