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  #1  
Old Sun Aug 10, 2014, 01:17 AM
Heather8773 Heather8773 is offline
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Alcohol after transplant ?

So just wondering bc I've never seen it come up and my husband seems to be drinking beer more frequently lately ... How long until anyone has had alcohol after transplant? I'm not sure what I think about this
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #2  
Old Sun Aug 10, 2014, 01:22 AM
Cheryl C Cheryl C is offline
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Hi Heather - great that Ronald gave up smoking. Good on him. See my response to the previous thread on alcohol.
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  #3  
Old Sun Aug 24, 2014, 01:44 AM
Heather8773 Heather8773 is offline
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Ok so not to be weird and push this but I'm seriously wondering has anyone drank alcohol after transplant? Good, bad, moderation is key? Pls message me if you are uncomfortable posting here
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #4  
Old Sun Aug 24, 2014, 09:11 AM
sbk007 sbk007 is offline
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Heather, Don't know first hand but Ray, handle "RAR" posted that his Docs told him NOT to drink any alcohol for a year after transplant. Hopefully someone with first hand experience can answer you. Good to hear Ron is doing so well.
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  #5  
Old Sun Aug 24, 2014, 02:51 PM
curlygirl curlygirl is offline
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I would guess that most of the medicines that you take after a BMT (e.g., cyclosporine) aren't good to take with alcohol, but I have to say that alcohol consumption is a very relative/personal thing at the best of times. For example, I graduated from a large state university with a famous football team almost 20 years ago. I have two couple friends that met and married there. Their favorite "date nights" if they can get a baby sitter is go to out to a pub and watch a game and have several beers and feel young again. Other people I know would think that is bizarre and call it binge drinking. I even read an article once where alcohol was listed as one of the top 5 reasons that couples fight, in that it wasn't the absolute quantity that they fought about but what each found acceptable. If both found that having a glass or two of wine every night was fine they got along great; if both thought that abstaining was fine they got along great; but if one thought that three beers during a game was too many and the other too few they were probably going to fight about that their entire union. I don't think telling your husband that people on your message board think drinking alcohol is a bad idea will help, he probably already knows that it is. He should talk to his doctor about it (who I'm sure won't be thrilled about it) but if he's going to drink moderation is obviously key. One thing that I've noticed about friends that get into habits (not addictions but habits) with things like smoking and drinking is that they tend to do it when they're bored. When they quit it was because they actively went out and did something to try to fill their time, for example they'd go out and play tennis or take a walk when they felt like smoking. The problem after a BMT is that there isn't much you can do - for one thing you're not allowed out to do much, and for another you don't feel well enough to do it. My guess is that your husband is bored and trying to fill his time. Maybe a distraction, even something like playing video games, will help.
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  #6  
Old Sun Aug 24, 2014, 08:37 PM
Chirley Chirley is offline
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I will be frank and honest. My brother drinks too much. I discussed this with my Physician who is aware that my brother has Lupus. My Physician says it's a form of self medication that makes him feel better because alcohol suppresses the immune system so while he isn't aware that he is treating his disease, he is actually medicating himself. The down side is my brother drinks too much by societies standards. He still works, is never inappropriate, has never been "drunk", has never driven under the influence, does volunteer work, is a valued member of society AND most importantly does not have to take immunosuppressants for his Lupus which used to test at extremely high levels.

I'm not advocating alcohol for immune mediated diseases, I'm just saying just as there is a place for medical marihuana there may also be a medical use for alcohol. It appears so in my brothers case, at least.
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  #7  
Old Sun Aug 24, 2014, 09:17 PM
sbk007 sbk007 is offline
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I think Heather is looking for someone that had a couple beers or consumed alcohol after transplant. Forget about the moral issues. If you look at the actuarial tables(healthy individuals) you'll find 2 drinks a day will increase your lifespan by 3 years. Forget about addiction or how much is too much but is there any one on this forum that had a BMT and drank alcohol after it?. I guess alcohol combined with any medication can have an undesired effect so drug interactions with alcohol might be a concern. Seeing that he's 10 months out and doing well its probably not an issue for him.
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  #8  
Old Sun Aug 24, 2014, 09:31 PM
Chirley Chirley is offline
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That was the point I was trying to make...thank you. His doctor is in the best position to make that call. Sometimes it's a case of risks versus benefits.
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  #9  
Old Sun Aug 24, 2014, 09:42 PM
Heather8773 Heather8773 is offline
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Sbk007 you hit the nail on the head thank you yes there was a period of time after transplant he didn't drink at all. Your exactly right that I was wondering if anyone had and when. thank you

Curlygirl thank you that was a very good point. I think I may have miss represented how much. He drinks a couple beers after work. I know his prograf is already likely to raise liver enzymes. I was really just more curious on what everyones thoughts/ experience was and then I noticed there has been a lot of views on this topic so I figured other people may have been wondering as well. So I thank you for your valid points!

Chirley I applaud your honesty!!! I think all of our honesty helps all of us not be afraid to talk about real life situations we are facing. It's actually a really interesting point you bring up. My husband used to drink beer before his diagnosis of either disease and it seemed like there was a chance he was also self medicating. PNH has a high risk of producing blood clots (that is a cause of fatality in some PNH pts) and his beer drinking in a way may have helped prevent that. Not sure which part of the immune system beer suppresses but I know both of his diseases required immune suppressing drugs before transplant.

Thank y'all all for your thoughts and experiences! I think it makes us stronger as a group to talk about these things.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #10  
Old Mon Aug 25, 2014, 06:28 AM
SLB SLB is offline
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Hi Heather,

I am almost 18 months out from my BMT and At most I might have a couple of drinks maybe once or twice a week. I was never a big drinker and can easily go weeks without having a drink then have a few in a social situation. I can't remember when exactly but sometime during the 6-12 month mark I asked the registrar whether I could have a drink and she said a couple was fine.. I then asked my head doctor who was surprised she said yes cause she was usually very conservative about such things but he also was happy for me to have a few. Though I was never told that I couldn't drink even early days. However I have found that in Australia we seem to be more relaxed about stuff.

I go to the doc on fri, so if I remember I will ask again but he has never asked how much I drink etc so I haven't ever really worried about it until reading this
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  #11  
Old Mon Aug 25, 2014, 07:44 PM
Chirley Chirley is offline
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I don't know what US beer is like (a bit like ours by all accounts) but Oz beer is known to be pretty potent stuff which is why a lot of us drink the reduced alcohol versions. I apologise to the English in advance but I hear it's the worlds worst!
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  #12  
Old Tue Aug 26, 2014, 08:42 PM
donna j. donna j. is offline
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alcohol post transplant

31 mos post transplant i will have a beer about every 2 weeks. Red wine which i love can give an upset stomach and vodka only 1once or twice a year. My transplant dr said only 1 beer or wine on special occasions during my first couple of years. But now my now dr seems more concerned that i should lighten up and enjoy socializing more. When my husband and i go out for a boat ride and he has beer chilling in the cooler, i find asking for a sip and taking a swig does the trick. I may go on to say we were recently in Colorado, land of legal pot and i ate part of a "brownie" with my tea. So many restrictions placed on a person post transplant (with gvhd) one has to loosen up some or will "crack the vessel".
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