NRAS
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Methotrexate & Supplements

I’m a bit confused by conflicting advice on whether it’s ok to take supplements with methotrexate.

I’m on 17.5mg injections once a week. And I take Glucosamine, Chondroitin, Cod liver oil, MSM, turmeric and Vitamin D every day. I also take Folic avid (but not on methotrexate day).

My sister who is newly diagnosed has been told by her specialist not to take supplements but mine has said nothing.

Anyone been told anything specifically?

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Hi Jules, take similar to you: omega 3 fish oil, vit d and c as well as 6 x folic. Asked nurse when she was saying watch out for herbal stuff, said they were fine. I'm on mtx. Cld check with them i guess; all seem a bit different in advice.

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I know. Confusing.

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I think that the supplements to avoid are those which boost the immune system as our immune systems are already working overtime causing our joint problems.

Clemmie

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There you are! Was wondering where you'd got to.

No idea about supplements. Sorry.

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I’m here. Reason so quiet is that I’ve had to get on with life. Having to work as much as possible and when I get home I completely crash. X

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hi jules i just take the fish oil vitimans and primrose oil and been on methetrexate 3 years with no problems

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Check up on Primrose Oil.....more than one Rheumy has told me to avoid it..have never investigated so don't know why.

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I was also told to avoid evening primrose oil.

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I'm an old fashioned Old Gal,& nothing passes my lips that hasn't passed my rheumy's scrutiny.

So far after 20 years I take no supplements.....so I must be doing something right! I hope !

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I’ve taken glucosamine for last 15 years because it really helps with my osteo too. Hmm.

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Yes it is thought by some doctors it helps with OA, but it does nothing for RA I'm afraid.

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Me too.

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Sorry - the ‘me too’ was in agreement with having been told to avoid evening primrose.

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Hmm - I’ve been taking EPO for the last 30 years but can’t remember why I started it - possibly for PMS, which is no longer an issue. Now wondering if I should stop it....

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I think a possible reaction with ant-inflammatories. I posted a link.

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I was also told by my oncologist to avoid it plus Black Cohosh.....when I was only on Anastrazol....but it does sound so soothing doesn't it ...... Oil of the Evening Primrose?

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It does. I might use it and just reduce nsaids.

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I will do

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Cod liver oil, vit D, and prob glucosamine/chondrotin are probably not considered as supplements. And folic acid, MSM and turmeric are all available through normal diet so also probably not considered supplements.

I think when rheumies say avoid supplements they are more referring to herbal supplements like St. John's wort, echinacea and evening primrose oil - all of which I was told to avoid.

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That makes sense but my sister was told to not take specifically turmeric, glucosamine, fish oils. It’s so weird because they are scientifucally proven to be anti inflammatory natural remedies. X

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Yes but they probably aren't tested either individually or collectively on each & every Dmard, & the selection of all the drugs RA sufferers are prescribed.

A lot of us have found adding one seemingly effective drug whilst already on a successful drug can send things haywire.

But the if you believe a supplement will help you, it may well do!

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Mine said , not sure that tumeric will help but go ahead if i wanted! :)

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This advice from helix is good x

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Yes and I’ve been taking them for years too. See my reply to helix xx

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Your chemist/ pharmacist will tell you

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Thanks. I checked with them too and they say they’re all great natural supplements. I just don’t get why my sisters Rheumy told her to stop them all. So weird. My specialist is returning my call later. Will see what she says x

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Yes, I checked with my pharmacist, I made a list. She added it to my file on the computer!

She did tell me that for some "herbal" supplements, there is not enough information to safely say and directed me to my doctor.

But the vitamin B's, D's, fish oil were all OK'd

I am starting methotrexate on Friday, scared but so ready to start feeling better. If my fingers could cross, I would cross them!

I am working full time too... It is time for bed almost as soon as I get home. What do you do?

I live in the states and teach second grade. I was teaching kindergarten, but it just got too hard! Thank goodness I have a good boss who let me change grade levels.

Take care of you!

Kim

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Yep I'm registered with ghpc

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My rheumatologist told me not to take any supplements at all whilst they were in process of diagnosing me. I guess because they can scew results.

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Oh. That worries me slightly. Because they never told me to stop them so does that mean my blood tests are all wrong?

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I doubt it Jules. I would guess supplements could mask underlying anaemia and stuff like that.

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Hiya Jules. As you know I'm on MTX, same dose & administration as you. I have both RD & OA but the only things I take which are non medicinal are Omega 3 Fish Oil & Adcal-D3 & folic acid, the last two are both prescribed so I only buy the one. I'm not sure how helpful the ones you're taking are, I don't remember if you have OA but when considering any it's best you have them ok'd by your Rheumy, just so you know that none are contraindicated with any of your meds. It may be you'll save yourself some ill afforded money too!

The one thing I'd consider is changing the Cod Liver Oil to Omega 3 Fish oil?

Has your sister received a diagnosis now then?

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I still recommend you check with your Rheumy because it's such a personal thing, you & your meds & possible interactions but this might be of help just in case you should have to stop taking anything before you have a chance to ask.

reference.medscape.com/drug...

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Yup. She has it. She has it in the knees mostly. But my god, the difference between private health and mine is unbelievable. Within days of diagnosis she was started on methotrexate, had physio, given mindfulness classes, hydrotherapy and has been given a mobility scooter to walk the dog. It’s so polar opposite from my experience. Really hard to see how much help and support she has. I mean it’s great but it makes my experience feel even more isolating. .

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I take Evening Primrose Oil, Omega 3, Vitamin B Complex, Vitamin D, Black Garlic, Black Cohosh and Sage, the last 2 which I am phasing out as they were for menopause symptoms and no longer required.

I have never been told not to take supplements, but having said that, I’ve never been asked if I take any, and I’ve never volunteered the information for fear I will be told to stop them on the basis that if you eat a balanced diet, you don’t need supplements.

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Hmmm. That’s the same as me. I’m not sure I ever had the discussion with my Rheumy. X

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I take Methotrexate (by injection), Sulfasalazine, folic acid. My gp (who is very knowledgeable about RA) said to take an iron supplement too - so I take that with the folic acid on my non mtx days - it has helped my blood count etc

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Hmmmm that’s interesting. I do eat s lot of green dark veggies so might be ok with my iron. I wonder if they even check my blood tests that regularly because I’ve never heard anything from my gp and my Rheumy.

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Hi Jules

I too am on MTX.

I take Omega 3, Vitamin D and Folic Acid. I use to take Turmeric as well. I asked my Rheumatologist about taking the above and he said fine go a head. I was not too exceed 1/4tsp of turmeric per day though. This is the typical quantity in an Indian diet.

I am a food scientist and there's lots of positive research when it comes to Omega 3 and Turmeric.

Joy

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Hi Joy

I would love to know more from your food science knowledge if you can share things relevant to RA? I think food is important but little understood by medics so far in terms of supporting treatment.

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Yes I agree. Xx

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Happy to share info.

I am afraid I do not agree that it is little understood by medics. If there was a solution involving food then we'd all be doing it.

It's boring I know but it's all about having a balanced diet. I'm not going to go on about it as folk on this Forum can be particularly unkind.

So here's what I do:

1 Drink on average 3 pints of water a day

2 Eat a minimum of 5 portions of fruit and veg per day. Aiming for 3 of veg and 2 of fruit

3 Cook from scratch - that way you don't need to worry about the hidden fats and sugars

4 Eat a balanced diet - no faddy diets. Diets come and go but a balanced diet is here to stay

The extras I now do now that I have RA:

1 - take Vit D - otherwise my count would be through the floor

2 - take Omega 3 (I have taken Cod Liver oil since I was a babe in arms) but switched to Omega 3 when I got RA

I did take Turmeric for 1 year but it made no difference.

Of course you must allow yourself treats now and then. I most certainly do!

Joy

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Thanks joy. I make my own capsules of turmeric and it’s about half a teaspoon. It’s regally good for inflammation and find it helps with my osteo too. My surgeon even recommended making a poultice with olive oil after my knee surgery which I thought was very forward thinking for a science man. X

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The poultice is interesting Jules. It is commonly used in Indian medicine. The turmeric is mixed with salt and water and then heated a bit and applied warm. Wrapped and left overnight.

Again an ancient cure.

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Hi Jules,

I too am on MTX. Years ago my chiropractor recommended the Glucosamine & Chondroitin but said to take it for a couple of months then stop for a month, then retake it etc. She said it made it more effective to stop every so often.

Maeve

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Oh that’s interesting. How many months did you stop for? X

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Hi Jules,

I stopped for a month then took them for 2 months then stopped for a month etc. I've been doing that for about ten years at this stage.

Maeve

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My pharmacist told me to take my folic acid with my other vitamins and supplements that I take in the morning. No one has told me not to take folic acid on a methotrexate day.

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Oh.... thats definitely not what I’ve been told. Most people I know with ra agree that they don’t take folic acid on methotrexate day. I would check again with your rheumy. X

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Thank you. I’ll look into that but I won’t take it today as it is the day. :)

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Hi, I was also told to not take supplements unless OKed by the Rheumatologist. I was then put onto high dose Evening primrose oil by breast consultant, for 6 months and had to get agreement of Rh department which seemed to be an area of uncertainty for them. They let me take it but then there were questions as I developed new RA problems. In the end I was allowed to carry on as it is for 6 months and then stop and is a question of balancing other health needs which are also important and affect quality of life with RA treatment. Personally I don’t think the EPO is relevant to my joint issues, I think it is my RA not yet under control.

On turmeric the nurse was dismissive but told me it’s up to me and she would save her money! But she is not sitting there with a joint destroying disease- so I don’t see her perspective in same light as my own 😐

I went to a talk by a nutritionist about RA and will post the advice when I look it out. Good omega fats are very important. I second the remark about changing cod liver oil to a good quality omega 3 oil (general fish not liver) as I was told this by a nutritionist when pregnant.

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Yes... I think I just went for the cheaper option and got cod oil. Will change it. Turmeric is a godsend I don’t care what anyone says. It’s so helped my osteo too. X

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How do you take the tumeric?

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It will depend on the supplement. As a general rule, I would say that supplements that people take to boost their immune system aren't the best, as they can interfere with the medication, because it works by suppressing the immune system. A lot of what you take is commonly taken by people with RA. You might find it helpful to look these up in the ARUK report on complementary medicines. It looks at the levels of evidence for them helping people with RA as well as the safety of them:

arthritisresearchuk.org/art...

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My Rheumy told me to take more fish oil then I was already taking.....everyone has different ideas

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Hi Jules,

I was told not to take other vitamins or St Johns Worts apart from what I'm given from hospital or gp as they can interfere with other meds.

Maybe it slipped specialist mind to ask, your sister should ask in case meds don't work - is it because they are not suited or that she's taken extra supplements

Best wishes

Pamela xx

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