Has anyone's doctor/pharmacist told you avoid caffein... - NRAS

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Has anyone's doctor/pharmacist told you avoid caffeine on MTX?

DaniBeeLcLa profile image
17 Replies

My pharmacist told me to "caffeinate carefully" Huh? I only drink one cup (very large!) in the morning and maybe a soda on the day after MTX to help combat fatigue/brain fog.

Anyone else told this? How do you deal with low energy days?

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DaniBeeLcLa profile image
DaniBeeLcLa
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17 Replies
Khow profile image
Khow

No, I was never told this when I toke it. I was on it for 6 weeks then had to stop due to side effects. Hope all goes well for you. X

I've never been told this. However it is important to avoid dehydration while on Mtx, perhaps that's a factor? I love coffee, 'going out for a coffee' is something I seriously enjoy. But I often ask for a glass of water alongside.

DaniBeeLcLa profile image
DaniBeeLcLa in reply to

Postle and everyone, thanks for responding! My pharmacist told me that its because MTX revs up your metabolism and messes with blood sugar. I already had/have problems with hypoglycemia so have to 'schedule' snacks on MTX day and a day or so after to keep level. I love my coffee with chicory though so not giving it up-lol! I'm usually good about sticking to one cup unless I have the littles for the day...

nomoreheels profile image
nomoreheels in reply to DaniBeeLcLa

Hiya Dani. I'd check with your Rheumy but contrary to what your Pharmacist says I understand that MTX is an antimetabolite, it's how it works for us with RD. It's intended to work on the cells which make new DNA for formation of new cells, this is why some experience hair loss, mouth ulcers & sometimes anaemia. So as we say RD is our overactive immune system mistakenly attacking itself these are the metabolites MTX suppresses as opposed to revving them up.

Coffee itself doesn't contain sugar, that is unless the beans have a shiny look to them. If you're struggling with keeping your blood sugar levels down avoid these, this is because during the roasting process sugar is added giving it the shiny coating (look for torrefacto or sugar roasted on the ingredients list). On a positive slant coffee contains polyphenols, molecules that have anti-oxidant properties & believed to help prevent inflammatory illnesses, including type 2 diabetes. As well as polyphenols, coffee contains magnesium and chromium. Greater magnesium intake has been linked with lower rates of type 2 diabetes, according to Diabetes UK. The blend of these nutrients can be helpful for improving insulin sensitivity, which may help to offset the opposite effects of caffeine. Chicory is another story, that's loaded with sugar but the good news is they're good sugars for someone with diabetes. It's so low on the glycemic index it doesn't even score, woohoo! Caffeine.... well if it doesn't cause flares there's no point worrying about it. So unless you're drinking bitter or strong coffee & adding sugar to balance the flavour I say enjoy your coffee!

DaniBeeLcLa profile image
DaniBeeLcLa in reply to nomoreheels

Bless you for saying I can keep my beloved chicory in my coffee. Its actually more a matter of keeping my blood sugar up rather than down...sugar crashes are no fun for anyone. I get cranky, then 'not hungry' because my decision making has gone off-line, nauseous, start crying uncontrollably and then pass out. Family has learned to recognize these signs and feed me before we get to nauseous/ crying. Not usually a problem unless we are very busy, out and about ....husband tends to think because he doesn't need to eat, I shouldn't either...I now take healthy snacks when we'll be out for the day.

Don122 profile image
Don122 in reply to DaniBeeLcLa

Definitely not an issue with blood sugar. In theory, caffeine may reduce the effect of methotrexate, which works, in part, by increasing the amount of an anti-inflammatory chemical called adenosine in areas of inflammation. Caffeine is an adenosine-receptor antagonist, meaning it blocks the effects of adenosine. Work done in a lab showed that in animals, adenosine-receptor antagonists, such as caffeine, reduced the anti-inflammatory effects of methotrexate.

However, this has not been shown in humans, so as long as you don't get crazy with caffeine I would not worry about it.

Moomin8 profile image
Moomin8

Hi - I remember something about that at the beginning so:

I now have decaff tea and coffee - don't notice the difference now; had a mighty headache for the first week though! I presume this was my body coming down from caffeine 🤔I don't worry if I drink a caffeinated tea or coffee if that's all that's available though.

helixhelix profile image
helixhelix

Yes, quite a few people have been told this. If you look for a post by Bon1 called coffee and tea? you'll find a previous post on this. But two sides to every story, so also look at Simba's post from a couple of days ago about the virtues of coffee.

Moomin8 profile image
Moomin8 in reply to helixhelix

I heard recently, that the less roasted the coffee; the better it is for you. I've also heard that decaff holds similar good properties to caffeinated coffee?

Matilda_1922 profile image
Matilda_1922

I found I couldn't take coffee didn't taste right plus increased nausea so I stopped having coffee. There are other foods I cannot take due to increased nausea too.

Creakywrists profile image
Creakywrists

The leaflet in my metoject box says " alchohol as well as large amounts of coffee, caffeine containing drinks and black tea should be avoided during treatment" but it also says elsewhere that it should not be prescribed to someone "who drinks large amounts of alcohol" . I showed it to my GP and she hadn't heard of restricting caffeine as well as alcohol, but suggested cutting down to a more moderate amount of coffee - I used to have a cup every couple of hours.

I now use a small mug and drink more decaff coffee and tea through the day. Don't drink much alcohol anyway, as I find it easier to be a non drinker apart from high days and holidays when I have one long one.

ruth_p profile image
ruth_p

I drink lots of Pepsi max and I've had no effects

thelmar profile image
thelmar in reply to ruth_p

I found that aspartame (in Pepsi Max) kept me awake to the point where I could hardly string a sentence together. Soon as I cut out aspartame I went back to sleeping normally.

Nothing to do with RD by the way.

Thelma

DaniBeeLcLa profile image
DaniBeeLcLa in reply to thelmar

Glad someone else doesn't like aspartame! It makes me nauseous. ..hubby can keep his Pepsi and I'll keep my diet creme soda.

No, I never heard that... Like you I only drink one cup of coffee per day and sometimes a soda on Friday nights with pizza - ha ha

Ive bee on mtx for 22 years and bever heard of tjis.

LizzieR profile image
LizzieR

No, nor me. I don't drink coffee, but I do drink a great deal of tea- and the odd diet coke/ Pepsi.

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