Vitamin D?: Are there any medications which should not... - NRAS

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Vitamin D?

Rachmaninov2
Rachmaninov2

Are there any medications which should not be taken with vitamin D?

Thanks.

106 Replies
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In theory check with a local pharmacy or GP first before taking

Yes, good idea Deeb. I will do that.

Hi Rachmaninov. I would definitely check with the GP or your pharmacist - they will know more than anyone else. xx

Thanks, springcross will do.

Interestingly, it's been announced today that the government will be providing free Vitamin D for people in care homes and the clinically extremely vulnerable (so maybe us??) for 3 months.There's also an investigation starting looking into whether it helps protect people from Covid...

It sounds like a great idea Boxerlady, I think I am classed as clinically vulnerable, so would be happy to buy them.Interesting re protection from COVID.

I have been taking vitamin D drops for several years at the recommendation of my rheumy and a dermatologist my hubby saw who said to me .. you would really benefit from it too. (When I was tested my D was as low as it could go which explains a lot of my aches and lethargy!) I only know that Prednisone depletes vitamin D. I won’t be getting any free vit as as I’m not on the CEV registers due to hospital error, let’s say. I’m working on this and asking my GP as rheumatology admin are for some reason not adding me on their register, though my nurse says I’m definitely a level 3/higher risk. I’ll keep trying. I couldn’t take the standard vit D tablets anyhow but a decent gesture to offer it free.

Glad the drops are working for you, I didn’t know about them. Is testing for Vitamin D a standard procedure do you know Neonkittie? There seems to be a lot of confusion about who is on the register and who is not!

Hi, Rachmaninov, vitamin D isn’t on standard tests for RA but it was my husband’s dermatologist who recommended it for him as he had had a melanoma on his calf removed. He was told to protect his skin and wear a very high sunscreen and UV clothing etc and start on vitamin D tablets. Then the dermatologist told me to investigate for myself given I’d had a lot of steroid injections and I had RA. I showed my GP the D drops I bought to ensure I was taking sufficient a dose. My D levels went to good/normal levels after two months.

I am determined to be on the register and will be phoning my GP’s secretary next week to confirm the letter has been received. I know many people have been included and surprised to be so as they said they don’t know why as they have very stable conditions and not even on any meds!

Hello Neonkittie, glad you are now at the right level.Again, it doesn’t seem to be very well organised.

I was tested by my rheummy when I was diagnosed I had low vit d there appears to be a connection with RA and low vit d which some hospitals are investigating

I wonder why some test and others don’t. Maybe now they will all do it.

My GP suggested Vit D levels check as I had classic signs of sweating head just awful and sleep issues and when he ran the test I was really low. So I am now on it all the time.

Thank you for your response Green230461.

It is for diabetics

Thank you GlamNana.

woodstar1
woodstar1 in reply to Boxerlady

I'm a Prison Officer and they have started to give it out to our prisoners for free as well. There must be something in it, I'm taking it just in case as well!!

Very interesting woodstar. I don’t blame you, I think this will encourage a lot of people to take them. I had better get mine before they sell out!

Lizard28
Lizard28 in reply to Boxerlady

I got a text a few weeks ago asking me to text back if I wanted vitamin D, they sent one back saying it will be sent out in December

👍

My specialist nurse told me to take vitamin D during a telephone appointment last July, I'm on mtx and enbrel. I have been taking a multivitamin tablet everyday and she told me that was fine.

I did read about a month ago that the government are planning on giving people in the vulnerable group for covid free ones, the article said that a large percentage of people hospitalised due to covid were found to have a vitamin D deficiency.

Rachmaninov2
Rachmaninov2 in reply to Paula-C

Thanks for that info. Paula.

I’m not sure if it will be the vulnerable or the very vulnerable.

It is pretty cheap....although the loading doses are much more. Next time you see your nurse/doctor ask to be tested. I am tested every 6 months, and on drops permanently as can never get levels to stay up.

Thanks helixhelix, but what are loading doses?

I was so low that I was given mega-doses for a month or two to boost it, and now on a maintenance dose.

Thanks for that helixhelix.

Me too, I take the drops permanently.

Haz58
Haz58 in reply to Rachmaninov2

Everybody who had a letter from the NHS telling them to shield.

Rachmaninov2
Rachmaninov2 in reply to Haz58

Thanks Haz.

JGBH
JGBH in reply to Rachmaninov2

I believe it's only the very vulnerable.

Rachmaninov2
Rachmaninov2 in reply to JGBH

Yes, I think so JGBH.

I have been taking vit D for years. I asked to be tested after reading research that indicated that low levels were common in RD.

I have to say that I felt the benefit straight away, and wouldn't be without it now. As a shielder, I was offered 3 months supply, but don't need additional doses. However, I would recommend it to anyone with RD

Great info. Hatshepsut, thank you.

I’m a coeliac and on mtx I take one a day and it’s fine ..I think everyone should take through winter months as there is no sun

Yes, a lot of us have spent more time indoors recently too.

I’ve taken vitamin D for years - it’s one of the vitamins that are important if you have thyroid problems. You want your vitamin D to be well up within its range. I test about twice a year with a City Assays home finger prick test - you just phone up to order it then pop a few drops of blood on the card that comes through the post, return it to them and get the results through in a few days. That way I can increase or decrease how much vitamin D I take. I also take vitamin K2 Mk 7 because it directs the vitamin D to your bones (I’ve got osteoporosis too)

I take it with other medicines with no problems but check with your pharmacist if you aren’t sure.

Thank you for your response and info. Fruitandnutcase, it may well be my course of action if my GP doesn’t feel it’s necessary. I am learning a lot from the so supportive members of this forum which is vital in my fight against this horrible disease.💐

When I was being treated for Graves’ disease years ago I was never able too persuade any of my doctors to test vitamin D even though I knew it was something that you need to help your thyroid. One even said he didn’t know what it was about vitamin D that it was fashionable to want it tested!

After that I did my own testing. Now it is something that is vital for your bones and it is being pushed by the government for covid.

You might find your doctor will test or he / she might just give it to you. If you have to buy your own then BetterYou produce a vitamin D/K2 combination spray - you just spray it into your mouth - a lot of people use that one. I use NuU softgel capsules and vary how much I take depending on my levels. I’m like helix helix, my vitamin D levels would drop quite fast - even if I’m out in sunny weather - if I didn’t take it.

I have just looked at the City Assays website and have the info. just in case.Have also looked for drops but not many available. Where do you get your BetterYou spray and NuU capsules?

Heard on the radio news a few hours ago that people on the vulnerable list are going to get three months supply of vitamin D because they've been told not to go out.

J1707
J1707 in reply to Paula-C

Be nice if someone contacted us and let the vulnerable what’s happening. According to the government site we have to return to work unless our employers will furlough us.. it’s all on us

Rachmaninov2
Rachmaninov2 in reply to Paula-C

Thanks for letting us know Paula.

My D count isn’t low but I was advised to take a vitamin D supplement by my rheumatologist - particularly during the winter months and especially now whilst COVID is a risk (although he said there were potential benefits and no harm in taking this supplement all year round). I am on methotrexate, hydroxychloroquin and Amgevita (humira biosimilar) medications.

Vitamin D was described to me as a sunshine vitamin because the sunshine is predominantly where we draw our supply of it from. Amongst other things, it promotes a healthier immune system and stronger bones and to benefit I was advised to be exposed/out in the sunlight for 15/20 minutes a day. Obviously that’s difficult in the winter, hence the supplement. I had been taking vitamin tablets but recently swapped to a vitamin D mouth spray by Better You (£5-£8) after listening to an NRAS seminar. The speaker explained that we absorb it better through the lining of our mouth, rather than swallowing and it passing through our stomachs where some would be excreted out. It’s down to personal preference though.

I’m happy to share these/my experience but please seek your own professional advice before making any changes.

Thanks for that detailed info. CagneysMum, and sharing your personal experiences.I will speak to the professionals and then do some research myself.

The NHS rexommends that everyone should be taking vitamin D during the winter months as what you eat may not be enough.

‘But since it's difficult for people to get enough vitamin D from food alone, everyone (including pregnant and breastfeeding women) should consider taking a daily supplement containing 10 micrograms of vitamin D during the autumn and winter.’

Rachmaninov2
Rachmaninov2 in reply to LG199

Thanks for that info. LG, I guess that even if we think we are eating a reasonable diet, it depends on how well we are able to process that food.

If I remember right when we were first told not to go out March time we were also told not to sit out in the garden, I couldn't understand why we were told that. Well I sat out a lot in the garden in all that lovely sunshine that we had. We're very fortunate to have a nice garden to sit in, I called it my happy place. Looks now that it was the right thing to do. I got a better suntan than what I got when we had two weeks in the Caribbean last December.

Rachmaninov2
Rachmaninov2 in reply to Paula-C

Glad you had a great summer Paula, we did have some very hot 🥵 days.

Just found this, vulnerable people are to be given free vitamin D tablets.

itv.com/news/2020-11-28/cov...

Rachmaninov2
Rachmaninov2 in reply to Paula-C

👍

My rheummy put me on it about 6 years ago and said I would be on it for life. We don’t get a huge amount of sun in NE Scotland plus with the biologics it isn’t good for me to sit in the sun as my skin blisters

Rachmaninov2
Rachmaninov2 in reply to Knit12

Glad you have a good rheumy Knit12.

I've been taking Vitamin D for about 8 years, which is 5 years before I was diagnosed with RA. I had a dangerously low level and so was first front loaded with a course of very high doses of vitamin D before taking the regular recommended amount. It took 18 months to get my levels back to normal and I've been taking vitamin D ever since.

My GP at the time did say that in the UK vitamin D deficiency is a general problem because we're in the northern hemisphere, which means we don't get enough natural sunlight all year round. He also said the darker the pigmentation of your skin, the harder it is to absorb vitamin D.

I didn’t realise it took so long for the vitamin D to work.

At least we are becoming more informed about supplements now.

Not sure but I was advised to take it from the beginning of being diagnosed with RA, and I’ve been on 6 different RA drugs plus steroid. Recently been told I need calcium too. My nails have never been so strong!

So no problems with interactions Madmusiclover.Shake us and we will rattle.

No, none for me. Recent blood test showed VitD levels fine.

👍

Hi I’ve just been given Adcal-D3 which are calcium and vitamin D by the RA doctor. I’m also on methotrexate, hydroxychloroquine, prednisone, folic acid and omeprazole and I read an article saying all vulnerable people were getting them free this winter. Hope that helps

I am taking Hydroxychloroquine, Prednisolone, Omeprazole, Amlodipine and due to begin Methotrexate soon. Are you able to tolerate your medications without any bad side effects Spin1959?

I take the methotrexate on a Saturday night and then I’m a bit zonked on Sunday. I have some toast first thing and it seems to stop me feeling sick

Thanks for the info. Spin.

Miasnana
Miasnana in reply to Spin1959

I’ve been on adcal and vitD for 20+ years in conjunction with sulfa And hydroxychloroquine and had no adverse effects

Thank you for that Miasnana.

Hi, I take it for osteopenia which was diagnosed after my body scan as have a family history of osteoporosis and the impact of RA.

It does have a massive impact in so many ways doesn’t it.

Was prescribed 3 months Vit D by GP after a blood test, so looks like that is the better way to go? 👍

Rachmaninov2
Rachmaninov2 in reply to Happy5

I will see what my GP says and take it from there Happy5.

Hi taking Adcal-D3 and about to have infusion tues for bones. Is it recommended we also take extra vitamin D then. Just wondered. I also have cod liver oil straight out of the bottle started that when first diagnosed. That’s a good few years back

I don’t know about Adcal-D3 orange33, but it seems that you are doing what you can to help yourself.

My rheumatologist has prescribed vit D for me, I take mtx, , prednisolone, hydroxychloroquine and folic acid - she felt it was important because of my age 72.

My situation is similar in regard to Prednisolone, Hydroxychloroquine and soon Mtx. and I believe folic acid. I am the same age as you Arlescote. Mine didn’t mention it.

I have taken better you Vitamin D, oral spray, in the past. Though now take a vitamins D complex. I don’t take any multivitamins on mtx day, that’s just to be on the safe side, although I have checked & been told it’s ok. But as I don’t take the folic acid on the same day as we all know I just made a conscious decision not take any multivitamins on that day.

Rachmaninov2
Rachmaninov2 in reply to Durrell

Thanks for that Durrell, sometimes you just have to reach your own conclusions as to what is best for you.Can I ask why you changed to Vitamin D complex rather than the oral spray?

Durrell
Durrell in reply to Rachmaninov2

Well extremely interesting what Pythagorean has posted!! I am seeing a functional therapist & she has advised me to take a vit D complex, which I’m more than happy to do, I also take fish oil (omegas) & magnesium citrate(which I take at bedtime) no inter reactions. So all good. I can say I find the magnesium extremely beneficial as I now realize that what I thought was just aches & pains along with RA was in fact, CRAMP! Which has now completely gone, great relief. I still soak my feet in a bowl of Epsom salts & use “Better You” joints spray daily, all really helpful...,

Rachmaninov2
Rachmaninov2 in reply to Durrell

Thanks for the informative response Durrell, I have found Epsom salts helpful too.

This may be of interest to anyone taking or considering taking Vit D. Barts and The London school of Medicine and Dentistry are carrying out research into VitaminD deficiency especially found in older people, people who are overweight and Black andAsian people. ‘The UK government already recommends that people take a low dose Vitamin D supplement (400 IU or 10 micro grams per day)to protect bone health. However,many scientists think that this dose is not enough for optimal immune function and they will test whether higher doses of Vit D (that are well within safe limits) might offer better protection against winter respiratory infections including COVID-19’I am one of the 5440 people taking part in this study. I am on Methotrexate and Benepali and there are no contraindications. But always check with the pharmacist if taking any supplement not prescribed by a doctor.

Thank you for this. Have you felt better on it?

Interesting info Pythagorus, thank you. Do you have any idea when the results of the study may be published?I will check with the Pharmacist.

Durrell
Durrell in reply to Pythagorus

Well done you being on the study, please keep us updated on your progress, how your feeling etc. I find it fascinating to hear about. Thank you for sharing this with us, look forward to a hopeful update.. I’m well aware we deplete many vits & minerals, magnesium being forefront along with vit D.,

My rheumatologist wrote me a letter to tell me I was a bit low and to take at least 1000 IU daily . That was a while ago now . I wasn’t aware they were testing for it but am glad they were on the ball now .

Perhaps more Rheumatologists will check for vitamin D deficiencies now.

This is a more general reply about interactions. A GP prescribed me a drug that should not be taken with methotrexate, even though I had asked whether they were OK together. A pharmacist warned me and I also looked it up on bnf.nice.org.uk/drug/ where you can find any drug, click on Interactions and then click on the drug name under the heading Individual Interactants. The most dangerous ones come up on a red banner. The drug I'd been given was there!The BNF (British National Formulary) is the pharmacist's Bible.

Green230461
Green230461 in reply to Bacharia

Good to know thanks

Thanks for your response Bacharia, which shows that we do need to double check anything told to us by anyone including professionals. I have realised that they are not always well informed enough to be able to answer our questions.So often difficult for us when we are feeling unwell.

I don't heap blame on them for mistakes because they are under such pressure in these times. I did draw attention to that particular mistake, but said I was not wanting the big guns rolled out against the doctor, just a quiet reminder to check. Pharmacists seem to have that website permanently open. I noticed the one who warned me used exactly the same words as on the website. I've found them to be much better informed about drugs than GPs are, but then, that's their speciality.

I will be using that website in future Bacharia, great help.

I've been taking Vit D for many years, all year round, on the advice of my rheumatologist - also Vit C. If you take Vit D you must have regular blood tests for the Vit in order keep an eye on the level. Too much can cause Vit D toxicosis. A blood test once a year is enough. If you only intend to take it for the winter months, I shouldn't think that applies.

I did read once that a Danish research project came up with the idea that taking Vit D could help prevent RD, but the evidence didn't show that taking it once diagnosed helped to alleviate it. But science has moved on since then, so who knows?

Keep well, whatever you do,

xx

Very informative bienassis, thank you. Here’s hoping.You too.

JLT1
JLT1 in reply to bienassis

I'm glad to see you have mentioned that overdosing on Vitamin D can cause toxicity (no one else has done so on this thread, to the best of my knowledge). Too many Vitamin D supplements can cause fatigue, weakness, bone loss, blindness, liver damage, etc.

bienassis
bienassis in reply to JLT1

It is a surprise to me, JLT, that so little is known about Vit D by people who take it - sometimes in quite large doses. In some respects Vit D is like Vit A in that, being fat soluble, it is quite easy to overdose, with toxic results. It would be difficult to overdose on Vit C which is a water soluble vitamin and needs to be taken daily (but please, don't therefore stuff yourself with Vit C tablets; it is readily available in fruit and vegetables).

Fat is stored in the body (how well we know that!) and takes in the Vit D, whereas Vit C can exit the body with water.

Most of those who find they are lacking Vit D do so following a blood test, and can then be treated quite easily by supplements - especially people in care homes who don't get out much and do not get much exposure to sunlight. And for most people, daily doses of sunlight is all they need - just a 15 minute walk outside on a sunny day is good. Those who take supplements should do so under the care of a doctor. Vit D should never be taken like sweets - they can be very toxic in large doses over time, as you so rightly point out in your post.

This really should be explained by the medical profession when prescribing Vit D. The thinking just now seems to be if you take the vitamin for 3 months during the winter months it won't do any harm. But, I would always get a blood test first. It is certainly true that a lot of people are unaware of their lack of adequate Vit D.

There is quite a lot of literature about vitamins generally, but we have to be careful that it is not being touted by those who stand to gain financially; make sure the information is medically sound.

A Very Healthy and Happy 2021 to all of you.

bienassis xx

I asked the GP if I needed a blood test before taking vitamin D and she said no, everyone should be taking supplements. I have been taking 1 drop of Oilesen D3 a day for approx. 3 weeks.

If your GP doesn't think you need to be tested first then he/she is obviously sure you need the supplement. So that's fine.

When I first started taking Vit D it was on the advice of my rheumatologist in 2008 - following a blood test. Several years later I was tested again and my level had increased to such an extent that I was advised to half the dose. Now, as a matter of course, I have an annual check and adjust the dose accordingly.

The vitamin builds up slowly so it is easy to forget how long you have been taking it.

My GP leaves me to ask for various tests annually without waiting for him to request them. The tests are for Vitamin B12, TSH, Calcium and Vitamin D.

It works well for me.

bienassis x

Thank you for the response bienassis, as far as I know I have never been tested by GP or Rheumatologist so I’m not sure that she can be certain.

I have low vitamin D levels and been told to buy it by GP. I’m clinically vulnerable too so this will be interesting if I’m offered free vitamin D supplements. I wasn’t told when advised to buy vitamin D supplements that they interact with anything I take. But I’m sure pharmacist will advise.

Did you have a routine blood test to determine your vitamin D level bunnycaramel?I’m not sure but I think it may apply to clinically very vulnerable, but I may be wrong.

Will speak to the pharmacist about any possible interactions.

I asked for a blood test and Vitamin D level was very low. This happened 3x I had loading dose 3 times I the last 4 years and continued with vitamin D but now I take a larger dose as advised by my GP but I purchase them which I think is unfair when there are lots of people I know get their supplements on prescription

Thank you for that info. hopefully I will be able to have one done at my GP’s surgery. Hard to know how they decide who can have them prescribed and who have to buy them.

I've spent some time reading the posts on Vit D, and it is rather puzzling that some patients with RD are prescribed the Vit and some are told to buy it. This could be because different Trusts have different policies or, more likely, the decision is left to the individual rheumatologists, or GPs. I started taking them on prescription in 2008 when transferred from a London Trust to a Kent Trust (nearer home). My new rheumatologist was very keen on certain supplements.

I had just about every blood test in the book and was prescribed Calcichew for the Vit D and Calcium;, and Vit C because the methotrexate depletes the body of Vit C. It is true that Vit C is readily available in food, but unlike Vit D it has to be replenished daily. Vit D is stored in the body.

For a number of years I was taking 2 tablets of the Calcichew; gradually the Vit D level increased - to such a extent that I was advised to half the dose as I was in danger of vitamin toxicosis. Since then I have been having yearly blood tests and adjust the dose accordingly.

It was also suggested that I might like to take Vit B12 because, although not Vegan, I eat precious little meat. No offer was forthcoming to prescribe it, so that one I buy.

My medication consists of Methotrexate, Remsima (Infliximab), Folic Acid and Thyroxine ( hyperthyroidism).

Having started my RD journey 53 years ago I'm constantly amazed at how knowledgeable you all are - especially since there is so much to absorb, unlike when I started out with aspirins and gold and nobody mentioned vitamins! Just the variety of drugs available for RD today can be bewildering.

Good luck to all of you and continue to be as informed as possible. Keep asking questions - we need to be kept up to date. They won't always know the answers, but they should trust the patient and be straightforward.

bienassis

Thanks for an informative post bienassis.

Iron medication and thyroid medication should not be taken at the same time due to absorption issues, but that is all I know. Leave four hours apart.

Thank you.

It should be on the leaflet in the box of vitamin D. All the best.

🙂

Not that l know of unless they have put in additives that you are allergic to. Soak ip the sun when uou can

Rachmaninov2
Rachmaninov2 in reply to Blot

🙂

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