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ihate2shave
06-26-2006, 08:15 AM
What's the word on this? It's hard for me to get anything done without a good strong cup in the morning. Sodas I can live without. An occasional glass of tea I like. A friend of mine (the one I mentioned elsewhere who's been in remission 20 years) says all her SLE pals agree, caffeine is like "the devil." She never touches coffee. I admit, her skin is beautiful which may be related to no caffeine. She said when she lived in England for a year in college she stopped drinking sodas (which she previously drank like water) and she's convinced that's why she went into remission -- she doesn't think it was the absence of sun.

I asked my rheum and he says in the scheme of things a cup or two of coffee every day isn't a big deal. He says the same thing about an occasional glass of wine (I'm a social drinker only, maybe drink 2-3 glasses a month.)

What's your thought?

pinkjmf
06-26-2006, 08:32 AM
I have to have at least one cup of coffee in the morning. I love sweet iced tea.I drink that probably more than I should.The only effect it has on me is that if I don't have a cup of coffee in the morning I get a headache.
I don't drink, so I'm not sure about the effects of alcohol.
I haven't had a flare up in 2 years until recently and that was because I was in the sun to long.

debann
06-26-2006, 09:25 AM
I love coffee with caffiene. I think your doctor has the right idea. I've tried life without coffee and it didn't seem to make one bit of difference in the way I felt except that I felt I was denying myself one more thing I loved. You will find an article almost every other week about the horrible or good effects of coffee and many other things we enjoy in life. I believe there isn't good science that tells us we shouldn't have our coffee in moderation. I also have a diet coke daily! Good luck and if you decide to drink coffee....enjoy it without guilt. Debann

ButterflyRN
06-26-2006, 09:30 AM
I love my starbucks!!! I think it's all about moderation. Don't go overboard! Same with alcohol. I'm a social drinker too. I avoid drinking anywhere close to the time I've taken any meds or if I have to take some within a few hours after. You'll learn what is best for your body! :lol:

debann
06-26-2006, 09:47 AM
Like I said I love my coffee but I can't handle any alcohol with my meds. I feel weird after just one sip of a strong drink. I can drink a light beer but only one and wine gives me horrendous headaches after just a little bit (but I can take communion wine OK) I wonder why that is? debann

janefrances
08-07-2006, 07:22 PM
I only drink caffeine when I have a migraine, no other time. It works perfectly for me. I get flashing lights, colored lights, and something called a fortification effect that blocks my vision in the right eye. I immediately make a pot of caffinated coffee, or stop at the nearest store and get a giant coffee. Within 1/2 hour, my visual symptoms are gone, though I still may have a residual headache. I never drink caffeine otherwise, as I am afraid this "treatment" would no longer work! I don't have to addd another drug to my aresenal, and the most it's cost me is about $3.00! I would be interested to know if this works for anyone else. I never had migraines until the lupus, and I found this treatment for myself sort of by happenstance, though doc thinks it is fine - why not it works.

ihate2shave
08-07-2006, 07:31 PM
You're right on the money...my mom used to get migraines whenever she tried to cut back coffee -- she ended up giving in to her 8-10 cup a day 'habit'. And doctors at that time (70s) treated migraines with caffeine pills. My mom said the same thing you do, why take a pill if a cup o' joe will do the trick? :o
P.s. - doctor said it worked by relaxing the blood vessels in the head, which cause the pain when constricted.

peach224
08-08-2006, 05:24 AM
You know, my doctors told me to cut caffeine out of my diet when I first got sick and they still didn't know what was wrong with me, so I did. It was hard because I was drinking 4 or 5 diet cokes a day. The first couple of months were killer. Now I can go days without caffeine of any kind. If I am having a bad day or a morning where I am having a hard time getting moving, I find that a mild cup of coffee with cream or a Starbucks Latte is a nice pick me up without making me too jittery and it doesn't make me sick or anything. When I feel a migraine coming on, I can usually slow it down by downing a full can of coke or a strong cup of coffee, but I can't stop the headache completely without Imitrex.

As for alcohol, I only drink occasionally and I try to plan for it. I will not drink if it is close to my medication time. I can't drink wine because I am allergic to sulfites, so that makes that easy. I find it very easy just to say no too, even when in social situations, a lot easier now then when I was younger.

Oh yeah, and as for great skin, a good skin care regimen (that doesn't have to take a lot of time) will work, especially one that includes occasional gentle microdermabrasion. And drinking lots of water.

jaynedarcy
08-09-2006, 11:48 AM
I love my once a week starbuck's. I'd drink it everyday, if I could, but I am nuts for the double shot frappacinos and that would lead to a whole new set of problems.

My doctor constantly lectures me about the diet soda. He said that's not any better than regular soda. He's also what I call a "purist" dietician who doesn't believe in any kind of diet food. He bribed me recently. He said if I didn't drink any soda for a month, I could have my natural peanut butter back. Needless to say, I'm at two weeks going on three. I want my peanut butter back! oh yeah, and my starbuck's. lol

hatlady
08-11-2006, 04:54 AM
Oh man....give up caffine?

I did without - decaf only - for several years. When the lupus headaches started, I learned that for me, caffine plus aspirin helped more than other "stuff" - so I have started drinking it again.

Starbucks is good, i prefer Caribou! Give me my "half-caf" with a bit of milk in the morning, and mayb a latte once a week...mocha if I'm feeling rich.

I don't drink 4-5 cups a day, but I don't avoid it like I used to either. I don't think I've seen a correlation between "heavy" caffine days and heavier lupus symptoms.

SoleSinger
08-11-2006, 06:04 AM
I haven't been to the Caribou coffee out here yet... But they are owned by Starbucks... What is the difference?

I don't "need" caffeine... It really has no effect on me... I rarely use the coffee maker at home... But, I LOVE frappuccinos and other cold slushy coffee drinks! Just because they TASTE so good!! But, if they were decaf I don't think I'd even notice.

Beauchick
08-11-2006, 07:14 AM
I'm a 4 shot medium mocha!!!!! Love it. My coffee shop starts making it as soon as they see my car pull up. I have never noticed a difference in the way my body feels with or without it. I swear there is a concentration difference though. That might just be in my head because I only get it when I'm off to work or to do errans so I asscoiate the two together. I do have a soda addiction. And I could not be a true southerner without my sweetened iced tea with lemon. I could go without eating before I could go without drinking something. I drink socially also but have a full bar at home. I really don't drink anything at home though. I have noticed that if my muscle spasms get bad, if I take 1 shot of something, they subside. I don't do that often. My husband and I are advid pool players. We have not been out in a long time but I did notice that I drank more in those settings. I also smoke more in those settings...YES I'M A SMOKER. Let the hate mail begin. :evil: lol

jaynedarcy
08-11-2006, 07:40 AM
No hatemail here, Beauchick. I don't like cigarettes, or the smoke, but everyones lifestyle choices are theres to make. And one thing I've learned about with Lupus is that some of the oddest things make one feel better.

buddhabelly
08-13-2006, 02:16 PM
This post isn't hate mail about smoking... just something that I learned from an article I was reading... Just something to keep in mind...

Smoking is known to cause flares. :( It may be due to the carbon monoxide and nicotine damaging cell walls allowing the release of inflammatory substances that can trigger these flares. Smoking reduces blood flow to the skin, it may interfere with the body's natural ability to heal lesions (for those who have cutaneous and/or systemic lupus). Also, smoking blocks the action of antimalarial drugs, hindering their metabolism in the liver.