Alcohol makes me feel like I have a terrible kidney infection and makes me feel horrible the next day even if it's just a sip or so. :(

I think it depends a lot on how old you are and how active your illness is.

If you are in remission, and young, it's probably okay in moderation. My drinking was probably a problem for about 35 years or so, off and on, but it did not really impact my symptoms. Even in flareups, in retrospect, I think it had little negative effect during my 20s, 30s and 40s... but, but, but....

I do know that when symptoms were active, it was definitely better not to drink. Those sound like fairly serious symptoms. I would probably stop drinking until they clear up.

For example, when I had pericarditis, I was ordered to completely abstain from alcohol, and for good reason-- lining of heart was impacted, didn't want to do anything to make it work harder, exercise was also forbidden for at least a month. (Everything that raised my heart rate was essentially forbidden. Catalyzt at 20 years old to girlfriend: "Please kill me now!")

Also, if you are taking prednisone, beware: It sometimes can mask the effects of alcohol. I remember thinking, "Wow. When I take 10mg per day, I can drink seven white russians and feel exactly nothing." Er, that was not one of my better ideas. Fortunately, I compared notes with a buddy who was on prednisone for a kidney transplant, and he noticed the same thing, so we both cut back... and probably saved our livers!

My own theory is also that if you are on blood thinners, really, you shouldn't be drinking any alcohol at all if you are over 50 or 55. Just my own experience... I know my memory got way worse a few years after I started blood thinners, as did the brain fog. It improved a lot when I stopped drinking. And improved again when I started CBD. Another friend takes blood thinners, and when he drinks, he seems kinda senile... like, just bitching about the same crap over and over again... and I can see that I was EXACTLY the same way when I drank on blood thinners.

If you have MCTD, there's a higher chance of some weird problem in tiny little blood vessels, whether it's blood clots, cerebrovascular problems, etc., and the odds get worse as you get older for everyone anyway. The more risk factors you add, the greater the risk-- thus, Coumadin and alcohol is probably no-go. And probably, there are a lot of other drugs that increase the risk for someone with MCTD who drinks-- even moderately. At the end, I was only drinking about three drinks a day, but I was still kind of a mess, barely taking care of business. And wracked with guilt because deep down, I knew I was doing something that probably made the impact of the illness worse. I haven't drank in three years, don't really miss it, and feel way better mentally and physically.

If you try going without, make sure to do the experiment for at least 90 days, that's when you're liable to see an improvement.

Hope that's helpful, great question, thanks for posting!

I appreciate the great feed back. It's such a social thing in my friend circle to get together for a drink after a day on the lake or snowmobiling, this always was such a nice relaxer for me. Now it is so uncomfortable its not worth it. So far I have not gone on any meds, waiting on the retina specialist to give an ok on taking Plaquenil. My Rheumatologist thinks this medication can help my overall symptoms.

Another thing to consider: Alcohol-free beer.

Technically, this is discouraged in AA, but I really like the stuff, and it does help in social situations.

Bitburger Drive: Absolutely zero alcohol, taste is... meh.

Less than .05% Alcohol:

1) Becks NA = Excellent
2) St. Pauli NA = Excellent
3) Old Milwaukee = Very Good. And that is really weird, because Old Milwaukee with Alcohol is pretty terrible, as I remember!

I get the same thing. Best to avoid.

I believe what Katalyzt says about blood thinners and alcohol but I still have 2-3 beers each night. Why? Because it's the only time I feel relatively normal. Alcohol works much like prednisone for me. I did a prednisone taper on my own and 30mg worked very well, 25 was ok, but at 20 there is little difference than my normal 5-10mg. Wondering...has anyone else experienced this?

The same goes for turmeric. It increases bruising of the skin but helps with bloating and inflammation. My doctors are afraid to lower my dosage of Brilinta, probably for legal reasons. I will do that myself if I get through the next month or so.

September of 2016 there was discovery of a large aortic aneurysm which could not be fixed until two stents were replaced and then had to wait until the stents healed over before stopping Brilinta long enough to do the aneurysm. Last month my blood went crazy and a CBC showed seven out-of-range results including anemia and four kinds of misshapen red cells.

I am becoming convinced that the cause of most autoimmune disease is in the gut. Gas and bloating are really a lot worse than before.

If you have any of the following chronic conditions, you might be at greater risk for developing anemia: (From Hematology.org.)

Rheumatoid arthritis or other autoimmune disease
Kidney disease
Cancer
Liver disease
Thyroid disease
Inflammatory bowel disease (Crohn disease or ulcerative colitis) Yeah, I have IBS also.

Stopping dairy and gluten does not help. A paleo diet seemed to help, but I will be 75 if I get through the year and since that seems to be in question...nah, I ain't gonna limit my diet much.

I see some of you have gut issues also. How many of us do? I know we all have different symptoms but it would be interesting to see how many have the bad bloating and gas issues.

Hey, look who showed up to school the new recruits! Man, am I glad to hear from you! Whoo-hoo, OH is in the house! How's it hanging, you crazy...

Well, let's call me the crazy old fart. Er, yeah, speaking of flatulence... fortunately, it comes and goes, but when it comes... it's like I've got a personal propulsions system. I am seriously concerned about my own contribution to global warming... my '91 CRX flies through smog check with less emissions than a Prius, but hook me up to that thing on a bad day, my registration would NOT be renewed. I mean, the dogs look at me with respect and probably a little fear, like, "Dude, I didn't know any animal could do that. Please use your great powers for good and not evil."

Whether gut problems are the *cause* of MCTD or not, I don't know-- but I think you are on to something, and the gut plays a much bigger role in the *mechanism* of MCTD than is commonly realized. My exhaustion is worst after eating, my headache is worse after eating, and if nutrients were not being absorbed properly, that would explain a lot, wouldn't it?

Listen, I'm glad you posted about your fear of not making it through the year-- that's what a support group is for-- but that's one bet I'm not taking. I'm putting your expiration date at well north of 80-- if you could figure out how to migrate off the old website and get onto this one, your brain fog is not that bad.

Rough go with the stents. That sucks, sorry you are dealing with that. One of my buddies told me that recovery from heart surgery is at least a year, even if you're in your 40s. He also said that depression is almost inevitable after heart surgery, the incidence is like 98%. They don't know why, but it's a direct physical consequence. Watch your six, stay on top of that symptom, just like all the others.

I hear you on the diet and the drinking-- it's a very personal choice with tradeoffs on both sides. I bet my nonalcoholic beer is not helping my gas much. Maybe try something else-- a Tequila lemonade, whisky and water. Interesting that alcohol works like prednisone for you... I felt fantastic for the first year after I stopped booze and weed. Then a year or 18 months later, my brain still kept getting better, but I was much weaker. I figured that the weed had been suppressing my symptoms, but maybe alcohol helped, too, at least physically. Started the cannabis oil (CBD) after being sober a little over two years, and that was great last summer... now it does not work as well, though it still helps a lot in the morning But who knows? Maybe the booze was doing something for me physically even if it hurt me mentally. I was in remission an awfully long time.

Hang in there, man. We need as many people as possible in the over-60 club (which I am joining in October.) Keep us posted, let us know how you're doing.

Alcohol in moderation is OK for me but definitely increases my inflamation response... so I limit alcohol to a glass of wine at dinner, When out drinking with friends or at a party I limit myself to drinking single-malt whiskey (blends probably work just as well) which for some reason (perhaps it's the purity of the drink?!) doesn't seem have as much of the side effects.... Better still is cannabus ... which seems to reduce inflammation and pain ..... If you live in one of the states with legal cannabus that is ;-).

Thank you for the great feed back on this

Hey, Katalyzt

It's good to see that this group still has a decent amount of activity and your input is always excellent.. The good news is that the Hematologist found nothing scary with ultrasound and another 12 vials of blood tested. She agreed that my MCTD is the likely cause of the blood issues.
As for life expectancy, I am good with a couple years if it works out that way.

The depression you mentioned has happened as I sat on my rear from late September until June
and played Draftkings and read novels. I found myself tearing up over any little thing that had emotional content. I never get really low, just emotional... and that has passed.

Does anyone recommend Methotrexate? All I know about it is what some have related on this forum. Prednisone has thinned my skin badly. Looking for an alternative if possible.

Please continue posting personal experiences with the disease and what has and has not been beneficial. We learn a little something from each person who contributes.

Carpe Diem

Very happy to hear about the ultrasound! All I know about methotrexate is that I only know of one person it worked for, and she says it totally eliminated her symptoms. She didn't have MCTD, but had another connective tissue/immune disorder, I forget which one, and she swore by the stuff. Everyone else here, as you've probably noticed, kind of seems to think it sucks-- lots of side effects and can't tell if it's working or not.

The depression, as you describe it, is-- I think-- very much like what my friend had, but oddly, now that I think about it, I've been feeling that way a lot myself. It's never like I can't get out of bed or anything, or that I have to stay home from work or ditch sports, not that kind of depression. At lunch I was totally choked up, but then I got home, and hey-- there are our little dogs, and my wife is swimming in the pool, and I felt much better and was much more cheerful. It's not like, say, a breakup with a woman when I was in my 20s or 30s-- that was awful, blotted out the sun.

Little things are definitely getting to me; I get tearful... mmm, not every day, maybe every other day.

Some of that probably has nothing to do with health. It's probably my 60th birthday coming up and a lot of events taking place on the geopolitical stage. No matter what your politics, I think we'd all probably agree that this is not the world we thought we'd be living in when we were north of 50. I think I feel like I need to do everything I can to cheer up my younger friends, help them stay hopeful so they can help build a better world, but... I feel like I'm not being honest, because I'm not real hopeful.

Which is weird: I've generally been very hopeful since I stopped drinking. So I don't know what is the illness, what is just the zeitgeist of the times... but it's a funny kind of sadness, that's for sure.