what vitamins do you all take? Do you think im right ... - NRAS

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what vitamins do you all take? Do you think im right in supporting my immune system or not as the immune system attacks our body?

bexlt17 profile image
11 Replies

hi i take a vit Bcalled Busy B (for fatigue) from Holland and Barrett i take 2 as with a immune system disease you need a very high dose of B because it is water soluble, i also take vit D 500% RDA (for healthy bones and immune system) i take one and i take Echinacea and Goldenseal it is a herb (for a healthy immune system). Do you think im right in supporting my immune system or not as the immune system attacks our body?

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11 Replies
helixhelix profile image
helixhelix

There are a lot of different opinions about supplements, and to me there's a big differences between vitamins that you might need to top up and other herbal extras. So I do take Vit D in the winter. Some of my caution is because I prefer to spend my money on good food, than more pills, the rest is that I'm v sceptical about whether some of the supplements do anything.

Anyway, I think it's best to check with your rheumy about any extras you want to take. I've been told very firmly not to take any herbal supplements that claim to boost the immune system, and especially not to take Echinacea. Our problem is that we have over active immune systems so many of the drugs are designed to calm it down. I don't know whether there's a more specific interaction between it and the RA drugs, as I didn't ask.

Pollyx

in reply tohelixhelix

Ah .... so best not to get the immune system over-excited! (See my reply below.) I would not have written the first paragraph if I'd seen your reply first, Polly, as you've had advice on this. Sorry bexit!

I suppose just because the immune system is overactive in RA, that's not to say that depriving it of good stuff will somehow calm it down! On the contrary, if you think of it as malfunctioning rather than simply overactive then perhaps vitamins etc. can help regulate it.

However, this is a very complex area & I'd assume that the main thing to do is to check out the supplements you are taking with your GP or at least with the Rheumy once you get to see him or her. Am I right in thinking that you are not on any conventional medication yet? When & if you are then you will definitely need to check out that your supplements are compatible with your prescription drugs. I've heard that sometimes the most innocuous seeming supplements can actually clash with certain drugs.

Meanwhile, I for one would be interested in whether you would especially recommend any of those supplements.

Christina xx

earthwitch profile image
earthwitch

I've been warned against echinacea and other "immune system boosters", but things like vitamins and minerals would probably be OK. However, I am of the mind that actually we don't need as many supplements (if any) as a lot of folk would suggest if you have a healthy diet, and most of what is taken as supplements ends up going down the toilet anyway.

Having said that, I do take a multivitamin, multi-B or vitamin C supplement sometimes when I'm feeling a bit run down, and things like fish oils have been shown to help at least some people with RA. I'd say there is more evidence for fish oils and glucosamine than anything else.

lifebeginstoday profile image
lifebeginstoday

I would def suggest you speak with your Rheumatologist BEFORE taking any supplements, vits or immune boosters such as Echinacea. The latter builds up and boosts your immune system even more and it caused me to have a terrible flare up for 2 months (so far) I've been through a really awful time since started taking highest rda Echinacea which was recommended to me by a friend as she said "I only need to boost my immune system and it will start to regulate itself and normalise". Took it for a week or so THEN I got 3 nasty infections together - stomach, acute sinusitis and renal infection - ended up in hosp and 2 mths on I'm still quite poorly. The pain in my whole body was unbearable and I still have a double duvet folded + a single duvet underneath me (on top of mattress/sofa) as pain is awful. Usually 1 or 2 different anti-biotics sort out an infection for me but they stopped working. I had various types until one finally made the difference. Thank goodness!

This is my experience of Echinacea + Hydrox 400 with RA. Hope it helps you.

Take care

J x

bexlt17 profile image
bexlt17

I do have good results with the B vitamins it makes me feel on top of the world, I do know when I have missed a few days of taking it, but I’m staying away from Echinacea from now on thank you all for your thoughts. Becky xxx

lifebeginstoday profile image
lifebeginstoday

Yer I take certain vits too such as the Bs and they have helped me too. J x

minka profile image
minka

well i do vit b12 fish capsult vit d and glucosomine

topped off with and i think this is good stuff APPLE CIDER VINIGAR IN LUKE WARM WATER YOU CAN BUT A BIT OIF HONEY IN TO MAKE IT TAST BETTER SEEMS TO CLEAN ME OUT.

i do know some of it can go back down the toilet.

elsa123 profile image
elsa123

I was told the same about echinacea, so I would be inclined to lay off that.

I take a multi vitamin and rosehip.

I also take milk thistle, this is supposed to support the liver and help it deal with toxins. Not sure if I should be or not?

I also take cider vinegar....going to put a question up about that in a mo.

If my throat is sore, I take manuka honey. This is supposed to fight infection, but not boost the immune system.

Really don't know whether I'm doing the right thing.

Nic x

Hi bexlt17

As the others have mentioned it is always best to check with your rheumatology team before you start taking any supplements.

As far as evidence for how/if supplements can help there was a very good report produced by Arthritis Research UK a couple of years ago looking into complementary and alternative supplements for RA, osteoarthritis and fibromyalgia. The supplement that came out with the top effectiveness rating for RA was fish oil, and it was also given a good safety rating based on a number of clinical trials. They reported on 40 supplements in total, if you would like to read more you can download the full report from their website: arthritisresearchuk.org/art...

Kind regards

Sarah Kate

NRAS

ShellB profile image
ShellB

Metho made my hair stop growing & I started zinc, I found it helped a lot. I came off metho & I am now on lefludimide, I continue to take it. It has grown so thick again & I am very happy!

I also take B6 (fatigue), fibre supplement & flaxseed (keep me regular), iron & vit c (I WAS anaemic) and finally evening primrose.

I eat a healthy diet, I just feel these give me an added boost & I 100% can feel the benefits of taking them

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