hi all !
I was wondering if any of you guys take vitamin D or any other vitamins that help your immune system or your RA?if so would you please kindly reply and let me know which ones and the strength as I’m going to take a trip to Holland and Barrett
Thank you 😊
Better if you don’t. If you need Vit D after being tested for deficiency then you’ll be prescribed it. Unless your diet is really poor then you’re really wasting your dosh buying supplements which mostly you really don’t need but are peddled by Holland and Barrett and others as essential.
If you’re on prescribed medication for RA it’s much safer if you don’t add to those even if you think they’re only vitamins and therefore not problematic. They can be and it’s best, if you think you are deficient in some, to check with your rheumatologist first.
I am a retired practice sister and have seen many people who have thought it’s a good idea to ‘boost their immune systems by spending money which could be better used for a holiday! Really. Entirely up to you of course and good luck with whatever you decide to do. 😀
I need Vit D as mine is very low, but my gp does not prescribe as he says it can be bought x
Its always best to chevk with your rheumy and gp. was advised by my gp to take vit d. I checked with the rheumy nurse and she supported this. I use the spray form , which you spray once a day on to the inside of your cheek, again as advised by the gp. Its got a nice minty taste . Better You is the make at 1000iu dosage. All the best 
I would be careful I had my levels checked though rheumatology as had symptoms and thought deficiency they were all fine and vitamin d was high although I am not supplementing.
Presuming you have regular blood tests & eat a good wholesome diet, your rheumatologist would have told you if you need any supplements.
For anyone on prescription drugs for any condition, they should never self prescribe vitamins or anything thing else as they could really upset what the prescribed drugs are trying to do.
So save our money & stick to what your doctor prescribes.
dr john campbell has a number of compelling evidence videos on youtube in which he discusses with experts role of vit d and i've taken this on board. check out for yourself.
But what suits one person will not suit another….So I will bore everybody rigid one more time…..if you take any prescription meds - before you start buying often expensive supplements…do ASK the doctor who prescribes YOUR drugs if what you intend buying is compatible with what you are taking.
I bet if someone did a survey investigating how much money was spent on unnecessary supplements…..a lot more people could afford that world cruise they are “saving up” for! 😄
Wow....yep the rigidity is setting in already! Yu obviously haven't listened to said discussions prior to coming to your conclusions.
With decades under my belt and letters after my name that include PMR, GCA & RA, I think I have a chair at the table to share my humble opinion.
All I suggest is folk watch the factual base findings and draw their own opinion and conclusions rather than poo pooing it. When there are may experts in the field talking out yet quashed by Big Pharma/ NICE who place 400 units as a daily consumption, whilst empirical evidence shows 4000 is more accurate, there is something to question.
Since commencing my Nordic D3 +K2 purchased from Amazon for a years supply @£10, I don't think I would have been going on any cruise if hadn't purchased ...however taken with my prescribed meds I'm now able to even consider going on one!
Sooo glad I didn't ask the question on here prior to researching and finding Dr John Campbells very informative series of discussion with experts, thus. Individual choice is a wonderful thing.
You seem very excited over everything you have read……yes, John Campbell does have a lot to say doesn’t he?
However, the point a few of us are trying to make…is not the necessity to take or not take supplements….but whether your own doctor who knows if the prescribed drugs you are taking will be adversely affected if you decide to add XYZ without consulting him/her.
If your research leads you to believe you would benefit from anything……go for it, but please just check with that doctor to make sure you don’t make a mistake.
Absolutely
I have to agree with you. My D levels were fine but I've heard many medics say that they believe the UK's vit D range should be higher due to the northern location. I too have been taking vit D along with K2. After a year of testing different ius I have more energy than I've had in years. I also take magnesium glycinate at bedtime for leg pain and sleep. I have a varied and healthy diet and try to get in direct sunlight not long after waking up. It also helps my circadian rhythm for sleep. My rheumatologist is aware of all supplements I take as anyone else's consultant should.
I was told by my GP to take it daily and that we should all be taking itMy bloods have been ok and rheumatology are happy
YOU were told, by YOUR GP…….so that is fine for you…but if I just did it because you did…it could make me very ill.
I’m not advocating never to take supplements…just don’t mix them with prescription drugs until you get the OK from the doctor who prescribes your regular drugs.
Hope that clears up Supplements!!
So there are several issues here, one is your rheumatologist is prescribing meds to reduce your over active immune system. So why would you want to take supplements that work against your meds. The other issue is that supplements use the same enzyme to metabolise as 50% of the meds we use. That results in either enhancing or inhibiting the effect of your meds. If it inhibits it never reaches therapeutic levels, but if it enhances then it can reach toxic levels.
I’ve experienced this personally when turmeric interacted with my clopidogrel , resulting in me being bruised head to toe. Although you can purchase supplements and vitamins over the counter, they can still interact with meds, so you should always speak with your specialist or gp, and check your levels to see if you are low in anything. A good balanced diet, should provide you with everything you need.
Yes to vitamin D. During covid it was on prescription. GPs always suggest Vitamin D supplements because of the lack of sunlight in Northern Europe and the difficulty of getting enough in our diet.
However my bloods show high levels of vitamin d without supplements
That's unusual as people generally have low levels due to lack of sunshine and diet
I normally have lots of sun holidays or uk when we have it and have supplemented too
That's the trick! Lots of holidays 😊
That is really unusual. It's very difficult to get sufficient vitamin D from food alone. Even if we spend a lot of time in the sun our bodies will simply stop making vitamin D once we have enough. When you say "high" do you mean optimal or too high? I've never heard of anyone's vitamin D being too high without taking supplements.
When I was first diagnosed with RA way back in 1978 my Consultant prescribed Fish Oil Capsules and Glucosamine & Chondroitin tablets. I’m still on them although NICE say you have to buy them yourself.
I also take 2000mg VIt D per day as suggested by my current Consultant.
I’m, of course, a picture of health! 🤣
It’s important to note that Glucosamine should not be taken by people on blood thinners, as it increases the risk of bleeds. It should also be avoided in diabetics, as it can lower sugar levels, and can also increase eye pressure, so should be avoided by those at risk of glaucoma. They do also suggest if using an nsaid as well, the dose of the nsaid may need to be lowered.
I understand your rheumatologist prescribed which is fine, but just want others to be aware of the reasons for checking with your specialist. Recent research also suggests it may raise bad cholesterol. So if your cholesterol is raised, I would check if it’s suitable.
Thank you for your concern and advice Runtig01.
I am actually Type 1 Diabetic and became so in 1978 after being treated with steroids for the RA following a serious injury at work.
I haven’t been prescribed NSAIDs since developing a huge stomach ulcer even while using proton pump inhibitors.
I wasn’t aware of the risk of Glaucoma. I will make sure my eyes are checked more frequently.
I believe you may well be a former medic.
Thank you once again.
I think the best advice is check first. The leaflet that comes with our meds usually says, do not take over the counter medications or supplements unless advised by your clinician. Yes there are many people in the general population who need extra vitamin d and may be able to take it safely. However the majority of these people are not taking the kinds of medication we are and would not have to think about their interactions. Whatever you take I hope it brings you benefits. Good luck.
so while you should check all supplements with a rheumatologist I don’t think there is any harm in looking at things that may help you.
I take Vitamin D , B12, Glucosamine, and iron
I have tried and taken other supplements over time and found that they didn’t do a lot including turmeric and CBD and a weird one I can’t remember the name of. Think it began with B
My B12 and Vitamin D was low in bloods and they both help with RA , now they are a normal level. They appear in protocols for treating RA and I had to ask for them to be tested.
I would add that I am a vegetarian hence the iron!
The Glucosamine is a new one and I have noticed a major difference in energy and swelling and flares. For me this one has really worked.
In terms of supplements I don’t think there is any harm in taking them but do your research, the cheapest or most expensive May but have the right dose and active ingredients.
Personally I don’t think it’s a waste of money as long as you are informed and do your research.
I take high dosage of vitamin D alongside my MTX and COSENTYX but my consultant did blood tests to check everything and they found a severe deficiency so I was put on Prescription high dosage then following on with routine which I buy. Although it is said that most of us are lacking it is best to get a blood test if you are on RA, or probably any, prescription medication before taking any vitamins or minerals to be on the safe side.
I agree I had lots of health issues none of the vitamins came back deficiency and had to ask for that blood test
Hi. I'm on cosentyx too and two months ago my rhumathologist test me for vitamin d deficiency. I'm waiting for my next appointement but does taking the vitamin help? I am close to a severe deficiency too.i have problem dealing with fatigue and pms that start at the same time then my arthritis.
To be perfectly honest it is hard to quantify an improvement. My bloods show an increased level of vitamin D now . My fatigue is erratic, never as good as I want but I am getting older each year too, despite trying to deny it 😂
Good to know. I'm 37 and the fatigue prevent me to do almost everything. If we don't find a solution i'm not gonna be able to work. Hope my rhumathologist gonna find a way because my gp seem useless.
Hi Since 2017 I have been taking potent plant medicine to help me with my sJIA as well as pharmaceutical drugs. The company started in America but now has offices in Europe. I use Doterra Life Long Vitality and although etanercept helped me after starting biologics in 2008, I still flared up two to three times a year.
Since taking these three pots of gold I haven't had any flare-ups, although I have a lot of damage in my body, which is debilitating, but I do the best I can with what I've got, so to speak. I still have some inflammation, but not the overall body flares I used to have before taking them. They have helped with my sleep and energy also. I use essential oils for infections and sleep too. I would definitely recommend it. They contain all the trace minerals, vitamins and more that your body needs. They cost £3 per day on the full dose, but I now manage after being on the full dose for 18 months, on half. Hope this helps.
Prior to taking the supplements I ran it by my rheumatologist first and she was happy for me to take them. I wouldn't take anything without checking with your rheumy team first as it may depend on the drugs you currently take.
doTERRA are great. I have a friend that sells it
They truly are. Their products are nothing like I've ever had before, and I've tried lots
So think you can see from responses it's very individual. In my case I never take any supplements without discussing with my RA team. We're all on treatment tailored to our bodies which are unique, so the answer to your question is discuss this with your RA team.
All the best 🙂
Just be careful my Nephrologist prescribes AdCal D3 but it can affect the kidneys so please don’t take a chance get some professional advice from your RA team. Even if otc and classed as a foodstuff you’d be very surprised at some interactions. Don’t risk helping the RA or not ? but risking an AKI. It’s really not worth taking a chance and once the damage is done it’s life changing. I stood behind a lady in H&B last week who was told a load of ill informed rubbish about Vit D and the assistant didn’t ask about getting a blood test from GP just sold £28 of goods. Be informed not advised.
Hear hear!
My GP and rheumy both say to take Vitamin D, so I take it.
When I was first diagnosed I read somewhere that most people with RA have low vitamin D. They don't know if low vit D contributes to developing RA or if people avoid the sun because of their meds & so develop low vit D. I started to take vit D as a result of reading this. I don't know which is best - I just buy the cheapest!
My Dr prescribes mine .
I am regularly tested for Vit D as I have a problem retaining it, so have high dose drops and capsules prescribed.
As for all the rest I spend my money on fresh food a d that gives me everything I need.
Only with calcium for ostoporosis from G P. SORRY FOR SPELLING.
Your immune system doesn't need any help as is overactive. Ra is your body attacking itself
Not all vitamins are bad so read up on what you need, I do hate people who just jump in with do not buy!! My consultant was very helpful, she believes in vit support too, some people who tut tut at at would rather you didn't, but even GP and consultants don't know everything so speak to your RA team they will guide you, not everyone is pessimistic!!!! Read about it online I'd rather take a natural vit than another man-made drug with side affects and as always "everything in moderation" my GP says.
I asked about that when I was first diagnosed and was told because RA is an autoimmune disease its my immune system basically attacking me , so why would I want to make it stronger. Think it made sense tho'
Yes I had vitamin D deficiency and was prescribed a high dose for 3 months. After this course I was told by Rheumatologist to buy over the counter vitamin D. I buy mine from Holland and Barrett because H&B are highly regulated, therefore, you can trust them. Hope that helps
I take vitamin d via spray, better you , as mentioned in another reply. Vit d was reccomended by my gp who also advised re the daily intake of calcium. I checked with my rheumy who reccomended the mouth spray version rather than tablet as its more easily absorbed. I dont have defficiency but appaz it helps with cardio vascular, energy, mood etc too. As well as bones.I also try to get outside early in the day , breakfast time, as this is also supposed to help and with circadian rhythms.
Do what makes sense to you and makes you feel good.
Best wishes . 🙂
I have it on prescription. Best to get advice if you need it or not
Vitamin D Guidelines UK
Vitamin D
Osteoporosis and RA
Finger deformity and RA
vitamin d 
