Methotrexate and alcohol

Paleogirl · 19. Sep 2016, 15:21

Hi, I'm sure this has been asked a million times. But the leaflet I have says you can't drink on methotrexate. Given I've got a lifetime of this, is that right

dreamdaisy · 20. Sep 2016, 03:45

When I began the meth I was dry for three months in order to establish that my liver was coping OK. It did. The thinking now is that a moderate amount of alcohol is OK but it is essential to ensure that you do your bloods on a regular basis to check that all is OK. DD

trepolpen · 20. Sep 2016, 04:53

hi Paleogirl ,

you are starting on a high dose of MTX and can cause raised Liver results ( ALT ) & would take DD advice & talk to the consultant/nurses about any drinks after that

I was told a occasional drinker like a pint a week but if you are having problems it will show up in your blood test , but when first starting on MTX its best to stay clear of drinking until it settles , raising folic acid to six days a week would help if you have problems but your consultant would have to agree to it

hope it goes well

Paleogirl · 20. Sep 2016, 10:06

I've had a letter through this morning with the details of the drugs on. They appear to be giving the highest dose per weight ratio they can which is a bit worrying.

They have requested blood tests every two weeks dropping to every month once I have stabilised on the drugs for 8 weeks.

I took the first dose of the Methatrexate last night, feeling nauseous now about 16 hours later. It still feels a bit like never mind you will need a liver transplant in a year at least the RA is under control

They seem to have gone in with all guns blazing, maximum doses of everything. They want to introduce a third drug next month. I feel like I'm trying to hold on to a lamp post in a hurricane, going hang on are you really sure this is necessary. Last week you were all telling me I was a neurotic, hyperchondriac with a few aches and pains

daffy2 · 20. Sep 2016, 12:33

Well, it's well known that doctors are severely allergic to admitting they've got it wrong so I think you'll just have to accept the current volte face as that admittance!
I would assume that the current strategy is to hit the disease hard to arrest progress as quickly as possible, hence the high doses. There are RA old hands on here who will be able to give more information on that side of things, including how to cope with side effects. Also, do remember the Helpline if you are struggling - they are very good at listening and reassuring.

stickywicket · 21. Sep 2016, 03:58

Well done on taking the meth! Yes, it was difficult but you did it

The modern way is often to clobber diseases as hard as possible as quickly as possible. This will be especially true for you if it's felt you've been harbouring the disease for some time. I do hope it has the desired effect though most DMARDS take up to 12 weeks to kick in properly.

You will NOT need a liver transplant. I've never heard of anyone taking these meds who did. Have your regular blood tests and any potential changes will be noticed long before you've felt anything untoward at all. I've been taking meth for about 16 years and, since I got properly established on it, I almost always have a glass of wine with my evening meal, two if friends are with us and a now-rare but wonderful glass of whisky when visiting our son in Scotland. I keep my meth day alcohol-free and aim for another alcohol-free day each week. My ALT levels are always beautifully low.

dreamdaisy · 21. Sep 2016, 06:21

Firstly, congratulations on taking your first dose, that is an important hurdle overcome - think of it in terms of fighting back, showing the disease that you are not going to be trampled like a doormat. Of the two I have I prefer the OA because that is more honest in how it presents and in what it does whereas my PsA is very sneaky - I think that's true of all the auto-immune conditions.

The dosage of some meds is weight-based, that's quite usual. It's also usual to take more than one medication, they play different roles and and complement each other in treating various aspects of the condition. The meth is damping down your immune system to reduce disease activity and the hydroxy will ease the swelling (and hopefully the pain too). If your joints are hot to the touch then icing them is a useful short-term treatment to reduce the inflammation etc. I used small bags of frozen peas (wrapped in a teatowel) because they moulded well to the shape of my knees (I also clearly labelled them so they wouldn't be eaten). I haven't had to do that for years now thanks to the meds. DD

Paleogirl · 21. Sep 2016, 13:29

It seems I have had a rare allergic reaction to the steroid injection they gave me which instead of damping down the symptoms has caused it to flare significantly. I must admit now I would probably take anything they gave me as I'm in so much pain

frogmorton · 21. Sep 2016, 14:39

Good evening Paleogirl,

I am glad you have found out that it was the steroid injection causing that reaction at least 'they' now know too.

Steroid injections are a 'never again' for you I think, but in the meantime can they help you with the reaction?

I hope you are also feeling less queasy after your MTX the other night?

Love

Toni xxx

Paleogirl · 21. Sep 2016, 15:11

Hi Toni

Nothing they can do but give me pain killers. I'm more worried with the other drugs about the hair loss. I shouldn't have looked on a support group forum, people saying they'd had massive hair loss or nearly died from infections

stickywicket · 21. Sep 2016, 17:34

First rule of arthritis - Thou shalt not google.

Second rule of arthritis - Thou shalt not believe all the anecdotal stuff on forums.

Third rule of arthritis - Most people who are doing well on the meds haven't time to post about it on the net.

Believe the good news, Paleogirl. Don't look for the bad.

trepolpen · 22. Sep 2016, 03:24

stickywicket wrote:

First rule of arthritis - Thou shalt not google.

Second rule of arthritis - Thou shalt not believe all the anecdotal stuff on forums.

Third rule of arthritis - Most people who are doing well on the meds haven't time to post about it on the net.

Believe the good news, Paleogirl. Don't look for the bad.

Sticky is so right , even on here be careful the advice you take , build a relations with your rheumatology team , hope the Methotrexate goes well but they are starting you on a high dose & may take time to settle but there are other drugs if that one does not work , dont take st john's wort with methotrexate because they interact & affects your liver

btw you wont get liver damage on Methotrexate because it will show up on your blood test & they would stop it before any damage is done , and a good reason to stay clear of alcohol when starting the drug

Melanie17 · 27. Sep 2016, 15:42

It is really correct that the blood tests will show raised ALT levels if the liver is affected.This is why we MUST have blood tests regularly on Methotrexate.I took Methotrexate for a while,but had a couple of blood tests that showed unacceptably raised ALT levels.The Meth was discontinued permanently.A short time after I stopped taking it my ALT levels returned to normal so as long as you have regular blood tests,please be reassured that this drug will be stopped if it affects your liver adversely.Most advice on drinking alcohol seems to suggest it would normally be O.K in small quantities.

Paleogirl · 27. Sep 2016, 16:56

Thanks.

Bumped in to my old line manager today, his wife was put on methotrexate for RA and ended up with life threatening complications and permanent damage, a friend of theirs ended up with nodules on her lungs.

It really does seem like Russian roulette this drug.

trepolpen · 28. Sep 2016, 04:09

Paleogirl wrote:

Thanks.

Bumped in to my old line manager today, his wife was put on methotrexate for RA and ended up with life threatening complications and permanent damage, a friend of theirs ended up with nodules on her lungs.

It really does seem like Russian roulette this drug.

RA can attack pretty much any part of the body , including heart , lungs , common is eyes & it dont mean its anything to do with methotrexate

as for nodules on her lungs , its one thing RA can cause & nothing to do with methotrexate , if you are ever worried talk to your consultant/nurse or even pharmacist , there are other drugs instead of Methotrexate like Leflunomide & Sulfasalazine but what you dont want is long term join damage which will happen without it being controlled

stickywicket · 28. Sep 2016, 06:09

Trepolpen is absolutely right. RA can cause nodules internally as well as externally and, untreated, is much more likely to do so.

I understand your fear but I'm reminded, once again, of the old Cherokee Wisdom quote:

"One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two "wolves" inside us all. One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego. The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."

The grandson thought about it for a minute and then asked his grandfather:
"Which wolf wins?"

The old Cherokee simply replied, "The one you feed."

If you feed the fear it will grow. If you feed the hope that will grow. Only you can choose.

pot80 · 28. Sep 2016, 12:44

I was put on 10 units alc/wk. As a guide a 125ml (small) glass of a wine at 12% alc gives a unit and a half ie I can drink 6 small glasses
per wk. We aim not to buy any wine over 12% as the units soon mount up.

dreamdaisy · 29. Sep 2016, 03:53

In my experience of life so far, I found that living with fear and negativity was both emotionally and physically draining thuis making everything worse. what's the point in doing that to myself? Living with positivity and relaxation, however, is both emotionally and physically empowering and I can cope far better with life's hiccups and obstacles. In A A Milne terms some people are natural Eeyores, others Tiggers, Kangas, Rabbits, Piglets and Poohs or mixtures thereof. I tend towards the Tigger and Pooh side of things because life's more fun. Yes, I get the odd bout of being an Eeyore but old habits soon resume.

I've never googled anything about my condition because other people's experiences are not mine, I don't know their medical history or any other conditions they may have that could affect how they react to medications. I've heard vague rumours that the internet is not 100% reliable with any information so that's something to bear in mind. I talk things over with my rheumatologist when I see her or contact my unit's Helpline if something untoward happens because they know me and my history. I chat to my GP too, and I chat to people on here who really understand what's what when Living with Arthritis. DD

Paleogirl · 29. Sep 2016, 04:26

I think what has made me doubt is not the Internet, because I take a judgement on that and I started the methotrexate. Though the nurse has taken me off it until the consultant is back off holiday and can review.

It's talking to my colleague with RA who had a dreadful experience, it's the work colleague (doctor) who says not that drug, my sister in law died of complications from taking it for RA. It's my line manager who says, my wife was on that it left her with permanent health problems worse than the RA.

It's the positive stories section someone sent me on here but which was oh once I got over the nasty abcess and the six weeks off work it was okay......and I'm just thinking.....they handed it to me like smarties in a half hour. It does literally feel like Russian roulette and I want to know whether it is the best or indeed the only treatment or just the cheapest

Paleogirl · 29. Sep 2016, 04:28

Particularly as the side effects of the steroid injection have been so horrific, my trust is at a bit of a low.

Methotrexate and alcohol

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