Alcohol and Sjogren's

[catherine1234]

Hello to all. Thank you to all of you for your many posts. It has been really helpful for me to read about your coping mechanisms and know I am not the only one out there with this horrible disease!

After a year of trying to figure out why I feel so awful all the time, a rheumatologist added ANA profile to my blood work showing a SS-A level of 236 U/ML. So welcome to the club, right?

I have gone gluten free, cut all the "fake/diet" food out, am taking all kinds of vitamins and herbs, and have always been an avid daily exercise nut. I do not feel this has helped tremendously but the disorientation and facial swelling is gone which is helpful. It could be attributed to the Hydroxychloroquine and Prednisone or the dietary changes or a combination. It is very hard to tell.

There are many other symptoms despite the dryness, etc. I just cannot decipher the triggers despite a daily food/activity log. Is alcohol a problem with most of you? It seems to be, but I am almost wondering if it CAUSES Sjogren's? Do any of you find that two or three days AFTER drinking one or two alcoholic beverages, your neuropathy, fatigue and red eye circles seem to worsen? Ugh I am SO frustrated! And the constipation is almost the worst one!

And I also find myself losing my temper very easily-is this a Sjogren's symptom or from the steroids (on 5 mg of Prednisone 2x day)? I seriously lost it with the owner of a Chik Fil A today because my gift card would not work-who does that?!! Luckily my kids were in the play area already and did not witness it. But they suffer as well because it seems I have no patience when everything flares up!

Any insights would be much appreciated. Sorry for rambling but it is my first post

[grammad97]

Prednisone can make us a bit edgy/ angry although your dose is low. It should calm down once you have been on prednisone for a bit. Its a great anti inflammatory and it makes me feel great but long term side effects are not good for us....

[SjoGirl]

Sjogren's dries out not just eyes and mouth but the body in general. Alcohol also dries one out and contains sugar which is an inflammatory (and impacts mood as it wears off) and all that can cause constipation. I suspect you will find that most Sjogies avoid alcohol.

[Styx]

Prednisone makes me the world's angriest person. 10mg isn't too much, but who knows.

Why are you taking prednisone long term though?

Styx

[Velcro]

I was a witch while on prednisone, and those times I had to up my dosage to 60 mg a day to combat flares, I didn't want to be around myself.  I can go from full out angry about something little, to a crying depression jag in 0-60 seconds.  Even on my 5 mg daily maintenance dose, I was very moody.  I've noticed since I've come off of it, my moods have stabilized again.

[catherine1234]

Are you not supposed to be in the prednisone long term? That REALLY worries me! Is over a month considered long term? My follow up with the prescribing doctor is next week so I will ask. What is the usual duration? Maybe I will just stop cold turkey for the weekend and see what happens...

Ugh I love my cocktails. It makes sense that the alcohol worsens the dryness issues, but how about the neuropathy and fatigue? Would the alcohol be a factor in this or could be that be a whole separate issue? When I say alcohol, I am talking one or two glasses of wine or one cocktail. And if it is the sugar that is the issue, then should we be avoiding ALL kinds of sugars (i.e. fructose as in fruit and plant protein powder)? The list of "the prohibited" is never ending isn't it?? How do all of you cope???

Thanks for all the responses!

[Sooki]

Just a note on stopping prednisone cold turkey for awhile:   Prednisone is one of those drugs that needs to be tapered when quitting.  Quitting abruptly can make things worse.  It's probably wise to wait until your dr visit to ask for a taper schedule to quit.

[jazzlover]

Ditto to the above comments... TAPER off the steroids with the help of the Dr. And give up alcohol as soon as you are able. It will only make things worse in the long run.

For one thing, it can grow yeast/candida which afflicts many with AI.

[Styx]

Catherine, suddenly stopping corticosteroids after continuous usage for over a month is a very bad idea, so please don't do that Tapering over a few weeks is warranted.

Long term corticosteroid usage above physiological levels is very dangerous, though 10mg is low enough that it may not lead to serious problems aside from (possibly irreversible) adrenal insufficiency.

But I would only use corticosteroids long term as a last resort.

Styx

[Dee]

Echoing the above you need to taper off the pred. Call your dr and follow recommended taper. Tapering down may improve the edginess. I have taken Xanex to help with that when on steroids.

[catherine1234]

Just as an update, I did call my doctor and she started a more aggressive tapering off so thanks for the advice!!!

[MirkeshCat]

Alcohol always made me feel 100 times worse since I have SjS. It destroys my sleep and makes me so much more fatigued. So I quit alcohol completely. Nothing anymore.

[LittleBlue]

I tried a couple of times to have a social drink with others........ both times the next day I felt like death, and worst I noticed I had swollen ankles and red dots and red spider veins running around the top of my feet and ankles. They disappeared after a couple of days. Maybe a coincidence, but I think not. I don't think it's worth the risk to be honest. Sjogrens dries you out, and alcohol dehydrates you, so not a good combination.