MTX and Alcohol- the continuing saga

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wearyRAsufferer
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Date Joined Mar 2010
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   Posted 8/26/2010 10:36 AM (GMT -7)   
nono  
 
That's my doctor up above- LOL!
 
I picked up my MTX refill last night. I looked at the bottle and as usual there were sticky labels all over it warning me that it may make me dizzy, stay out of direct sunlight, etc... No label saying Do not drink alcohol while taking this medicine. Now we've all seen that one on prescriptions such as antibiotics, anti anxiety meds, etc...
So when they ask if I have any questions I say yes actually I do.
Why does everything I read on line and why does my doctor say you should have absolutely no alcohol  if you take MTX except maybe on a special ocassion? He starts telling me that MTX is very hard on the GI system as is alcohol. Surely you mean the liver correct I ask? Well it is hard on the liver too he says. Yes but if it is so hard on the liver that my doctor tells me not to drink and anything I read on line about the mix tells me not to drink- why is there no label on my bottle? If it is that important shouldn't there be a label? He says the drug companies tell them which labels to use. He said I should listen to my doctor however.  He said he does not want to be the one to tell me it is OK to drink in moderation- that is the doctor's call. Plus I said- what is moderation? That is subjective.
 
So.....I still don't know what is safe.  confused

morning joy
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Date Joined Aug 2010
Total Posts : 23
   Posted 8/26/2010 5:06 PM (GMT -7)   
I think that drinking causes more problems thatn is solves. I take a lot of meds and all of them say no alkahol. Ask you drugest. I would go with what the doc says. That is just what I think. I am taking MTX, as well and my doc said no drinking but you do what you think you need to do

golitho
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Date Joined Sep 2008
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   Posted 8/26/2010 6:27 PM (GMT -7)   
Weary, if you need to drink just make sure you drink heaps of water too , that way your liver will cope. My rheumy said 2 drinks a week to me. Not none ever. I find I drink more some weeks and nothing others dependng on whats on. But some alcohol, champagne especially always makes me feel worse the next day. Whether its the acid or something I don't know.
We have to live, we can't be pure all the time, I try to look after my body, eat good food, lots of fruit and vegies but if I want a drink with friends I don't deny myself a treat. I just drink water afterwards.

How much are you drinking? Is it everyday? How are your liver screenings? Just be sensible, golitho

wearyRAsufferer
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   Posted 8/27/2010 6:38 AM (GMT -7)   
golitho- I haven't had a drink since my last RD appt. back in mid July.
However when summer started and the "social season" by the pool, BBQ's etc. I had found myself on the weekends having a glass of wine or 2 with dinner (both days) and a martini or 2 as well. I do always drink a lot of water.
Anyway- what I have said may sound excessive to some but in my circle it's not. I knew in my heart that I should tell my doctor so I did and he flipped out.
I could be well satisfied having just 1 glass of wine and 1 martini both days but I think even that is too excessive on MTX- but I really don't know for sure.

ZenaWP
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   Posted 8/27/2010 7:02 AM (GMT -7)   
My rheumy said no alcohol, as did the pamphlets from the Arthritis Foundation that she gave me.  I guess you have to decide if your health or having an extra drink or two is more important.  If you can't have a good time without a few drinks, then you either take the risk of ruining your liver or you should stop taking mtx and deal with the pain/find another treatment.  We all have guilty pleasures but
there are different levels of danger involved and this one seems pretty risky.  Yes, different doctors may have different opinions on the subject, but there is no way to know how much danger there really is and you have to decide if it's worth it to you to take the risk.  I personally would LOVE to be able to take mtx again and would stop doing a lot of things in order to take it...I'd even give up dark chocolate forever.  =)  My liver enzymes raised too high just on the mtx alone and I never had a drop of alcohol...so, there is potential for danger there, but it will depend on the person. 

wearyRAsufferer
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Date Joined Mar 2010
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   Posted 8/27/2010 7:31 AM (GMT -7)   
It does sound pretty risky- but I don't know how well it's researched.
ALL RA medicines say they are hard on the liver- why is it that only MTX has the no alcohol warning?
Could it be because MTX is used in higher doses for cancer patients?
It always sounds as if it's been assumed but not concrete. Has there been any studies done?
MTX has been used with RA for over 25 years. I find it very hard to believe that everyone that has had to use it abstained from alcohol.

BTW- this post is for discussion purposes about is it or isn't it TRULY dangerous- I don't want to be judged. The doctor has done a good enough job about making me feel bad about myself for wanting to do what millions of other people do in social situations.

ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 8/27/2010 8:22 AM (GMT -7)   

I'm not trying to judge anyone, but I'm just saying that there is no way to know for sure how dangerous it is and, like all medicines, it's going to react differently for each person.  I'm one who couldn't take it alone because of my liver...I can't even imagine what alcohol added in to the mix would have done.  You would maybe be fine drinking on it.  Mine had the label on it saying not to drink alcohol, so I'm not sure why yours doesn't.  Maybe it's up to the pharmacy and the insurance company, maybe it's up to the manufacturer, I don't know.  But, you could ask a million different people whether it's safe, you could even ask a million different doctors whether it's safe, and you are going to get a lot of different answers.  I would trust my doctor over what people on this or any forum say, as the people here don't have medical degrees and don't do this for a living.

Again, I'm not trying to judge you at all, but it sounds to me like you are trying to get some justification...you are trying to get someone to say that it's okay for you to do it because everyone else is allowed to do it.  Unfortunately, life is not fair.  It's not fair that you have RA and it's not fair that you can't do the same things everyone else without RA can do.  The sooner I accepted that I can NOT do what everyone else does most of the time, the sooner I got over the bad feelings and was able to move on with my life and try to make the most of it.  Harboring these feelings of resentment and trying to figure out questions that don't have concrete answers is only going to cause you more stress and make your illness worse.     


MELttdown
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Date Joined Aug 2010
Total Posts : 49
   Posted 8/28/2010 1:53 AM (GMT -7)   
Well, as I've said in a previous post, my rheumy made it perfectly clear to me (due to my immediate shocked reaction when he said the words "no alcohol") that I'm only NOT allowed to drink on the day I take the MTX. He said it was fine on any other day of the week.

It wasn't until I did my own internet research that I discovered that most people are told "no alcohol at all" (or very limited, etc). He's the expert. So I'm sticking with what HE says! tongue

wearyRAsufferer
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Date Joined Mar 2010
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   Posted 8/28/2010 5:02 AM (GMT -7)   
LOL Mel!

My doctor is an old man. He has told me he never had a drink til he was 30 years old and didn't like it and doesn't drink at all. He seems totally against alcohol MTX or no MTX. Maybe he grew up with alcoholic parents or some other kind of negative experience. He says (MTX aside) your liver suffers any time you have a drink. He's an RD not a liver specialist. I think he has a prejudice against alcohol. I don't look to him as "GOD" What makes his word THE word when there are millions of others making millions of recommendations?

That said- I'm not looking for one person to tell me it's OK or they heard it's OK so I give myself a green light.
I want to hear about as many people as I can, do as much research as I can and make a consensus for myself to determine what is relatively safe. So far it's in favor of none to 2 drinks per week. It is also true what is safe for one may not be for another. Given the fact I have never had any problems, my blood work for liver has always been in the low normal range- I think it tolerates things well. I have also heard that all of a sudden things can change. I could walk off the curb today and be hit by a car and be killed- who the heck knows.

But Zena is right too. I have not accepted my RA and I have built up resentment and I'm harming myself. I just cannot bring myself to accept what RA has robbed from me. Some things here or there I have- but not all. It's almost three years for me and the cycle of grief keeps going over and over again.

morning joy
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/28/2010 10:18 AM (GMT -7)   
Hi wearyRAsufferer I am sorry if you feel like we are judging you. We are not. Because MTX is hard on the liver it makes sense that you would not want to add to the stress on it. As for drinking because everyone else,is poo on that one. I don't drink because I don't want to. As for not accepting your RA I realize it is hard to accept cronic illness but it is better to deal with it. That is just what I think about the situation. You will be in my thoughts. Also, I had a seek counciling when I started getting sick and it has helped. Take care and best of luck to you.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/30/2010 11:21 AM (GMT -7)   
ahhhh Weary, You simply need to move to the UK, where alcohol and MTX aren't a dangerous combination. Plus, by the sounds of it, you'd enjoy our attitude/culture regarding Alcohol ;) (though no pool parties I'm afraid, and BBQs are usually wet.)

I have cut my MTX down from 25mg injected to 7.5mg oral (tablet). I just got bored of stressing about blood levels, and having to think about drinking. (And doctors dismissing fibromyalgia symptoms as being due to RA). Problem solved in one deft swoop - stop taking MTX. After a month or two of a maintenance dose of 7.5, I'll drop to 5 for a while, and then cease completely.

I basically stopped moderating my alcohol intake about 5 months ago on MTX, when I got frustrated with sobriety! My bloods have stayed fine, and my liver is working like a champ - but of course, everyone is different, and what is OK for me may not be for others...Blah blah.

Can you try another DMARD like leflunomide, on which you can drink with nothing but judgmental republicans to hold you back.... (I don't know how to spell leflunomide, but I think it's right)?

The disease still wins if treating it prevents you from doing what you want to do.... tc
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

morning joy
Regular Member


Date Joined Aug 2010
Total Posts : 23
   Posted 8/30/2010 11:40 AM (GMT -7)   
Just a minute guys,
I go to BBQS and pool parties where others are drinking even though I don't. I have just a good of time. Whoever said one has to drink. Another point I would like to make if you are taking meds to help the symptums of RA and you want them to help and you know the meds are hard on your liver and everything else why would you want to drink and make things worse. I don't understand. Also, I am not makeing excuses or appoligizing for the way I feel.

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/30/2010 12:26 PM (GMT -7)   
Morning Joy, some people enjoy alcohol, and feel as though not being able to drink is just too much to take, on top of everything else that RA (et al) takes away from you. Before DX, I climbed mountains, worked out daily, worked in the security industry, played guitar for hours on end... now, the last trek I did was in 2008, I've had to quit my security job, and can't play guitar for very often. Oh, and i can't even drink!

You cannot judge people for decisions regarding their health, everything you do has a risk and a reward, and the one that wins out will be different based on your perspective - but as long as the decision is educated, it cannot be the "wrong" one.

Oh, and i contest that it is possible to hold a BBQ without alcohol. My australian brethren will no doubt stand to arms here and defend the sanctity of the barbecue.
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/30/2010 2:22 PM (GMT -7)   
I suppose I should point out that I'm joking in the above post. Except for the barbecue point. Don't ever suggest a dry barby again.

xxx

James
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (a) googlemail.com (Anti-spam)

wearyRAsufferer
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Date Joined Mar 2010
Total Posts : 2329
   Posted 8/30/2010 3:16 PM (GMT -7)   
There you are James! I thought you must have left town!
I don't think ill of people who have no interest in drinking- to each his own- but some who don't drink can't fathom how those of us who do miss it when they are told they cannot due to MTX. it may sound simple to them- you know it could do your liver harm so just don't do it.
Maybe they should imagine something that is a favorite of theirs and think how it would feel to be cut off completely from being able to do it. No choice in the matter what so ever. I didn't ask anyone how they felt about drinking. I am trying to poll so to speak- those of us who do and see what their doctor recommends and what they do and what their experience has been with it.
I certainly do not mean to ruffle anyone feathers- but I do think I explained myself upfront.
James- I have thought about another DMARD but I just don't understand why you can drink on all of those when they clearly warn that they are hard on the liver too! No one seems to have an answer about why it is only MTX that carries the no alcohol warning. Last week I cut my dose down to 6 2.5 mgs from 8. Crap- I've been paying for it. Not sure what to do this week. I have heard when you go off MTX it can cause a major flare that you never fully come back from. I know when I had to stop it for 3 weeks once for an infection that I did have a flare (not like the first but pretty bad). i had to go on 10 mgs of prednisone to calm things down for a few months and then I had to go up to the max dose of MTX because I didn't have the same comfort level anymore. Actually even on the max dose-I didn't get there. So it's scary for me to go off. That's why I thought maybe I can taper down and then go on a new drug. I have an RD appt. in 2 weeks and it will be better discussed with him but he is judgmental and I don't appreciate it. Instead of making me feel bad that I want to have drinks he should suggest an alternate plan. I am upset that I can't be honest and upfront about this to him. I mean I'm not a drunk who lies in the gutter with a bottle of wine in my hand for goodness sakes! I just want to have a few drinks on the weekend with my husband and friends like I've done all my life!

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/30/2010 4:38 PM (GMT -7)   
hey weary!

What you say about other DMARDS being equally hard on your liver - you do have a very valid point. I'm not sure about the specifics of it, but there is a rare but real possibility (with MTX) that there will be be a specific reaction resulting in liver failure. From what I've been told, the risk is nearly negligible, but such a serious consequence if it does happen - that extreme preventative measures need to be taken. With drugs like Leflunomide - although hard on the liver, it lacks the specific toxic contraindication with alcohol which MTX has.... this is largely speculation and vague recall of facts - sorry I can't be more helpful - I'm tired!

However, despite the MTX/Alcohol claims - there's no mad rush of diseased livers in Rheumatology clinics across England, despite the official warning is that you should stay under 19-24 units per week (dependent on sex/size) (1 unit is one 25ml shot of 40% spirit, so 10 beers or so a week, or 20 whiskys - fairly generous, but still less than the average British persons intake). America seems to have a highly prohibitionist culture which has permeated into the medical world!

I am on MTX, and when my rheumy prescribed me Amitriptyline, I asked if I could drink. He actively encouraged it, to potentiate the drug - and didn't mention that I shouldn't as I'm on MTX. I even told him I was going to drink a lot the next weekend due to being at a music festival.... (he said "By all means, drink! It'll make it work more effectively! But if you do, make sure you're within 10ft of a bed, as you may pass out") - I should point out that Amitriptyline has a label that says "AVOID ALCOHOL" on the box, yet I was told it was fine!!

Hope you can find the solution that suits you, I don't want to suggest you follow one solution or another as I'm sure your smart enough to figure out which one suits you best :)

take care

Edit: Cleaned up grammar issues caused by Amitriptyline & Hydroxyzine drowsiness!

Post Edited (JayBespoke) : 8/31/2010 4:05:14 AM (GMT-6)


MELttdown
Regular Member


Date Joined Aug 2010
Total Posts : 49
   Posted 8/31/2010 2:45 AM (GMT -7)   
Well, well. James strolls back into town and sanity prevails. :-)

Had to have a little chuckle about the bbq point. It is indeed unheard of to light a bbq in this neck of the woods without a coldie in hand! shocked

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 8/31/2010 3:08 AM (GMT -7)   
hehehe, hello!

I have explained my temporary departure in the other thread, Re doctors appointment!

I'm feeling rather guilty today, I had a BBQ on Thursday, Friday, Saturday, and Sunday. At 11am. With plenty of beer and bourbon. My liver is sulking, but otherwise OK!
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)

Feel free to contact me for any reason, unless you're in sales!

Bstrong
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Date Joined Jul 2010
Total Posts : 107
   Posted 9/1/2010 5:05 AM (GMT -7)   
Hi guys I was trying to not reply to this thread, but well... everybody can have their own opinion, right? :) . I don't think it is smart - alcohol + medications whatever medication it is, and well JayBespoke at the end of the rode it is your health and you can do whatever with that. We all have the choice, we are all adults, we know what we are doing. I have chosen a little bit different way as I don't care about alcohol to much and healthy food is very important to me.

I just wish you good luck with the way of treating yourself and of course don't get offened in any way - just my opinion.
Polyarthritis - diagnosed July 2010, suffering from May 2009

Prednisone - 10mg/day, Plaquenil, Vitamin D, Fish Oil, Isoniazid - getting me ready for Humira, also Prednisone shots ocasionally.

Pain - off and on

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/1/2010 7:19 AM (GMT -7)   
Wait I'm confused.... why would I be offended because you don't drink? Is alcohol this much of a contentious issue in America??
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: facebook.com/ jabutler // burnley219 (at) googlemail.com (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/1/2010 9:33 AM (GMT -7)   
James, I think Bstrong didn't want to offend anyone by saying that alcohol + meds are not smart.  And I agree with Bstrong that we are all adults.  So, let's not turn this post into a rant about Americans or "judgmental republications," as that has nothing to do with this topic except maybe for the fact that you might not get the warning label on your mtx unless you are in America.  Weary is correct that it's harder for people who don't drink to see how hard it is to give that up when you may not really need to.  I don't usually drink, but I can tell you that I would give up any food or drink that I love if MY doctors warned me that I should stop.  But, I also have Crohn's disease and have completely given up several things that I loved because the doctor told me not to eat/drink it, so maybe it's easier for me than for some people.  We all have different levels of self control and it's harder for some to give up some things than for other people to.  And, I'm sure it would be more difficult to give up alcohol, which is normally found in a social setting, than something that isn't found in a social setting where there are others there to influence you.  Weary, all I can recommend is that, if you feel your doctor is judging you and you can't be honest with him, is to find a new doctor.  Maybe a new doctor will have a different opinion on having a couple drinks a week.  I've had 3 doctors for my Crohn's disease over the last 13 yrs and still aren't sure I've found the best fit...sometimes it takes a while.  And they've all had some very different opinions on things.  My rheumy, on the other hand, is great (but she's one that said no alcohol).  Try getting a second opinion somewhere else and ask that doctor what he/she recommends.  Or, go to the education events that the AF, etc. holds and talk to the drs there after they present.   

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/1/2010 9:53 AM (GMT -7)   
Sorry, I also should have added that it's probably much harder to give stuff up the older you are when you get dx'ed.  I wasn't at drinking age yet when I started having major health problems, so I never got started on drinking.  I'm sure it's much harder to give stuff up when you've been doing it for many years.  Even the foods/drinks I did have to give up, I'd only been enjoying for several years, not 20-30 or more (not sure how old any of you are).  So, it will be much easier for some than for others and there is no point in arguing about it.  This post is starting to get very argumentative and I'm amazed the moderators haven't said something...I've seen people get stopped for much less on the Crohn's forum.   

Chartreux
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Date Joined Aug 2006
Total Posts : 9622
   Posted 9/1/2010 1:27 PM (GMT -7)   
Where's the argument?
seems like a open discussion (sp?/sorry)...Everyone is entitled to a opinion...
Granted the USA is stricter on this issue........
Hope everyone has a low pain week....
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/1/2010 2:42 PM (GMT -7)   
Chartreux said...
Where's the argument?
seems like a open discussion (sp?/sorry)...Everyone is entitled to a opinion...
Granted the USA is stricter on this issue........


smurf smurf

I couldn't have put it better!

JayBespoke
Regular Member


Date Joined Jul 2010
Total Posts : 297
   Posted 9/1/2010 2:47 PM (GMT -7)   
ZenaWP said...
So, let's not turn this post into a rant about Americans or "judgmental republications," as that has nothing to do with this topic except maybe for the fact that you might not get the warning label on your mtx unless you are in America.


I think the differences in regulation accross the pond is actually very relevent to this discussion, if major governmental bodies have not reached a concus, then this has to play a significant role in determining the risks, as our friend Weary is on a mission to do!!

hehe, ranting, I think you misinterpret me, I'm extremely jealous, actually - Britain's healthcare system is a continuous struggle against logic and reason.

take care x
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