supplements : I’ve been on Methatrexate long term and... - NRAS

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A234 profile image
A234
55 Replies

I’ve been on Methatrexate long term and tolerating it well thankfully, I’ve just recently started taking a multivitamin/mineral and that’s the only other thing I take (apart from folic acid ) I’m now curious to know what others who are on Methatrexate take and is there anything that’s best avoided?

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A234 profile image
A234
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55 Replies
AgedCrone profile image
AgedCrone

You shouldn’t take any supplements when you’re on prescription drugs until you run them past your rheumy nurse it’s surprising what can cause chaos!

A234 profile image
A234 in reply toAgedCrone

Thank you. I will mention it to them again.

MJSlide1958 profile image
MJSlide1958 in reply toAgedCrone

oh! My daughter takes Vitamin D3 because of always being low and now since supplementing D3 she has a normal reading. She also takes Bare Biology Omega 3 pure fish capsules about 4 times a week, too expensive. Is this dangerous with Methotexate tablets? She never takes anything on day of MTX.

AgedCrone profile image
AgedCrone in reply toMJSlide1958

I don’t know if that is dangerous,,,,……which is why I would never take any supplements whilst on any prescriptions drugs….until I had cleared it with my doctor or rheumy nurse.

It’s not just a thought,,,,some supplements can increase the effect of a prescription drug…others can decrease it..,..of course both are undesirable.

Read all the responses here…most seem to agree….ask before you take anything!

MJSlide1958 profile image
MJSlide1958 in reply toAgedCrone

I think each individual Rheumatologist have different views on supplements. Take for instance Vit D3 is so important, if low Vit D readings, I was told that you could get seriously ill. When my daughter was diagnosed with severe RA before given meds they found her Vit D blooding reading to be 17. Since supplementing her reading is now 60. She takes a small natural dose of 800mg a day apart from MTX, just in case it interacts on the day???

AgedCrone profile image
AgedCrone in reply toMJSlide1958

No…..it is always necessary to ask your doctor if it’s OK to ADD Vitamins or any other supplement ….to what you are prescribed.

If I understand your reply correctly, your daughter was not receiving prescription drugs….& when she was diagnosed & needed Vit D, that was duly prescribed by her doctor?

So now if she feels she wants to add anything she must ask her doctor……not just add anything without his say so…..because as has been said…even Vitamins can really MESS UP the action of prescription drugs. ..& not just on the day…

The “no supplements without asking” applies to adding to what you are already taking with prescription drugs….does that make it clearer?

MJSlide1958 profile image
MJSlide1958 in reply toAgedCrone

oh my gosh thank you, clear! But there are many many people on this forum who take lots of different things: Supplements/Herbal teas and foods. Even Black tea we've read on MTX leaflet not to take! Also simple Probiotic yogurts oh and Grapefruit!

What do we do? But I will follow what you state above.

Thanks

AgedCrone profile image
AgedCrone in reply toMJSlide1958

Yes & many people live to regret it. It only takes a minute to leave a message at your GP saying can I take XYZ with my prescription drugs you don’t even need to speak to anybody.

Hope your daughter is doing well now.

MJSlide1958 profile image
MJSlide1958 in reply toAgedCrone

Will do, thank you very much.

Chris_O profile image
Chris_O

Hi. I’ve been hydrochloroquinine since I started with RA and also started MTX and folic acid about 2 years after this. I was on naproxen as well, but had a heart attack about 2 years ago and the naproxen was stopped ( bad for cardiac health ). I also take Zapain as required. I think that my RA specialist is unusual in his drug treatment of RA.

Runrig01 profile image
Runrig01

As Agedcrone says, you really need to run them by your rheumatologist. Lots of supplements share the same enzyme to merabolise, it can result in inhibiting or enhancing the effect of your medications. One example is things like turmeric or Omega 3, which havd an anti inflammatory effect, can increase the risk of bleeding, so taking alongside NSAIDs, which an potentially cause bleeds can be dangerous. The same risk applies with warfarin, aspirin or clopidogrel. If it enhances the drug, you can end up with toxic levels, if it inhibits you can end up the drug not reaching therapeutic levels. Although supplements can be purchased over the counter they still have interactions to be considered. The other supplement to avoid, is things like echinacea, which boost your immune system, which does the opposite of what your meds are trying to do.

A234 profile image
A234 in reply toRunrig01

Thank you, I don’t take anything other than Methotrexate + folic acid for the RA. I think I will stop the multivitamins until I speak to the RA nurse. It’s interesting what you said about Turmeric, I didn’t know that, I’ve never taken it but I know a few people who do.

Runrig01 profile image
Runrig01 in reply toA234

I unfortunately leaned the hard way. I was at a food event, where they were selling turmeric that’s only available in Australia on prescription. I was assured that although you couldn’t take it with warfarin, which I knew, clopidogrel was fine. I had a wonderful response with it reducing pains considerably, but unfortunately within 2 weeks I was covered In bruises. It has enhanced the effect of the drug reaching near toxic levels.

I also have a friend who used glucosamine for her OA, it can also enhance bleeding. She’s not sure what it clashed with, but suffered a large rectal bleed. I had a rectal bleed myself recently, and found myself thinking how much worse it could’ve been, if I was taking that at the time. She had offered me them previously, but I declined due to the clopidogrel. So yes, anyone on meds needs to research supplements thoroughly, and speak with their health professionals. I’m sure the multivitamin will be fine as they’re just providing the equivalent amount you would get from your meals. It’s more the single vitamin or supplement in high amounts that are a concern. 🤗

MJSlide1958 profile image
MJSlide1958 in reply toRunrig01

oh no my daughter has to take Vit D3 because without taking Vit D3 gel capsules her reading was 17 and is now 60. I buy her Bare Biology Omega 3 pure capsules, she takes 4 times a week because they are expensive. Should she ask her Rheumy again?

Runrig01 profile image
Runrig01 in reply toMJSlide1958

So if she hasn’t informed rheumatologist about Onefa 3, and she’s on meds, then yes. It interacts with over 100 meds, including nsaids, antiplatelets which both increase risk of bleeding. But there are many other effects too.

MJSlide1958 profile image
MJSlide1958 in reply toRunrig01

Do you know what her Rheumatologist said, and I clearly remember this. He said that Omega 3 fish oils (not fish liver oil) complement whilst taking the meds! That is why I found the most pure omega 3 fish oil which is the Bare Biology brand! I really need to speak with Rheumy myself. Clearly you cannot take any fish oils before an Op because of blood thinning. But as for normal, Omega 3 fish are advertised so much in our food s like fishfingers. Does this mean whilst on meds you cannot each tinned or fresh mackeral, salmon, sardines etc........ and all those foods with added Omega 3 seed type! It is very confusing. And as for Vit C naturally occurring does it affect the Immune system for people who are given Immune supp drugs? Gosh so hard to know....I can't afford to take pure fish oils therefore I just try to eat as much Omega 3 foods as possible. I am confused. Does anyone out there on these meds eat natural supermarket foods that contain fish oil, turmeric, ginger etc. And orange juice in the morning, especially the freshly squeezed Vit C juices. Oh and also the probiotic yogurts which I heard are very bad to eat whilst on biologics? I really don't know what is the correct way! Do you happen to know please ?

Runrig01 profile image
Runrig01 in reply toMJSlide1958

If her rheumatologist is happy, then that’s fine. He knows her medical history, meds etc and can do a risk assessment. I can’t state what she should do, I’m just highlighting that over the counter supplements aren’t necessarily safe for those on medications. The amount of Omega 3 , or turmeric and ginger in foods is negligible and will cause no harm. It’s high strength supplements that could cause issues. Eating fewer sh fingers is also fine.

Opinions are divided on probiotics, and some rheumatologists will say yes others say No. My own rheumatologist says No, as some of the microbes in the probiotic could cause infection in immunosuppressed patients. Others may feel there is sufficient evidence to allow them. You can research most of this yourself, by typing the supplement and interactions into your search bar, and you’ll find listings 🤗

MJSlide1958 profile image
MJSlide1958 in reply toRunrig01

Thank you

MJSlide1958 profile image
MJSlide1958 in reply toRunrig01

Good Morning Runrig01

Please may I have your opinion. My 32 year old daughter with RA has her planned laporoscopy cystecomy removal of her bilateral ovarian dermoid cysts on 16 May (midday). Some professionals are saying come off of her weekly 50mg enbrel biologic prefilled two weeks before Op and Methotrexate tablets 15mg weekly one week before Op? And go back on Enbrel and MTX two weeks after Op (certainly when healed). Have you had experience of having an op and coming off of meds? Grateful for your opinion. Thanks

Runrig01 profile image
Runrig01 in reply toMJSlide1958

Yes, I had foot surgery in February. I had to stop my benepali, which is the same as Enbrel, 2 weeks before and MTX the week before. Unfortunately I was off mine for 9-10 weeks due to issues with the wound healing. That is standard practice when having surgery. If you’ve concerns around it, you can discuss with her rheumatology team. I’d only been back on mine for 2 weeks, when bloods showed infection, suspected chronic sinusitis, so had to stop for 2 weeks of antibiotics. Have just restarted, but will have to hold off my MTX for 2 weeks soon, as recommended for covid vaccines. I’m off more than on these days

MJSlide1958 profile image
MJSlide1958 in reply toRunrig01

Thank you so much. I hope you get well soon. You must have been in pain and inflammation markers must have gone up? How did you control it? with Paracetamol or anti inflammatories?

Runrig01 profile image
Runrig01 in reply toMJSlide1958

Unfortunately I’m not allowed antiinflammatories, since I had a severe stroke at 52. I use a butec pain patch and tramadol if needed. I also use baclofen for muscle spasms. It was mainly the night time pain I struggled with, day time was not so bad. The operation caused very little pain

MJSlide1958 profile image
MJSlide1958 in reply toRunrig01

Thank you. I am so sorry to know you had a stroke at 52. And not to have anti inflamm therefore inflammation must be high?? Glad you got through pain for all that time, it must have been months without your biologic and MTX! I wish you better and full recovery very soon. I did not think that anyone could be off of biologic and dmard for so long without going into a terrible flare, I have lots more to learn. I keep worrying about my daughter's inflammation going up before Op and all she can take is paracetamol. She will be off of meds for about 4 weeks in total, and that's if Op goes well for quick healing??

A234 profile image
A234

oh that sounds horrendous . To be honest I’ve always been very wary of taking supplements but I did think that the vitamins would be okay, I will most definitely checking with the rheumy team . Thank you for your reply.

Spanelmad profile image
Spanelmad

The only supplement I take with the RA drugs is vitamin D

Seabird1 profile image
Seabird1

Hi A234

I first went to my Rheumatologist with so many supplements that every well meaning person had suggested. He pushed them all aside except the multivitamin and the omega 3 and suggested that would save my pocket and my liver. I was told to take extra B12 due to the methotrexate as well as the folic acid. In the last few years as I am over 65 and female he has told me to take vitamin D and calcium 600mg.

It's good to ask them for advice on which to take. Good luck.

MJSlide1958 profile image
MJSlide1958 in reply toSeabird1

folic acid is a supplement too, I believe a Vit B supplement and all people on MTX are given to take 6 days a week apart from MTX day

Seabird1 profile image
Seabird1 in reply toMJSlide1958

Yes thanks, I do take them 6 days and yes they are supplements . What I meant was initially I was taking some odd ones, in desperation of getting on top of my pain waiting to see a rheumatologist such as celery and juniper, green lipped mussel oil. That's why he said he was saving me money and my liver processing them all. It is a fine line. At the time the Green lipped mussel was a trend and very expensive. First off in the early days I was vulnerable to advice from well meaning people, not necessarily health experts.

I read another post of yours about cooking with turmeric,that is different to a potent capsule. Cooking with it or having it as a tea is different and less. Turmeric capsules which are a higher dose I have read can interfere with anti inflammatories. I take anti inflammatories daily but cook my rice with turmeric and it's a nice spice. Used like that is fine I would have thought.

MJSlide1958 profile image
MJSlide1958 in reply toSeabird1

thanks, I do the same, only cook with turmeric , tasty. I also cook using ginger in curries in particular, tasty too.

BoneyC profile image
BoneyC

I have bought supplements in the past but came to the conclusion they don't make any noticeable difference to my health and can cost a lot of money. I've had RA a lifetime!

I am prescribed Calcichew with Vit D and Folic Acid but nowadays try my best to eat as healthy a diet as I can manage and stick to a normal BMI. It would be great to buy salmon 2-3 times a week, but it's so expensive these days. Thank goodness for Aldi & Lidl with cheaper fresh veg, salad & fruit!

julie1908 profile image
julie1908

This post and replies is so informative, thank you! I myself have been looking into taking supplements. But after reading these replies about turmeric and the others i think i will just stick with my calci d tablets that I take daily.

MJSlide1958 profile image
MJSlide1958 in reply tojulie1908

I only cook with organic turmeric powder from Waitrose about 3 times a week. I wonder if it is ok?

Deeb1764 profile image
Deeb1764 in reply toMJSlide1958

I took turmeric with black pepper when on MTX and when talking to the nurse I said had this cough for 4 months. We went thro medication and supplements and it was the black pepper in it that was causing it. So from then on I would update them by email on meds or checked with my GP when at a consult before I bought.

This happened at start of meds for RA. Learnt my lesson.

MJSlide1958 profile image
MJSlide1958 in reply toDeeb1764

I am glad you got it sorted, yes I agree always check with Rheumatology Team

AgedCrone profile image
AgedCrone in reply tojulie1908

The Bottom Line really is…If you need supplements…it will show up in your blood tests, so your rheumatologist will tell you if you need them,& will prescribe them for you.

No need to waste your & rheumy’s time making an appointment to ask.

julie1908 profile image
julie1908 in reply toAgedCrone

I can assure you i have never wasted my rheumatologist’s time if anything i am the complete opposite. Like at the moment i have been in so much pain and hardly able to walk for about 6 weeks now and rather than get straight on the phone to them i am trying to hold out until my appointment in May.

I just stated how i found this post interesting.

AgedCrone profile image
AgedCrone in reply tojulie1908

My reply was directed to MSJ who I am sure knows what I meant. I wasn’t accusing anyone of wasting time..just assuring that it is quite OK just to drop a note asking about a particular supplement. ..because it really isn’t something to take a chance on.

KittyJ profile image
KittyJ

I take vitamin D which was prescribed by my rheumy. Your rheumy will tell you if you need to take any supplements so I would ask them. What someone here takes might not be suitable for you or you may not need it.

CagneysMum profile image
CagneysMum

Hi

I take vitamin D, B12 and a marine calcium supplement (the latter to help combat hair loss cause by methotrexate) … but all approved by my rheumy before starting 👍

AgedCrone profile image
AgedCrone in reply toCagneysMum

It’s common sense really isn’t it? I often wonder if people who seem to fail on so many Dmards at the beginning of their RA journey are quite innocently taking some sort of “tonic” they have taken all their life…but have never mentioned it to their rheumy?

I was diagnosed so long ago I don’t remember ….but on diagnosis today….I wonder…..do rheumatologists ask their patients if they are taking any OTC meds?

CagneysMum profile image
CagneysMum in reply toAgedCrone

You’re so right but I’ve never been asked the question .... I just took it upon myself to check it out with them !

marti profile image
marti

As others have advised always run in past your rheumy team first - I'm on methotrexate and I only take folic acid, omega 3 and Vitamin D which have all been approved for me .

MJSlide1958 profile image
MJSlide1958 in reply tomarti

which brand Omega 3 are you taking please?

marti profile image
marti in reply toMJSlide1958

I take zipvit 1000mg omega 3 - I have took stronger doses but the 1000mg one a day seems to work best for me

MJSlide1958 profile image
MJSlide1958 in reply tomarti

Gosh! what meds do you take?

A234 profile image
A234

thank you all for your replies, having had RA for 15yrs, I am well aware of the risks of complications and keeping our rheumy teams in the loop, foolishly perhaps, I assumed that a short spell on vitamins would be okay.

I will ask about the vitamins if and when I next see my team( getting to see or even speak to a member of rheumatology in NHS Highland is like pulling teeth 🙄)

greynot profile image
greynot

At my first ever Rheumy appointment ( when I received my diagnosis, and was started on appropriate meds regime to squash it) I was told not to take any supplement without running it past the rheumy team first. She also specifically said no multivitamins and no echinacea.

Ritaritis profile image
Ritaritis

I sometimes use alternative medicine I drink non alcohilic ginger wine and add ginger to food. Also use turmeric. Have been advised 'if it works for and helps you fine. It's your money.🐈🐈

MJSlide1958 profile image
MJSlide1958 in reply toRitaritis

Did Rheumy say ok to ginger and turmeric?

AgedCrone profile image
AgedCrone

As has been stated many times before no supplements should ever be taken unless any doctors prescribing any drugs who all have full knowledge of every drug you are prescribed .says OK,

The most unlikely vitamin or herb can either exaggerate or lessen the affect of prescription drugs….so please ask your doctor/doctors before you decide to take anything !

ABwn profile image
ABwn

I'm on MTX, hydroxychlorequine, omeprazole, folic acid and starting on risedronate sodium.

Karenmcfc profile image
Karenmcfc in reply toABwn

Oh wow, I was under the impression I could not take Omeprazole whilst on MTX 🤔

ABwn profile image
ABwn in reply toKarenmcfc

It was my Rheumatoid arthritis dept that put me on it. Will look into it. Thanks.

Happy5 profile image
Happy5

Concur with the others my RA specialist nurse explained what is ok or not when I asked

Whezziewhoozie profile image
Whezziewhoozie

hi,

So obviously you need to check with doctors

But I take

Vitamin D and B12. Help with tiredness

Iron and Folic acid. I am veggie

Magnesium. Helps with sleep

Omega 3. Joint health

Glucosamine. Joint health again but found it helps with stiffness

I have also tried turmeric and loads of others over the years but this is what helps. I ask them like once a year to check my b12 levels etc

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