Caffeinated or decaffeinated? 🍵 : Morning Peeps 🙂 My... - NRAS

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Caffeinated or decaffeinated? 🍵

Moomin8 profile image
72 Replies

Morning Peeps 🙂

My question to myself today is:

Should I be drinking caffeinated or decaffeinated drinks?

I currently drink decaffeinated tea and coffee, with the occasional caffeinated one when decaffeinated isn't available. However, I've read a few articles recently, that suggest caffeine can be good - I might change. This being one:

myrateam.com/resources/can-...

I seem to remember giving up caffeine at the beginning of my journey, when I was put on methotrexate 🤔It took a while for the shocking withdrawal headaches to subside.

I have tried to search for some conversations on here, which would be relevant to me, to no avail.

Any ideas/opinions/experiences from you lovely people?

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Moomin8
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72 Replies
Frances_UK profile image
Frances_UK

Seems to be lots of conflicting advice re caffeine and methotrexate so I concluded that I wouldn't alter my intake unless I had problems. Which I haven't so far.

Coffee is meant to be good for your liver anyway.

cathie profile image
cathie in reply to Frances_UK

Yes the gastroenterology department here in Edinburgh RI has been doing research and encourages patients to drink good strong coffee.

Moomin8 profile image
Moomin8 in reply to cathie

Excellent! Caffeinated?

cathie profile image
cathie in reply to Moomin8

Very.

Blodynhaul profile image
Blodynhaul in reply to cathie

Wonderful to know - thanks!

allanah profile image
allanah

I've stuck with caffeine as I'm addicted lol and withdrawal is too hard! It also keeps me going and doesn't seem to have an impact on my pain or inflammation.

Blodynhaul profile image
Blodynhaul in reply to allanah

Same here!

skinnycappuccino profile image
skinnycappuccino

Good morning Moomin8 and what an interesting question! Hats off to you for being able to quit caffeine in the first place, I wouldn't know how to cope without it 😅 I drink it because it makes me feel happy and alert but I've never thought about whether it's healthy/beneficial to be honest - I just don't want to cut back on something I like because RA has already taken a lot away from me so it's not getting my coffee as well!! I just figured it's not an issue if I only drink 3 coffees a day (any more and I get very restless/hyperactive). At least, I've never noticed any difference re flares etc, I don't have any food triggers either . the thing that does it for me seems to be stress. This probably isn't helping much 😅 Have a lovey day xxx

Lolabridge profile image
Lolabridge in reply to skinnycappuccino

Thank goodness, a fellow proper coffee drinker! It's a great pick-me-up and I couldn't do without it. I have a freshly brewed ground coffee (large mug) without milk in the morning then an espresso later in the morning and another after lunch.

skinnycappuccino profile image
skinnycappuccino in reply to Lolabridge

I must admit I usually have all my 3 coffees before 8am 😅 The first one right after getting up, the second one while cooking my porridge and the third soon afterwards when I'm working on my computer! I have a decaf after lunch with my dark chocolate though and usually 2 black teas (one in the morning and one in the afternoon) but that depends on my fatigue. At the moment that's not an issue and feeling quite wired on my 3 cups of coffee so I'll not have black tea on top!

Moomin8 profile image
Moomin8 in reply to skinnycappuccino

😂😂🤪

skinnycappuccino profile image
skinnycappuccino in reply to Moomin8

🤪 about sums it up 😅

That's a decaf now of course 😇!

cappuccino
MJSlide1958 profile image
MJSlide1958 in reply to skinnycappuccino

Wow brilliant, therefore the leaflet for MTX should state "can affect some people". Well done!

Blodynhaul profile image
Blodynhaul in reply to Lolabridge

Me too! it's one thing I always look forward to & enjoy & need. To cut out caffeinated coffee, especially when the rest of your life is such a challenge, would be almost the last straw. Also de-caff is so HORRID!

MissMinto profile image
MissMinto in reply to skinnycappuccino

I’m the same - two cups of proper coffee in the morning for that ‘hit’ !

AgedCrone profile image
AgedCrone

This article virtually says suck & see……”one member reports” is hardly a scientific study is it?Surely if somebody thinks coffee …..or anything containing caffeine brings on a flare….they would avoid it?

Dobcross1 profile image
Dobcross1

Funnily enough, I never drank coffee before RA and MTX but now I have a couple every day (with caffeine) just because i like and enjoy it. After I'd been drinking it for a while, I read that it helps with MTX side effects and I'd noticed that too (though it could have just been coincidence that the side effects lessened anyway). If caffeine doesn't affect how you feel RA wise, I'd go ahead and enjoy it!

rabbits65 profile image
rabbits65

My doctor advised me to stop drinking tea as I was getting too many urine infections . He also advised against caffeine when I got heart palpitations . So I now drink decaffeinated Tea and I get no palpitations and urine infections are less . However! I agree that caffeine can give us extra boost !!!

patrickd profile image
patrickd in reply to rabbits65

Interesting! I didn't know caffeine could cause urinary infections! I used to drink ALOT of tea and would get frequent urinary infections. Tea was never mentioned as a possible culprit but oddly too, I do not drink tea (other than Green Tea) anymore.

Frances_UK profile image
Frances_UK in reply to patrickd

I think it's more that caffeine can dehydrate you because it's a diuretic, which then increases UTI risk.

rabbits65 profile image
rabbits65 in reply to patrickd

When I went to see the doctor in Eurology at the hospital they specified that drinking tea wasn’t good at all . Also my GP . Reasons I’m not sure of . I was advised that if I need tea at all to drink decaffeinated . Also it helps people decrease palpitations . I’ve had no palpitations at all since drinking decaffeinated and my bladder feels better . That’s all I know .

patrickd profile image
patrickd in reply to rabbits65

That is exactly why I really enjoy this site so much, LEARNING! I was always told to drink tea, it's good for you compared to coffee but tea does have more caffeine. It can be exhausting to monitor your diet. I am going to try to stick with decaf everything and drink more bottled water.

MJSlide1958 profile image
MJSlide1958 in reply to patrickd

With drinking Green Tea, do you not get the urine infections anymore?

patrickd profile image
patrickd in reply to MJSlide1958

NO, BUT to be fair I do believe my age and some other factors changed things. I am well past an early Menopause (don't even know if that had anything to do with but maybe). I haven't gotten a single urinary infection since I was 36 (stopped taking birth control pills completely and I swear those had something to do with my frequent infections). I do not think it is anywhere officially linked but when I stopped the pills the infections stopped!

MJSlide1958 profile image
MJSlide1958 in reply to patrickd

So good that it is all sorted now! Thanks

patrickd profile image
patrickd in reply to MJSlide1958

Sorry, I wasn't of any help at all.😐😐

MJSlide1958 profile image
MJSlide1958 in reply to patrickd

You have been helpful, thanks

patrickd profile image
patrickd in reply to MJSlide1958

I wish. I enjoy green tea and was told it's good for you so that's about all I know.

MJSlide1958 profile image
MJSlide1958 in reply to patrickd

Thanks

I drink tea and switch to decaff in the evening. Have a one-shot latte occasionally, if I'm out. I have vertigo, so thought I'd cut down incase it helps. (PsA, on Biologics)

patrickd profile image
patrickd in reply to

Totally makes sense!

sunnyweek profile image
sunnyweek

I drink caffeinated coffee, just not at night, and lots of tea; over the years I've had RA I've switched to decaffeinated just to try it but prefer caffeinated.

patrickd profile image
patrickd

That is a tough one for me! I have the gift of "Fibrocystic breasts" (causes painful lumps in my breasts..geez RA isn't enough), anyway, caffeine is a trigger. I have it in the morning (limited) and thereafter non-caffeine only. Last year my "Fibrocystic breasts" were just horrible (very tender, painful, and scary lumps). I gave up drinking regular milk and switched to Organic Daily products only! It worked amazingly! I haven't flared since of course the RA is a different situation.

Neonkittie17 profile image
Neonkittie17

I’m so sensitive to caffeine after having decaf for over 30 years that if I have an occasional caffeine coffee I feel sick and shaky. I find it very dehydrating too. I’m used to decaf tea also and like them both, and don’t touch fizzy drinks as they are too gassy, but it is all personal choice. Sorry not to be of scientific help but I don’t know enough to say why it is good for you etc! We have a coffee lover in our midst so maybe they will respond! ☕️☕️☕️☕️

Lolabridge profile image
Lolabridge

Caffeine thank you - usually 3 cups a day, strong and black but not after 2pm or it keeps me awake at night!

Dr William Li says it's ok to have caffeine and it's good for our DNA (I have his book Eat to Beat Disease which is fascinating). He sent me an email about it only last week. Here's a link I hope will work.

mailchi.mp/drwilliamli/the-...

I would prefer to drink caffeinated tea rather than decaff coffee. Some decaff coffee is made by using vile chemicals, especially instant. The Taylors brand of decaff ground coffee is made by the water-extraction method, which is safe I think.

Neonkittie17 profile image
Neonkittie17 in reply to Lolabridge

That’s what I have .. Taylor’s decaf filter coffee. They make it for Betty’s too. (Good old Yorkshire .. Taylor’s of Harrogate!)

in reply to Neonkittie17

I like their ‘lazy Sunday’ one 😋

Neonkittie17 profile image
Neonkittie17 in reply to

I don’t know that one. Decaf?

in reply to Neonkittie17

Nope..

Neonkittie17 profile image
Neonkittie17 in reply to

I don’t drink caffeine coffee

MJSlide1958 profile image
MJSlide1958 in reply to Lolabridge

I have read this too, especially Yorkshire Tea, which is tasty tea I must say!

in reply to MJSlide1958

Also ‘Taylor’s’ ..

MJSlide1958 profile image
MJSlide1958 in reply to

Yes

Deeb1764 profile image
Deeb1764

I have one minimum good coffee a day as I love a good coffee but if I feel I want one more I do! It is what I call my treat!

Lolabridge profile image
Lolabridge

For decaff real ground coffee lovers my pregnant daughter recommends the Pact brand that she buys online.She thinks it’s by far the best and in second place she recommends the Union decaff offering.

Gottaloveastaffy profile image
Gottaloveastaffy

Oh my goodness ‘I have MTX and have a large coffee in the morning and then one after lunch as was told by Rheumy it would help with fatigue along with my 15 min nap in lunch break xx

skinnycappuccino profile image
skinnycappuccino in reply to Gottaloveastaffy

I like your rheumy! He should give you a coffee prescription 😅 Mine once told me to drink more Guinness to put on some weight 😃

Sheila_G profile image
Sheila_G

I too only drink decaff coffee. I changed long before my RA diagnosis because caffeine made me feel ill so haven't touched it for many years.

Fra22-57 profile image
Fra22-57

My husband was advised to drink decaffeinatinated as has prostrate problem so thought I would too.Saved money not buying both😉.Well we do drink caffeinated sometimes when out thou. Didn’t cause any withdrawal symptoms I don’t think

Mmrr profile image
Mmrr

Always caffeinated, one proper coffee per day and copious amounts of tea.

KAISETH profile image
KAISETH

When visiting hospital 're water works problem was told to drink Yorksire decaffeinated tea

Moomin8 profile image
Moomin8 in reply to KAISETH

That's what I have 🙂

MJSlide1958 profile image
MJSlide1958 in reply to KAISETH

That one may be chemically treated??

Egpa profile image
Egpa

I have been on mtx 💉 for 4 years and was told at the beginning to give up all caffeine. Tea, coffee,fizz, choc. Has helped loads once I got rid of the bad heads coming off it all.

MJSlide1958 profile image
MJSlide1958 in reply to Egpa

Stated on MTX leaflets.

GlamNana profile image
GlamNana

I switched to decaf when I was diagnosed the a form of colitis. Inflammation in my bowel. It did make a difference. If I am out with friends for coffe and no decaf is available I will have a caffeinated one. I can tell the different as it makes me go to the toilet more.

Haz58 profile image
Haz58

I gave up caffeine years ago. If I have it now I get terrible palpitations, shakes and headaches. Nothing to do with RA I’ve not been diagnosed that long. I might have a caffeinated coffee if I’m out and desperate but don’t like what it does to me now.

in reply to Haz58

There is an element of sensitisation. I used to quite literally drink 2 litres of energy drink a day on top of 6 to 8 caffeinated coffees without any problems at all. Then I developed an arrhythmia and was told to avoid all caffeine to better manage it, so I did. Now I only need half a spoon of instant coffee in a very large mug to give myself palpitations and feel quite naff 🤷‍♂️

madme1 profile image
madme1

Hi Moomi 8 I gave up caffeine due to it being a bladder irritant I believe.

oldtimer2 profile image
oldtimer2

Looking at the published literature is not helpful as almost all the studies are observational, often on small numbers and very prone to confounding. I think you should go with whatever suits you personally by trial and error!

patrickd profile image
patrickd

I honestly feel it depends on YOU. From previous posts, I am observing that apparently each one of us shares RA yes but it seems we all are sensitive to certain things more than others when it comes to flare-ups. I've taken some of the medications y'all are currently using with success (thank God for you), resulting in either no results, results but unbearable side effects. We all for some unknown reason, have different reactions to different foods, additives, medications, etc. No one size fits all I guess. I try to do the "everything in moderation" life plan. How can I go wrong?

Murraymint49 profile image
Murraymint49

I cut out caffeine when I was diagnosed with af. I really miss it ,but I have one cup of caffeine in the afternoon to give me energy. Do what ever works for you ,we all vary

MJSlide1958 profile image
MJSlide1958

I think when reading the MTX leaflet it states not to drink black tea??? But I am sure the occassional cup of tea is good??? Decaf is I believe chemically treated. But please investigate, not sure!!!

JenHasRA profile image
JenHasRA

I enjoyed reading everyones comments about their coffee and tea rituals. So so good. I remember them well. I said goodbye to coffee for these reasons (are they 100% true..who knows anymore?): It has zero nutritional value - not one enzyme, mineral or vitamin. It does contain antioxidants, but they don't come close to counteracting the environmental havoc it causes from dehydration and rise in acidity. It weakens your bones, depletes your supply of B vitamins, and inhibits iron absorption - perpetuating anemia and limiting red blood cell production. The solvents commonly used to extract the caffeine from the bean....not good, unless you are cancer. I felt like I couldn't give it up when I realized I should. I went down to 1 cup a day, followed by a cup of hot water and a slice of ginger root for about 5 days. Then I went solely with the Hot Ginger Elixir. Guess what - I have come to long for its taste just like I did coffee. And if you really want to start your morning off right - try 3/4 cup of celery juice on an empty stomach (don't add anything - just suck it down through a straw). It takes away my morning stiffness in 15 minutes.

Leics profile image
Leics

I’ve always figured that my bowel is used to certain amounts of coffee (caffeinated) when I’ve had decaf usually when on antibiotics I’ve found my body doesn’t like it. I’ve never had withdrawal symptoms when excluding it but I keeps me regular so although I tend to have redbush tea (without milk) at night so it doesn’t keep me up. I would stick with the caffeinated black coffee I’m used to as I limit dairy in my diet. I’ve never been anaemic in my life either in fact my red cells are always pretty high and have to avoid things which contain too much iron. So yeah one side doesn’t fit all. Go with what you’re used to and if it causes problems then change it. My sister is allergic to caffeine and can’t drink coffee or tea with caffeine as it makes her violently sick.

orange33 profile image
orange33

Hi tried decaf coffee a good few years ago when first diagnosed with RA gave me horrendous headaches. Tea irritates my bladder but can’t give up so try to be very good and drink very lightly flavoured water. Ido have occasional cup of ordinary coffee with cream😊

Moomin8 profile image
Moomin8

Well, I've cleaned out my coffee machine and just have a lovely caffeinated coffee! Mmmmmm....delicious 🥰

Coffee machine
Moomin8 profile image
Moomin8

It's rather pot-luck as to which one I have 🤣I cut the strength label off which matches the colour pod....well, it usually does! I like a surprise!😅

Coffee

I need 4 coffees each morning to get me going! No caffeine after midday though. There is a mountain of contradictory advice over coffee. Drink the proper stuff is my only recommendation 😆.

andy7551 profile image
andy7551

I Just quit caffeine/coffee/tea completely 3 days ago, I was addicted to coffee, even though I didn't drink it after 4pm I would still have problems with poor sleep. Dreaded doing it, but pleased to say that combined with going to bed at a decent time time, I have not felt tired or lacking in energy through the day or felt the 'need for caffeine' at any point! Really thought would struggle, I had just been kidding myself with sporadic bedtimes and too much late night screen time etc, which made me tired. Bit of a vicious cycle, it is a drug.

Moomin8 profile image
Moomin8 in reply to andy7551

Well done you!! 👏🏻

Chockyuk profile image
Chockyuk

I didn’t know anything about caffeine and Mthx 🤔 is there an interaction?I gave up caffeine years ago, but mainly because I was constantly wanting to go for a pee! It helped in that department, but someone made me a normal coffee in work the other day, I was as high as a kite, my heart pounding, hands shaking 😱

So it’s caffeine free tea and coffee in our house.

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