methotrexate

[Dexter1414]

who is on methotrexate and how many do you take a week and I have RA and my hands always feel hot and my feet anyone else the same what foods does everyone eat as I wa t to eat more healthy next year man’s what not to eat with RA

[Runrig01]

I take 10 methotrexate tablets a week, so 25mgs. I’m also on a biologic. I’ve always eaten a fairly healthy diet, cooking my meals from scratch. I do tend to avoid eating products with raw eggs, or unpasteurised products or blue cheese. I was given a sheet by my rheumatologist telling me what to avoid, when I started biologics. Other than that I eat a normal healthy diet.

[JenniferW]

Originally I was on 25 mg a week, then after I was put on a biologic and after things were finally brought under control it was dropped to 20 mg. We tried 15mg, but that meant it stopped being effective, so currently at 20mg, which is a balancing act between the side effects and how well it works.

Diet wise the general advice from the doctors and NRAS seems to be eat a wide range of foods to keep nutrition levels up. Fruit and veg and good nutritious food like eggs and fish is important.

The only I was told to avoid by rheumatology is coffee as it contains something that triggers inflammation, but that is easier said than done when you need to work.

Some people find avoiding a particular group of foods is helpful because they realise they are intolerant to something, but it is important not to assume that just because one person finds avoiding e.g. tomatoes helpful that it will work for you.

Cutting out any particular group of foods will have an impact on your health if you aren't careful to make sure to replace the lost nutrients from another source.

[purplecyclist]

I've been taking 25mg per week of methotraxate for nearly a year and the hot hands and feet cooled down in time. I was advised to limit alcohol so I cut it out and I decided to reduce ultra processed foods and eat more home cooked foods but the only advice from rheumatology was mediterranean diet.

[cyberbarn]

"The only I was told to avoid by rheumatology is coffee as it contains something that triggers inflammation, but that is easier said than done when you need to work."

I am not sure where the rheumatologist got that one, as current evidence shows that coffee has an anti-inflammatory effect. Further, that any increase of risk of RA in coffee drinkers is likely to be confounded by all the other things that coffee drinkers do or don't do.

Don't feel bad about drinking coffee if that is your thing!

And don't always believe your rheumatologists when they make these claims. Ask them for the citation. Mine recently said there was evidence that a two week course of steroids helped OA. As an academic researcher I couldn't find the peer reviewed evidence for that one!

[JenniferW in reply to cyberbarn]

It was in one of the leaflets they give you when you get diagnosed. I ignored it at the time, because I thought Oh well, too late now!

I read something about it recently and looked into and found an article (a scientific one, not the Daily Mail!) that explained what the substance is. Needless to say, now I am looking for it again, I can only find results that say coffee can be good for you

[Jfw24]

I’ve been on it three years and take 8 x 2.5 on a Sunday. I used to have hot hands and feet but no longer, I’ve cut out dairy by about 90% and I find it helps

[Dexter1414 in reply to Jfw24]

What should I not be eating and what should I be eating and someone said coffee is good for you I thought it wasn’t

[Happy5]

Was on 20mg tablet changed to 20mg pre filled injection, weekly.

Prior to diagnosis often found my joints felt as if on fire, when my meds work and I'm in remission the burning, hot symptom ceases. On another note my feet prior to RA used to feel very hot during menopause.

My diet tends toward Mediterranean.

[Dexter1414 in reply to Happy5]

My feet and hands feel hot all the time I’m on 5 tablets once a week but I think if you have Menopause Aswell makes it worse but I wouldn’t know if I had that or not

[CoastalLiving]

Hi there,

I have just started on the MTX Injections, 15mg .... I tried tablets earlier this year and was so ill on them had to stop taking after 7 weeks. I have not noticed hot hands and feet, I am in fact the opposite and am always cold. Not sure of the root cause but likely a combo of under active thyroid, menopause, anaemia and the RA 🤷‍♀️🤷‍♀️

I have found rheumatology to be woefully bad at understanding anything to do with diet and food. Though I did recently go to the scientific meeting at my hospital and seems they have finally realised a connection.

When I was diagnosed 18 months ago one of the first things I did was go on an Autoimmune Protocol (AIP) elimination diet ... for 8 weeks I cut out 8 food groups and then you slowly re-introduce to find out what disagrees with you. Reintroduction has been hard but sometimes I hit on a food that clearly makes me feel rubbish instantly (sugar for example) and am about to get some guidance from a functional medicine doctor or nutritionist. But what it has mainly meant that I have eat no processed food in nearly a year. I stopped drinking over 2 years ago, before my diagnosis to try and help with perimenopause anxiety, it helped and then when I was diagnosed there didn't seem any point in going back.

I agree with what someone said below about what works for one person, doesn't necessarily work for another. Hence why I did the elimination diet to try and repair my gut from leaky gut (think that still needs some work) and to work out what was OK/not OK for me. There is a ton of research out there about diet and autoimmune and gluten, dairy and added sugar are definitely up there with being inflammatory. I have just watched an incredible docuseries from the platform Zonia and am signed up to the platform Commune - all of which have research on there by doctors and resources to help you navigate it all.

Sorry for the long reply - it was helpful for me to reflect on where I have got with my diet as many will say it has no impact at all and I have felt somewhat disheartened by it all. This docuseries has got me motivated again and my next mission is to really get the 'leaky gut' or intestinal permeability sorted!

[Larachez2102 in reply to CoastalLiving]

Hi can I ask what side effects you had please. I tried the injections and was soo ill of them they changed to tablet 10mg I start them on Monday? Thank you

[CoastalLiving in reply to Larachez2102]

So on the pills, I has constant nausea, loss of appetite, heart palpitations, couldn't sleep for best part of the week after taking them, mmm and a couple of other things I now can't remember. I only stuck with them for about 7 weeks because they were getting worse rather than better.

But as everyone says here we are all different and what works/doesn't work for one can be so different for another.

I am curious about your side effects with the injections? I am now on injection 3 and the tummy cramps and diarrhoea seem to be constant now. Trying not to be at my wits end about it all 😬😬

[Larachez2102 in reply to CoastalLiving]

I have a heart condition so that’s a major scare for me the palpitations. What mg were you taking? Oh the injections were horrible I was on the for around 5 months and 4 days out of 7 I was throwing up, head aches constantly hair loss came around 3 months after I was shedding a lot of hair and I use to have really thick hair. Now it’s very very fine 😢 my joints felt a lot worse the day after the injection. I just don’t think the injection was for me but I’m not sure the tablet form will be much different. I hope it works out for you and your don’t get many side effects xx

[CoastalLiving in reply to Larachez2102]

I am so sorry to hear that. I think perhaps some of us are more sensitive to meds - I react badly on prednisolone but for many on here that seems to do wonders. I really hope you do have better luck with the tablets, I guess you just have to be pushy if the side effects aren't great from the off. I was told by 3 months the side effects are as good as they get.

I think I was on 20mg tablets. Currently only on 15mg injections. Have terrible fatigue and breathlessness but with normal blood tests so am being told nothing they can do. guess we just have to keep advocating for ourselves. Wishing you the best with the tablets. xxx

[Larachez2102 in reply to CoastalLiving]

Oh Iv been on pred for over 4 years now 10mg daily with flare up I go up to 20mg only side effect I seem to have is the horrible moon face. Thank you so much. Have a lovely Xmas xx

[CoastalLiving]

Oh and one other thing - Arthritis Action offer some dietary support to members. They have a dietician you can have a couple of sessions with. Membership is very reasonable - I think it was around £20 for the year.

[Dexter1414 in reply to CoastalLiving]

Thankyou