Alcohol and PMR: Hi everyone, I’m new here after... - PMRGCAuk

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Alcohol and PMR

Charliepeace
Charliepeace

Hi everyone, I’m new here after being diagnosed with PMR 2 months ago. Thanks for all the great advice and tips you share, it makes such a difference!

I read a post this morning about weight gain and liver function and I am really struggling with an increased appetite and massive weight gain (over a stone already). I am going to restrict carbs as suggested but am wondering what effect alcohol plays on the liver with PMR. I usually enjoy a bottle of wine with my husband over dinner but recently have been having an aperitif beforehand too so now worrying if this is causing damage to my liver. I do have some alcohol free days each week so wouldn’t want you all to think that I have a problem. I also don’t want to appear shallow on my first post but a drink or two is what is helping me through at the moment.

I am currently on 20mg of Pred after coming down from 30mg two weeks ago and am due to drop to 15mg at the end of the month.

Any advice would be most welcome

Thank you

58 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

There isn’t any medical reason why you shouldn’t drink on Pred - obviously in moderation- and many think it helps with your general well-being.

Must admit I did give it up early days when on very high doses for GCA, but that was my choice, never advised either way. When I did try it again, no issue.

Would say your taper is a bit quick...I’m guessing you are okay on 20mg, but just be aware it might be a bit more difficult from 20-15mg...and every 2 weeks is pushing it a bit!

So just be aware, that you are not reducing relentlessly to zero - you are trying to find the lowest dose to control your symptoms, so don’t try and go too quickly.

Thank you DorsetLady for your reply. I initially went on 15mg but it didn’t touch the pain so was increased to 30mg which helped straight away in September. They reduced me to 20 and then 4 weeks later (end of this month) I must reduce back to 15mg. I must admit that after reading the posts here, I am a bit nervous and am hoping that the pain doesn’t reappear like it was. I currently have no pain as such just stiffness and aches if I do too much walking which I am trying to do every day.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Charliepeace

You could try the reduction in 2 stages 20-17.5-15mg rather than one step down. And if you are feeling issues, then maybe don’t walk as far in one go - maybe 2 shorter walks rather than 1 longer one....you just have to experiment sometimes to find what’s best for you.

Thanks, great advice!

PMRpro
PMRproAmbassador

Not sure that the effect of alcohol is any different in PMR to anywhere else. But you do need to bear in mind that there are a lot of calories in those drinks. I do also get the "it's what gets me through at present", I'm in a similar situation so can't criticise anyone. But half a bottle of wine and an aperitif counts as binge drinking to the doctors!

Charliepeace
Charliepeace in reply to PMRpro

Hi, thanks for your reply and yes I agree with your comments. I’m going to try and reduce all my calorie intake to try and battle the steroid stone

PMRpro
PMRproAmbassador in reply to Charliepeace

I'm sorry to be a misery-guts but truth compels I fear.

Also buy smaller bottles.😊 1/2 a bottle most evenings would be too much according to anything I have read.

tangocharlie
tangocharlie in reply to PMRpro

That was my thought - wine is high carb - basically sugar - and we know we have to keep carbs down when on steroids. Some spirits eg vodka are lower carb. I only have the odd drink at the weekend, not weekdays

MamaBeagle
MamaBeagle in reply to PMRpro

In my experience doctors seem to be in the do what I say not the do what I do "brigade!

PMRpro
PMRproAmbassador in reply to MamaBeagle

Used to be said you were only a heavy drinker if you drank more than your doctor! I went to uni with them ;) OTOH, tremendous number of BAME healthcare professionals and many of them won't drink if they are Muslim.

A drink or two is fine and probably helps us cope with PMR. It is the drink of five or six that is a bad idea, as it is for everyone!

Hi, thanks for your reply. I agree! Tried to be really honest as I know I’m drinking too much. Will try my best to reduce all calorie intake this week in a bid to try and ease my conscience 😊

Most people don’t admit it. Do you listen to the Archers?

Constance13
Constance13 in reply to piglette

Wow! Is that still going on? I live in Germany so I didn't realise that series was still 'active'.

piglette
piglette in reply to Constance13

Yes, I think it is the longest playing drama on radio. Started 1 Jan 1951. It was been pretty dire during lockdown here as they had to scrap all the episodes they had recorded and rewrite them and had to record them on-line. It has improved a bit now though.

123-go
123-go in reply to Charliepeace

Charlipeace. I had to give up my evening glass of red (and a bit more if we were out for a meal or with friends) when I started on Leflunomide. I thought I would find it difficult but that wasn't so. I think it was all in my mind that I would miss it and have surprised myself as three weeks in I rarely give it a thought. I may treat myself to a bottle of Royal Flush non-alcoholic wine for Christmas: it's said to be very good 😜.

Charliepeace
Charliepeace in reply to 123-go

Thanks for your reply. I hope I can be as strong as you with the prosecco and carbs. 🤞 Keep well

I've just had a blood test and told liver and kidneys all fine and I know and my doc knows I drink over the 14 recommended units! 2 of my uncles both smoked heavily. One died from lung cancer at about 60 the other lived to be 99 and died from old age. His tongue looked like carbon paper...if you remember what that looked like!!

Also bear in mind that pred and alcohol can both deplete calcium from your bones. So make sure you have good calcium intake 👍

Hi, thanks for the advice. Good shout!

Hi, you may have read about those of us on Methotrexate & not drinking Alcohol because of the affects on the Liver as that does have an impact.

Low Carb is the way to help with the weight gain, l lost two stone earlier this year as l was borderline Type2 Diabetes & had a diagnosed Fatty Liver.

Welcome to the Forum

MrsN

Hi, thanks for your reply and advice. 👍

I couldn’t face my beloved wine until I got down to about 20mg. On a super low carb diet in order not to put on weight and prevent diabetes, I limited myself to two small glasses of wine a week. Now, hopefully out the other side in many ways, it is still the highlight of the week in these times but I stick to 6 units a week maximum and it goes all too quickly. One has to watch the inner dialogue that tries to make it ok to have a bit more; I’ve seen it so often. A friend of mine going through hell, living alone and struggling to work with cancer treatments said last week, “don’t worry, I’ve never used alcohol as a pick me up, just as a relaxer”. He is terrified of ill health but made his body process excess toxin while knowing really it was too much, but the gremlins said he had good reason. The trouble is with using alcohol to cope is that the dose needs to increase to get the same effect after a while. Or, the times without the helper feel harder. He has now faced making the choice directly without relying on the emotional ‘middle management’ to make the call. I think you know you are bordering on too much for you and to be honest it does sound like your liver could probably do without most of it. Nobody can tell you exactly if your liver is fine or not because damage susceptibility varies from person to person. I’m glad you got a good effect with the Pred. Watch the reducing speed and ideally jump in smaller doses so that you know what the effective dose was if it becomes too small to control the autoimmune activity.

Charliepeace
Charliepeace in reply to SnazzyD

Hi SnazzyD, thanks for your reply and excellent advice. I think you have read my mind and got it spot on. I just can’t believe the carb content in all the foods I enjoy! I thought cutting out all the usuals, bread, pasta, potatoes etc was going to hard enough but I downloaded an app and am amazed at how many carbs are in most “healthy” foods!!This is going to be harder than I thought but am determined to try.

SnazzyD
SnazzyD in reply to Charliepeace

It’s not forever but it feels like it. I had to go super low salt too which made my diet somewhat, let us say, lacking. It really is worth it and in darker times just think how much you are nurturing your body through this difficult time. I think we forget the body when the head and its baggage keeps insisting on the attention.

I lost the taste for it for a couple of years. Now I find that a glass of wine is better than painkillers for the low level flu feelings that go with these diseases. I have received no medical advice to the contrary. Little treats are good for us.

Thank you SheffieldJane, not feeling quite so guilty now 👍

OK!! Carbs are not the enemy. Moderation is the way forward. I eat potatoes, pasta, rice and homemade bread and no issues. It is about finding out what is right for you and I have a real problem when people ban food or food groups. I am a functioning alcoholic by which I drink up to 2 bottles of wine a day, hold down a senior management position working full time, and exercising 4 times a week. Obviously my alcohol consumption is well above the norm but I manage a team of 28 people and do my work well. If a couple of drinks make you feel better and relax you then go for it. And to be absolutely clear, I am not advocating alcoholism in any way, shape or form. But my family has a history of it, and I have learned to deal with it. I am planning on reducing my consumption and my husband is 100% behind me. And BTW I have lost weight since diagnosis coming on three months ago, just by eating sensibly and normally but also staying as active as possible. I was lucky in that I responded within 6 hours to 15mg. I am now on 9mg and all good. Don't beat yourself up about a couple of glasses. Stay well!

Loyd
Loyd in reply to Ainenicaodha

Hi I’m the same Ainenicaodha. Drink far too much wine of an evening but very functioning. I think it would be better to drink less but I’ve no bad side effects or weight gain. Liver results all good so fingers crossed. So don’t beat yourself up too much either Charliepeace. If it helps you get through these hard times so be it.

PMRpro
PMRproAmbassador in reply to Ainenicaodha

No-one is saying carbs are the enemy in the general run of things. Nor do we say NO carb,

However, when you are on pred it changes the way the body processes carbs and that puts you at risk not only of weight gain and hunger cravings but also of steroid-induced diabetes. Cutting carb intake where possible reduces those risks. Not everyone gains weight, not everyone becomes diabetic, but a very high proportion do. And cutting carbs does reduce the risks.

It’s possible to have a wonderful life without alcohol; I stopped drinking 33 years ago. Some of us develop an allergy over time. That was my experience.

Hi Ainenicaodha, thank you so much for your reply. You have made me feel so much better! This whole experience has been so overwhelming for me as I am sure it has for everybody and I’m still coming to terms with the whole thing. I think patience is the key and to stop beating myself up, concentrate on not tapering too quickly and to do my best to reduce consumption of all things delicious!Thanks for taking the time to post and best wishes

Luciejc
Luciejc in reply to Charliepeace

I have GCA since 8/19 and am tapering from Methyprednisolone. Now on 4 mg. and weekly Actemra injections. Like some here who have posted I too love my wine daily at dinnertime and sometimes a cocktail before. I too have had those thoughts that this is all excessive. We make our own wine so that doesn't help! My blood tests re: liver have always been a bit elevated. I have tried to cut back and it isn't easy for me. My blood work this week showed more elevation in ALT and AST results which have to do with the liver. Have not yet spoken to my doctor but know I must stop drinking. Just a word of warning. Good luck, I know I need it.

My rheumatologist said nooo alcohol. I still have the occasional glass of red or white. Everything in moderation. Nothing in excess. I am on 23 prednisone as of this morning plus Actemra every two weeks.

Hi Alvertta, thanks for your reply. I’m on it 👍

I haven’t had alcohol on pred as it can affect your digestive system I think

My experience is that alcohol and Pred didn’t and don’t mix well together. Too much discombobulation!

To be honest a glass or two ( very occasionally 3 ) is the only thing that has kept me going forward in a positive way during lockdown and having been diagnosed with PMR last October. I am also bipolar which is a fight too and have never become alcohol dependant but it relaxes me in the evening and I look forward to it! One needs some kind of quality of life!

Hi, I also put on a stone in weight ! I was starving all the time such a battle! My thoughts were what i could eat next ! I was on 40 mgs but now on 5 , so going to tackle the weight gain as im in the right frame of mind . Cant say about Alcohol ,as ive gone off all forms of it since my second flare.Such a shame in a way as enjoyed a couple off glasses ! But every cloud as they say! Will help with my weight loss . I think its ok to have the odd glass , just monitor. Best of Luck Vivx

Hi Charliepeace, like you I had to go up to 30 mgs pred before I felt relief . I managed to get down to 20 mg quite quickly and without any problems . However , after I had decreased to 20 mg it was a real struggle to reduce, even 1 mg at a time . My rheumy and GP were fine when I told them I was doing the DSNS taper and I came down 1/2 mg at a time . About a year after my diagnosis I had struggled to get to 15 mg and decided to take the methotrexate my rheumy had been offering me. I’ve been on it a year and am still only down to 9 mg, however I had an encouraging chat with my lovely GP yesterday. He said my blood tests were absolutely perfect (I admitted to having a drink or two these days - yes, I know I shouldn’t if I’m on methotrexate) and that he wouldn’t worry if I had to stay on about 7 &1/2 pred indefinitely ( my rheumy had said the same thing to me as well. ) neither of them have put pressure on me to reduce any faster than I want to . They both agree that if I wasn’t on methotrexate I wouldn’t have managed to get to 9 mg. I’m lucky that I can tolerate it .

I guess what I am saying is that your journey has started in a similar way to mine and you might find it very hard to drop from 20 mg to 15 mg and then feel upset about it. We all have different experiences with this disease so don’t let your medics try and make you a text book case if you’re not. Good luck !

I am not a big alcohol drinker, maybe once a week I have a beer. At first that beer was giving me a headache and I blamed Pred. but since worked out that I was dehydrated, so drinking much more water now and exercising more to keep weight off. Initially I lost 8Kg in lost muscle tone which flattened me. Then once diagnosed and started Pred I gained that back plus 5 Kg and holding.

One of the problems with pmr/gca is that we do not know how long the journey is going to be. My experience was that it took some time to make the mental adjustments, never mind deal with the physical. Treats became important, and that's where we have to be careful.

There are lots of really helpful posts about controlling carb intake, keeping up vitamin D, watching out for the eyes - cataracts etc to say nothing of the clear messages about taking it slowly - reducing pred as well as life compared to 'before'.

I have got to the stage of a good BMI, regular exercise, decent diet, plus alcohol on no more than 3 days per week, but at 72, have a heart age of 95!! Really depressing and presumably hello statins to go with the recently introduced BP meds.

The advice on here is so helpful. The more you can follow it, the better in the long run.

ps - it has taken me 8yrs- to get from 15mg to 6, largely because of too quick early reduction and flares.

Good luck

Legsy0714
Legsy0714 in reply to herdysheep

Hi. I wish you well in your battle. Please weigh up the statins with great care. I am 95% sure they caused my PMR plus other stuff like cramps in weird places.

I too think statins caused my PMR. Had such muscle pain I could barely walk. It took almost a year for the pain to resolve.

herdysheep
herdysheep in reply to Legsy0714

Thank you. I am not looking forward to staying but at least have PMR already! Sadly I think my choices have disappeared.

That was a good and honest opening question Charliepeace, which has prompted so many answers that reflect so many varying personal experiences.Everyone’s different.

Here’s my experience, for your information.

I frequently enjoy a couple of glasses of wine in the evening. I don’t think I “need” them: in the days when I went out and did other things (I mean pre COVID, going to the cinema etc) I didn’t miss it. Equally, in the days when I went out and shared food and wine with friends it was really nice to socialise like that. But that’s not the point of your question. In short, having PMR and taking Pred has not changed how I drink alcohol.

I cannot find anything in the medicine leaflet that says about not drinking while taking Prednisolone and my doctor never said anything about not drinking because of having PMR. However, her parting shot to me, after diagnosis and prescribing Pred, was "try not to put on weight”.

You have put on weight so it does sound like you need to include your drinks in your assessment of how many calories, in general, and carbohydrates, in particular, you are consuming.

I am lucky in that my preferred diet is a healthy one and by many people’s standards very boring and repetitive! I don’t have a sweet tooth so I hardly ever eat cake, biscuits or chocolate.

Even given that, it is swings and roundabouts. There’s natural sugar in milk, but there’s calcium and protein too . . .

What I am not sure about, is whether “complex carbohydrates” (whole wheat, oats, etc). are not as bad (in terms of metabolising when on steroids) as “simple carbohydrates” (processed white flour products, sugar).

Might be worth investigating. Maybe someone here knows.

I am keeping an eye on my weight and have been OK so far. I make a point of cycling and/or walking every day. I aim to live as close to my preferred lifestyle as I can.

(For background info - I was lucky and responded right away, with complete loss of symptoms, to 15mg pred. Reduced to 12.5 after 3 weeks; then to 10 mg after another 4 weeks. Now just finishing 5 weeks on 9mg and about to start 8mg. I have a blood test at the end of each period to check the inflammatory markers before going onto next dose. Fingers crossed.)

Best of luck to you

PMRpro
PMRproAmbassador in reply to ImC_

In terms of carbohydrate - complex and simple carbs do the same though with complex carbs the peaks are not so high as the release is slower. But I imagine they require the same amount of insulin overall. They are better probably in that they don't spike the levels but it is rather more complicated than that - isn't it always! Pred triggers the liver to release random spikes of glucose from the body stores of glycogen in the muscles - and, since that can't be influenced easily, the aim is to reduce the BS levels achieved through diet as much as possible. There are multiple studies that show low carb reduces the Hba1c level a lot, moderate carb reduces it too but less and there are some surprising findings about the "better" or "worse" forms of carb in the context of Japanese diet at least!

But the bottom line is everyone is different - while Snazzy and I need to get down to 20g carbs a day to lose weight (I can maintain at a higher level) someone else may be fine with 40, 80, even 100g carbs a day which is still much lower than the average dietary level in the UK (200g for women, 250g for men) and, even more so, the USA (300g and upwards). The quality of carbs is also important - and many processed carbs tend to be low quality, like the tye of fat in them. It's like tapering your pred dose I suppose - cut the carbs until you find where YOU need to be. One former member of the forum cut her carbs by 25% the first month, then another similar amount and again after another month. It was easier to get used to the change and she could see how much difference it made. If you don't stop gaining or start to lose it is very likely because you are mistaken about what you are eating - several have wailed they aren't losing despite eating low carb but it turned out that they were snacking on fruit with all that healthy but nevertheless carby fruit sugar ...

ImC_
ImC_ in reply to PMRpro

Thanks PMR Pro. Although that’s a bit depressing!! That not even a healthy complex-carb diet is necessarily a healthy diet when it comes to steroids and diabetes.

Although I am slim and feel well, my Hba1c is exactly on the borderline that defines diabetic or not diabetic. (I think I am called ‘pre-diabetic' but have mislaid my notes.)

Nothing can be taken for granted.

Like all of us, I am walking a tightrope. Still, arms out, don’t look down, one step at a time . . .

PMRpro
PMRproAmbassador in reply to ImC_

And that is the point - pred moves the goalposts. But it isn't that bad - honest ;)

Hi i have had to becareful with my weight as i have got high cholesteral, so instead of statins i decided to reduce my cholestral intake to 20 grms a day, no more than 2000 cals, but i dont count them, just take note how many i have per meal.Since August i have lost nearly a stone.

The reason i did not want to take stations is because i am on Pred,Mtx and Paracetamol, and thought give it a try, my blood test this week revealed i have gone from 6.6 to now 6.1, not a lot i know but the doctors are pleased, so i am going to continue.

Also i dont drink because of the mtx, but never did when i started Pred,which was my choice also.

Good luck

Hi Charliepeace, the problem with any alcohol drink is the sugar, sugar is the worse cause of inflammation. We take Pred to try the control the inflammation, the side effect is the PMR pain. Pred helps with water retention, weight gain. I try to take all inflammatories out of my diet to control the inflammation. Good luck on the rest of your PMR journey. 🙂

Over the 11years I've been on prednisilone, various doses, various doctors, all have their own different opinions, from my experiences. Baffles me to be honest. However, being on 5 comfortably for a long while, my new doc suggested trying to reduce. Dropped to 4 daily for a month, then 3 likewise. Not good for me. Doc Suggested a very slow decrease. For example. ,4 one day, 3 and half the next, 4the next, and so on for a month etc. Much kinder on my body and suits me. Take it easy but hold in mind that we are all different. Guess you are on Alendronic acid or similar ,? x

Hello I too am fairly new to the forum - I did not get a recurrence of headaches once I was on prednisolone and am now down to 9mg and on methotrexate which is causing no problems. I have been beating myself up a bit re alcohol - at one stage I was a heavy drinker and was told to cut down by GP which I did. I have since stuck to a couple of glasses of wine a night with the occasional G&T. Since being on methotrexate I have been more careful to measure the units (was surprised how small a unit is!!) I have started mixing the good stuff with alcohol free wine and it works quite well as long as it is about 70% to 30% good to bad! My husband has alzheimers and we have kept him virtually alcohol free - the good zero wines are Natureo and Artis - the health professionals have all said that sticking within the limits is OK but since I did not have grandchildren until my early 70's I want to hang around as long as I can!! I admit that I look forward to my glass of wine - that and the dog (hence the name) have kept me sane !

I have had PMR for 5 years and still on 10mg pred. daily. Never had a problem with weight gain (BMI 22) but did drink too much wine. Decided to buck the lockdown trend and halve my wine intake from 4 bottles a week to less than 2 in April. A month later I'd lost nearly half stone in weight. That's just on reducing wine intake.( I' m lucky I've never had to worry about carbs.) Delighted, especially as that wasn't the intended outcome. Recently had a full blood work up and liver functioning fine as far as that's concerned.As far as reducing pred. is concerned, I have had problems yo-yoing because I tried to reduce too fast. I've been on 10mg forover 2 years now with several unsuccsssful attempts to reduce. 15mg to 10 mg is quite a jump....and you've only been on it for 2 months? Please take all the advice you can from responses and other posts and consider a more tapered reduction. I so wish I'd had that advice 5 years ago. Good luck😊

PMRpro
PMRproAmbassador

I supppose it should be pointed out that alcohol has a pro-inflammatory effect - so cutting it may have more benefits for PMR/GCA patients than is at first apparent.

Hi C - I put on a total of 2 stone over 3 years and it really dragged me down mentally and physically! The higher the dose the more my appetite but now after 4 years I’m back down (again) at 4mgs and stopped blaming my Preds because I’m at such a low dose and joined Slimming World and have lost the 2st BUT I realised early on that wine is full of sugar and cut right back on that! It was cakes that were my downfall. Now I have two glasses of wine on a Friday and Saturday and enjoy it so much more! Good luck!

Just wanted to say that I was overwhelmed by all the response to what now seems like a silly question. I was just worried about an adverse effect of drinking alcohol with the condition and what it could do to my liver.I now have come to realise that I am at the beginning of possibly a long journey like most of you are battling and have taken on board all of your advice and tips. I am very grateful for you taking the time to reply and it is so good to know that you are all there in case of troubles ahead. I will concentrate on your advice to take things slowly and to not try to rush things.

Thanks again and best wishes

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