Alochol

[Happy Camper]

Ok so tommorow is my best friends birthday. We are suppose to go see our favorite band play. I am aloud to have a few drinks? I felt stupid asking the doctor-like I felt bad that I would want to let a little lose and have some fun-ha ha ha. I take Cytoxin/and pred./and Bactrum.
I'm excited to go and think/talk about something other then Wegener's. Feel a little normal. I love love to dance also, so I figure that will be some good exercise.

[Jack]

I've always had the odd drink or two and never noticed any undue effects. My Wegs docs all knew I liked the odd single malt and seemed to think it was good for me. :) As far as I'm aware, most of the concerns about drinking while taking Cytoxin are due to its affect on the liver.

I don't think that getting out of your head would be a very good idea! Or drinking on a regular basis.

[JanW]

I know that some docs advise absolutely no alcohol with mtx, but mine does not. I only have a couple of drinks per month though, because when I was first on my 'test' dosages my liver enzymes really spiked to the point that they thought I couldn't take it at all (the reality is that I don't think that my idea of moderate drinking and my rheumy's idea of moderate drinking is the same -- before WG I drank wine daily), and I had to go off of it for several weeks. Now, I try to play it super safe because this drug has worked well for me so far and I don't want to jeopardize that.

[Happy Camper]

Ok thanks for the info. I am not a big drinker in general. Usually about once a month I go out with my girlfriends and have a few drinks, and thats it. So I think it should be fine, just wouldn't want to make anything worse. I'll let you guys know how it goes LOL

[Carly Hedge]

My Rheuma when I was on the that mix told me no alcohol but I also have liver issues. She has allowed me 1 and ONLY 1 glass of wine or beer OCCASIONALLY.. NO hard stuff!! It's sux cause I am a Rum Baby!

[DEE]

Happy Camper
its funny that you should of added this thread as it was a question i forgot to as wg consult wed am
its my birthday soon and we are having a bq for friends and family and for the last two birthdays ive been to ill to drink ,so my friend said to ask as im still on cxt and preda
thinking may just have the one depending on how i feel on the day :) DEE x

[elephant]

This may sound funny but today I was pretty stuffy and my left ear felt full and like I was talking inside my head....I had a half a glass of wine and it was gone....so I had another...still gone..weird that wine took care of my ears/stuffiness???

[DEE]

hi elephant
maybe thats where we are going wrong , maybe wine and triple choc muffins can be our new treatment :) although taking a liking to bantoffee muffins !!
i was only asking because last time i had half glass of wine i slept for hours DEEx

[elephant]

Sounds good to me Dee, I might have another glass of wine if I am stuffy/ear fullness and see what happens....then a triple choc muffin!

[Happy Camper]

Just got home from my night. Best night I've had in a month. Had a few beers and danced for 3 hours straight. First time I felt normal in a month. Alright off to bed my kiddies will be up in about 3-4 hours and now that is going to be the hard part LOL!

[Sangye]

Elephant, I wonder if it happened because alcohol is a vasodilator. Maybe it temporarily improved the circulation there? I have to think it's something like that. I just can't believe Wegs is actually caused by alcohol deficiency. :D :D

[pberggren1]

New Wegs Study.

Drink like a fish to see if symptoms improve. Ha Ha!!!

[Doug]

I believe the Scots use the expression "to become legless", though, in our case, it always is better not to go farther than to lose a little toe!

My doctor let me have moderate amounts as soon as I hit remission, or maybe I just felt like I could handle it then, so asked. I think that's more like it.

[elephant]

Happycamper good for you, glad you had a blast! We all need to feel normal!
Sangye that makes sense..vasodilator...sounds like I should have one glass of red wine every night.

[woodsman1972]

That has been my biggest issue!! I love to have a few drinks with friends, but have been advised against it. I do partake in a glass of red wine each night on weekends. It is my "treat" to myself. I do miss the "happy hour", though. Once remission is declared, it's game on! Moderation is key.

[Happy Camper]

woodsman: r u taking cytoxan?

I have only hopefully one month left of cytoxan then I switch to Imuran.

I am going to a concert this weekend an plan on having a few drinks :) It's so nice to be able to go out have fun and forget about life with Wegener's

[woodsman1972]

Happy Camper: Just had my second monthly Cytoxan infusion, so alcohol is a no no for me right now. Of course there would be about a half dozen concerts coming to my town I want to see in the next couple of months. I just can't stand up for that long without it affecting my feet. Sucks when you like to let loose at a show. Have fun at the show. I'm going to see a concert next week. We're gonna get there early to get a "VIP table" where I can sit if need be. Who you going to see?

[Happy Camper]

Led Zeppelin 2 at the House of Blues in Chicago. Should be a good time. My lungs are been bothering me a little bit the last 2 weeks. They get all stiff at night, weird. Hope you have a good time too.

[elephant]

Happy camper do your lungs feel tight? I have the same symtoms but alot less right now. Did you have lung surgery?

[Happy Camper]

I had an open lung biospy on June 18th. I have many many pulmonary nodules (large) ones. My last ct scan showed that they are shrinking (down to about 1/2 the size) also showed some scarring/scar tissue. Yes my lungs feel tight/stiff. Esp. at night or when I sit or rest. The more active I am the better they seem to be. I was not feeling any of this till about 2 weeks ago. DIdn't know if it was becasue I'm going down on the steroids. I'm down to 30mg of pred. What about you, did you have surgery? Same syptoms? Its not terrible, but just annoying and makes me nervous that my lungs are not healing or the wegeners is acting up.

[elephant]

Happy Camper are you having any other symtoms besides the tight lungs? I had the video assisted thoracic surgery march 2009. It still is not perfect because of the scar tissue. I did feel like my lungs were tight and but it has gotten so much better. Every night when I go to bed and lay down on my left side ( chest) It feels tight like something is there. I had two CT scans and everything is fine so far. My thoracic surgeon says everyone is different and some people can have pain up to 6 months. Since we are on immunosuppresant medicines it takes longer for us to heal.....as you already know. So I just think the reason why I feel tight when I lay down is that my body did a "SLOP JOB!" of healing itself. :glare::rolleyes1:

[Happy Camper]

Well my pleural rub came back last week. I called Dr. Langford right away. I was so upset and mad. My dr. here could also hear some fine crackles in the bases of my lungs. Dr. Langford said to get a ctscan, so while waiting a day to get it the rub went away and I was feeling better. I called her and talked with her and she I could hold off for now and go get it if I get any worse. SHe said its either from scar tissue or I'm just noticing more now that I'm going down on the steroids. I'm down to 30mg right now. Or she said it could be from the wegeners acting up causing inflammation. All my blood work came back good this week and the rub is pretty much gone. I just have this tight/stiff feeling across the base of lungs that wraps around my sides esp. when taking a deep breath. Also if I sit long (like at night-b/c thats pretty much the only time I sit in a day) it's stiff feeling. I did notice that if I lay on my stomach my lungs feel much better??? My next follow up Ctscan is Oct. 10th I"m hoping to not get a scan until then, I get nervous about all that radiation. My kids also have the flu/cold/resp. virus whatever again- I can't believe this. We just can't catch a brake over here. I'm hoping not to catch it.

[Jack]

I think it is worth getting a scan if you have lung pain. After a little nagging from the forum I did that last year and it turned out to be a pulmonary embolism. Something us Wegies are prone to.