Methotrexate and supplements : Does anybody take... - NRAS

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Methotrexate and supplements

Mish-da profile image
56 Replies

Does anybody take additional vitamins other than folic acid alongside Methotrexate? I currently take selenium ace d to help with the immune system.

I’ve done a google search but can’t find anything to say you shouldn’t.

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Mish-da profile image
Mish-da
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56 Replies
nomoreheels profile image
nomoreheels

Hiya Mish-da. The jury seems to be out on selenium being beneficial for established RD. Trials (v placebo) have proven at recommended low dose (80-200 mcg) it doesn't help pain, morning stiffness, disease activity or number of swollen joints. Personally I wouldn't bother with anything that your Rheumy doesn't recommend. So unless yours has you'd be wise to save your money, it's the cost of a prescription or even more so to my mind it would be better spent on your meds.

The only bought supplement my Rheumy thinks is necessary for me is Omega 3 fish oil. I do have others but they're prescribed, like you folic acid plus Adcal-D3. You could do as I do & be checked by your GP or Rheumy team for anything you think you may be deficient in or aren't taking in enough through diet?

Mmrr profile image
Mmrr

Maybe not quite what you are asking , but the only supplement I take is floradix, which is a gentle herbal and fruit iron, Vit B complex and Vit C supplement. My haemoglobin was borderline, my GP was not particularly interested so I started supplementing myself as I did not want anaemia to be added to my bag of health problems. It has worked and my haemoglobin now sits just above 12.

Dobcross1 profile image
Dobcross1

Hi I take vits c,d,b, omega 3, magnesium, zinc, quercetin and collagen powder in addition to folic acid. I have to say I've been on them months and they don't seem to be making one bit of difference except to my purse!!😂

AgedCrone profile image
AgedCrone in reply toDobcross1

Speak to your doctor...if he feels you need supplements he will tell you.

As nmh says..,save your money for something you enjoy.

Dobcross1 profile image
Dobcross1 in reply toAgedCrone

Yep that's what I'm thinking now too! Thanks for your reply

AgedCrone profile image
AgedCrone in reply toDobcross1

Some lovely summer clothes in the shops...once it stops snowing go window shopping to see what you will buy!

Simba1992 profile image
Simba1992 in reply toDobcross1

The sad thing being that rheumies usually know very little about diets or supplements:( You need another specialist for this.

NeonkittyUK profile image
NeonkittyUK in reply toAgedCrone

They should, but sadly some doctors don't tell you due to time constraint or are not interested enough, as Mmrr said. The first rheumy nurse I ever saw told me I had a very healthy diet so no for need anything else adding in except iron tablets. My Haemoobin was 9. She wanted >10.5 and we got it to 12.5. It's a bit higher these days right where it should be. You can only really see a nutritionist/dietician at my hospital if you are obese or diabetic. Iron was offered by my rheumy nurse when RA was running riot at the start. I refused as they upset my system badly and I was just borderline anaemia and I managed to keep it from slipping into the under range by eating many iron rich foods. In fact my iron levels became quite good fairly fast. The same nurse was always saying how breakfast cereals were giving people an excess of vitamins and there were too many added in them! I'm very specific about cereals and prefer the plainest of them with good quality oatmeal/porridge or mueslis with no added sugars. I used to tease her and ask if she'd been extracting the vitamins from her Coco Pops! 😁. She said she wished she could! It was my husband's dermatologist who told me a few years back to ask my GP about vitamin D and getting a test. I didn't want Cocalciferol so took my own finding to the GP of the same dosage they wanted me to take in the form of D3 drops which she was happy about. My levels were indeed very low. Now very decent. Our GPs are so pushed lately and since last year it's been getting worse. It's 3 weeks on average to get an appointment and you end up going as a walk-in-access clinic patient for when you need to ask for a referral somewhere or tweak your prescriptions etc as you don't want to wait 3-4 weeks. As NMN says too, I would always ask my rheumy and not the GP re supplements and vitamins.

AgedCrone profile image
AgedCrone in reply toNeonkittyUK

When we have an autoimmune disease we have to be proactive & if we are worried about diet or supplements we should ask our Rheumy team their advice.

As you say they don’t have time to cover every eventuality, so we have to decide how much advice we need...& choose the moment to ask.

But basically a sensible diet gives us all the nutrition we need, & our blood tests show our doctors if anything needs adding.

Apart from Vit D in the winter I’m assured I don’t need anything added....hence saving quite a few pounds when I see the price of

Vits & Supplements!

NeonkittyUK profile image
NeonkittyUK in reply toAgedCrone

Vit D 3 drops are my only supplement I have to buy too. It can be as you rightly say very expensive to buy a lot of supplements. I do understand though that some people have great benefits from taking certain vitamins and supplements. The less tablets to swallow the better! 😁 x

I've been prescribed Adcal D3 as I have Osteoporosis. As RA puts you at risk of OP, perhaps you could take a vitamin D supplement. I also take a fish oil supplement which is beneficial for those with RA. I think you are safe with Selenium, and if the D is vit D you should be OK with that too. Have you asked your Rheumy or Rheumy nurse?

Mish-da profile image
Mish-da in reply to

She’s due to contact me soon so I shall ask. I know echinacea is a no no!

Mish-da profile image
Mish-da

Ok thanks everyone. I was hoping they would help with my immune system as it’s very poor at the moment and the Methotrexate which I only started 6 weeks ago isn’t helping.

I’ll use up what I have then go holibobs shopping! 😁

in reply toMish-da

DMARDS such as MTX do lower your immune system. That's how the keep your RA under control

nomoreheels profile image
nomoreheels in reply toMish-da

The thing is selenium enhances (or as you say help) the immune system, not boost exactly but we take DMARDs & biologics to dampen down our overactive immune system. This is why it's not considered helpful for the symptoms we take our meds for. Your immune system is poor due to the condition I'm afraid so you don't want to make it poorer, it's often misunderstood so don't worry. I think you'd be better shopping for your hols as you say. 😎

You're only 6 weeks into MTX, your Rheumy should have explained that DMARDs as a group aren't fast acting, they build up over 12 weeks or so, though some notice subtle improvements around any time now, hopefully you'll be one. It depends in which way it's not helping but if it's not yet dampening down your inflammation you could see if your GP is happy to prescribe an NSAID or short course of steroids for you.

AgedCrone profile image
AgedCrone in reply tonomoreheels

I honestly believe how robust your general health is - aside from RA.....has a bearing on how Dmards affect you. If before diagnosis you had many other health problems that stress your immune system...that might mean Dmards make things worse?

I took Mtx for 7 years & don’t remember even having a cold....certainly never needed antibiotics.

I now take Vit D throughout the Winter months, & my Rhematologist agrees that is all I need to take. I have been a bit fearful this year as I couldn't have the FLUAD Influenza vaccine due to lack of information re it’s reaction with Rituximab....but so far I have escaped.

Maybe taking approved supplement help some people, but I’d rather buy myself a nice bunch of flowers to cheer myself up.

Each to his/her own.

Uga35570 profile image
Uga35570 in reply toMish-da

Hi mish-da I too have methotrexate and folic acid but was told by my rheumy not to take any supplements. Also from my experience 6 weeks is not long enough to have much effect yet . I know its hard maybe just have to be patient difficult I know good luck.

tootsiebootsie profile image
tootsiebootsie in reply toMish-da

For me, I believe Turmeric works. I take 2 capsules a day and more if needed. I also take 5 methotrexate once a week. Plus Omega 3, D3 2000, folic acid. so far it seems to be working for me. Hope you feel better. prayers

Downtime profile image
Downtime

I’ve never discussed it with my Rheumy but I take omega 3, vitamin D in the winter and nicotinamide ( vit B 3) to help protect my skin as I get lots of non melanoma skin cancers. Also take magnesium if I start getting a lot of cramps.

HappykindaGal profile image
HappykindaGal

No idea if they work or not and now don’t want to stop In case they are helping 😂. I take turmeric and black pepper, Boswellia, omega 3, coq10, vitamin D and a pro biotic tablet.

NeonkittyUK profile image
NeonkittyUK in reply toHappykindaGal

My first rheumy nurse freaked out big time when I told her I was taking Boswelia tablets after I had been first diagnosed and prescribed Sulphasalazine. She said one or the other so I stopped the Boswellia even though it quickly had a good effect and taken my ESR to 8 from very high. She said it is a very powerful plant sterol. My hospital rheumy nurses always want to know about any herbal and other supplements. x

HappykindaGal profile image
HappykindaGal in reply toNeonkittyUK

I take Sulfa too and the nurse didn't say a thing. I might check again!

Cheylann profile image
Cheylann in reply toNeonkittyUK

Very interested to know why u would stop something that was having such a good affect and so quickly? Doesn't make sense to me.

nomoreheels profile image
nomoreheels in reply toCheylann

I would think because the two aren't recommended to be taken together the obvious choice when being otherwise treated extensively with 'western' meds, ie being seen by Rheumatology, is to choose the med prescribed. If under an Ayurvedic or holistic doctor the choice would be boswellia. We just have to appreciate that sometimes two forms of treatment don't gel. We know boswellia may boost the immune system & in doing so can reduce the effect of our meds, the usual reason for being advised not to take it. It can also inhibit the enzymes in the liver which RD meds are metabolised by (DMARDs & NSAIDs) resulting in increased side effects at doses useful for RD. This is particularly important to bear in mind as the recommended dose is higher than that recommended for OA. It would perhaps make sense if no meds are being taken for OA (NSAIDs specifically) & no other 'western' meds that boswellia may interfere with it might be worth a try?

Cheylann profile image
Cheylann in reply tonomoreheels

Guess I would stick with the meds that work whether eastern or western doesn't really matter. These rheumatologusts aren't always right and one needs to listen to your body. My view.

nomoreheels profile image
nomoreheels in reply toCheylann

Of course. Although I'm not sure I'd be putting all my faith in alternatives. I'd worry if I needed an op, more so heart surgery. Hundreds of commonly used 'herbs' contain pyrrolizidine alkaloids which when taken regularly over time can cause DILI.

Cheylann profile image
Cheylann in reply tonomoreheels

And wonder what long term side affects the regular meds cause?

nomoreheels profile image
nomoreheels in reply toCheylann

None of us know as it's so dependent on existing health of the person/organs but I suppose because I trust in the medical side more than alternative that steers me toward it. We each have decisions to make in our lives & as long as they're informed & from appropriately qualified persons we have to trust our choices to be correct for us. Maybe I've been fortunate.

vonniesims profile image
vonniesims

Vit D . My GP thinks everyone should be on it in the winter.

NeonkittyUK profile image
NeonkittyUK in reply tovonniesims

Mine too, she says we are all Vit D deficient in the UK. Maybe last summer helped us all up our levels!

Simba1992 profile image
Simba1992 in reply tovonniesims

And everyone on RA meds all year around.

ckno22 profile image
ckno22

I take vitamin D and B12 because I only eat plant based food now.

Fruitandnutcase profile image
Fruitandnutcase

I take hydroxychloroquine not methotrexate but I supplement with vitamin D+K2 combination - my physiotherapist said it’s vitamin D we need for strong bones and vitamin K2 helps its absorption or something.

I have always taken 1000mcg vitamin C - my pharmacist advised vitamin C years ago when I was taking an anti thyroid drug and my dentist recommended it after I had a tooth out so I have just always taken it until recently when I stopped both a few weeks ago and boy do I regret it.

Normally I’m really healthy but since stopping I’ve been ill with a cold / bug of some sort when I can’t remember the last time I had as much as a sniffle - so I started both again this morning.

I’m afraid I don’t care what anyone says about them being a waste of money, I suddenly realised I’ve felt terrible since I stopped my vitamins C , D+K2. Oh and I sometimes take B12 but I test to check my levels before I do that - I only take it if I’m low within the range.

Cheylann profile image
Cheylann

I take vitamin D3 and milk thistle as well as folic acid

Mish-da profile image
Mish-da in reply toCheylann

I forgot about that yes I also take milk thistle when I’ve had the odd glass of wine! Do you take it daily Cheylann?

Cheylann profile image
Cheylann in reply toMish-da

Yes take it with my breakfast and have noticed that my joints etc feel lighter. I also swear that it helped get rid of my gall bladder sludge which was caused by stomach surgery. The surgeon said it would probably turn into gallstones however at my latest scan it is gone. Milk thistle??

Mish-da profile image
Mish-da in reply toCheylann

Possibly.. who knows. I’m hoping it keeps my LFT’s low enabling an extra alcoholic beverage at the weekends! 😁

Mish-da profile image
Mish-da

I don’t have RA but GPA vasculitis (Granulomatosis with polyangiitis). I find this forum useful when discussing medication. My immune system was already compromised prior to starting the treatment. Lots of infections over past couple of years and episodes of shingles within a few months 😖. As the MTX also affects the immune system wasn’t sure whether to continue with my supplements or not. I think I’ll do what many of you have advised and speak with my rheumy nurse, although they are a nightmare to get hold of!

Thanks everyone for your responses 😉

in reply toMish-da

Mish-da, are you also a member of the Vasculitis group on here?

Mish-da profile image
Mish-da in reply to

Yes I am 😏

in reply toMish-da

I also have Vasculitis but not many members have Rheumatoid Vasculitis, so I left, as it wasn't much help.

Mish-da profile image
Mish-da in reply to

I don’t find many people respond on there find this forum much more helpful particularly when it comes to meds. Although would be nice to chat to people with similar diagnosis... still getting my head around it.

in reply toMish-da

Ditto me 🙄

Joy_1 profile image
Joy_1

I take vitamin D but then I have to otherwise my count would be rock bottom. I also take Omega 3. Tonnes of research pointing to it's benefits. I cleared it with Rheumatologist before taking it though. And he said go ahead as lots of positive research.

Whatever you take you really should speak to your Consultant before you start to avoid interactions with your meds.

Mish-da profile image
Mish-da in reply toJoy_1

Will do may also get my Vit D checked as I’m also lactose intolerant

pd118 profile image
pd118

calcium / vit d

in reply topd118

I have those on prescription as I have Osteoporosis.

BonnieT profile image
BonnieT

I take folic acid along with Biotin. calcium with D. D, B12, and (heavy duty) C.

RADOONE profile image
RADOONE

Yes take folic acid xx

Cameraboy profile image
Cameraboy

I had a damn good Pharmacist [before he returned to Poland] and I asked him about all the supplements etc. He said "stick to your prescribed meds and forget all about the other non-prescription items on the market. He told me to keep my money in my pocket.

pd118 profile image
pd118

I take folic Monday Methotrex Thursday

Angels54 profile image
Angels54

Hi I take 1 iron tablet daily , sometimesI might take 3 in a week , Vit c tablet , bio yogurt, I don’t enjoy food as much.

Hello. I take Vitamin B12 daily orally, it really helps with the fatigue. i can tell the difference. I also have a multi vitamin and the folic acid. It was a pharmacist who told me to take the b12 as he said methotrexate can deplete it.

Mish-da profile image
Mish-da in reply to

Luckily I have B12 injections every 3 months!

Simba1992 profile image
Simba1992

The funny thing is that rheumies do not give you information on how mtx affects your body and how you can most effectively minimize side effects. GI problems, fatigue, nausea, mouth ulcers being the most common. Mtx raises homocystine levels as well as oxidative stress. Folic acid helps to lower homocystine but on top of this you need B6 and B12 and normal thyroid production.Very seldom patients are told that vit. A supplementation is best for mouth ulcers or that Turmeric has a protective effect on liver when taking mtx.

"Homocysteine is a by-product of methionine metabolism. The amino acid methionine is supposed to be converted to homocysteine and then into cysteine. However, this conversion requires an abundance of three key nutrients: folic acid, B6, and B12 – as well as adequate thyroid. Without those factors, homocysteine levels rise, predispose one to heart disease, cause inflammation, and accelerate the aging process."

Tiverland profile image
Tiverland

Check with your pharmacist or RA nurse first

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