Vitamin d : So lots of evidenced based research on... - NRAS

NRAS

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Vitamin d

allanah
allanah

So lots of evidenced based research on benefits of vitamin d and covid now. I somehow remember along the way though my doctor saying RA shouldn't take it as it interferes with our immune system. Does anyone know what is correct or know where I have that in my head from. My shielding letter allows me to get vitamin d which I have applied for.

I will double check with my chemist but am wondering if anyone know about this topic. Thanks

67 Replies

Hi 🥰 Strange and I hope not as my rheumy prescribed it for me (Adcal d3)... particularity because of my being on. the Pred. X

allanah
allanah in reply to bubblyalex

Yes think I've got it wrong n my head somewhere A !

I take Vitamin D which has been prescribed for years now because my levels fall very low. I had some blood tests on Monday but was unable to have my Vit D levels checked as I understand from what my GP told me that due to Covid and the research into the benefits there is a shortage of solution that measures for levels of Vit D so she couldn't order a test for this at the moment. Always best to check for you if it is something that you can have so good idea to double check. xx

allanah
allanah in reply to Pippy25

Thanks x

It also is said no to kidney patients so I contacted the nephrology consultant who rang back and said a leaflet written by a ----- with huge generalisations. You must keep taking the Ad Cal which is D3 that I prescribe as its vital to keep your bones good. And evidence is mounting that it does make a difference i the fight against coved effects. This may not be the same for all as it was advice to me, however he in the pecking order has priority and the RA consultant refers to him before any prescriptions are dished out. Mr D said a few other things as he has a sense of humour about cost v quality too. lol

allanah
allanah in reply to medway-lady

Thank you x

medway-lady
medway-lady in reply to allanah

Mr D did also have Covid at the beginning and at yesterdays kidney zoom meeting they are saying 1 in 4 who die have kidney problems. But they might not have known, so it did reinforce be careful message. My son has just been pinged 7 times yesterday as now has my DIL for 5. He has had to work until then but DIL has been nowhere except the park. He's had a negative test and now they've found the neighbour has it and the phones may be just a few feet away but on other side of a wall. I'm praying all is well, and feel so helpless as can't do anything. But they assure me that they are just fine although a nice home made meat pie and fruitcake might help. As if !! xx

allanah
allanah in reply to medway-lady

Fruitcake is high in vitamins . .

medway-lady
medway-lady in reply to allanah

And nutrients he he. They are so cheeky but do love them. lol xxx

Mine told me to take it at my first consultation... we often photosensitive due to the meds do we can’t always get from sunshine

Pippy25
Pippy25 in reply to J1707

Having RD and Lupus I am sensitive to the sun and when I've had shingles the anti virals say avoid sunlight also like you say due to photo sensitivity.

allanah
allanah in reply to Pippy25

Yes I've got RA and lupus, strangely not too bad in the sun unusually!!

Pippy25
Pippy25 in reply to allanah

I guess it affects everyone differently. RD and co puts many a spanner out from it's tool box which affects us in different ways. xx

allanah
allanah in reply to Pippy25

Thanks x

allanah
allanah in reply to J1707

Thank you

Sounds like I got it wrong somewhere...

Neonkittie17
Neonkittie17 in reply to allanah

Read below but still get yours as it could well be that the amount we take as RA patients is acceptable. x

J1707
J1707 in reply to allanah

That’s normally me 😂

allanah
allanah in reply to J1707

😂😂

I’ve read before it may slow the immune but didn’t think so at the recommended levels we take as RA patients. I was so terribly low it’s only returned my D to where it should be and not gone higher than it should be. If we don’t have the D then we are said to be vulnerable to infections. My rheumy said it was acceptable to take what I do (Nature’s Garden D3 drops.) I didn’t read too much into it as I was so under the amount I needed to take to bring it back to normal. I’ve been taking it for around 6 years. Last week when I spoke to the general rheumy nurse she checked I was still taking it.

(Something at the back of my mind though makes me think I once read it can act similarly to a steroid? I must go do a little surfing of respectable pages. ) xx

allanah
allanah in reply to Neonkittie17

Maybe that's where I got it from ....I'll need to ask my chemist

Neonkittie17
Neonkittie17 in reply to allanah

I looked on a reputable vitamins page and saw it referred to Vit D as a “secosteroid hormone” which is where I must have remembered the steroid reference from.

Also more importantly I saw that if you are on Prednisone you should definitely speak to your Doctor about the level of Vit D you should take. (I took Pred for 10 months and then found I was very D depleted so makes sense. )

allanah
allanah in reply to Neonkittie17

That's where it comes from. I'm on steroids and also steroid waves, so ill check..thanks x

Neonkittie17
Neonkittie17 in reply to allanah

Let us know what the pharmacist says Allanah. x

allanah
allanah in reply to Neonkittie17

Will do today

Yes I was given Calceo chews which contain Vitamin D as I have developed osteoporosis due to having to take steroids over a long time.

Sounds like a much better option with the chews. The drops I use taste slightly of orange so they aren’t unpleasant. Sorry for your osteoporosis. x

allanah
allanah in reply to Neonkittie17

Thanks x

Weird because my rheumy put me on calcium and Vit D tablets as apparently RA can make you more at risk of osteoporosis. Especially as I am post menopause. He later said to continue with just the Vit D. So who knows?

allanah
allanah in reply to MadBunny

Well defo not me !!

I was put on alendronic acid tablets because of bone issues. Then told to take vit d too! The more you find out the more confusing it is! Applied for vit d tablets on letter and was going to clear it with hospital if they ever arrive!

allanah
allanah in reply to Green230461

Yes I hear they are taking a while!

Yes and so was I luckily the Nephrologist saw it and wrote in CAPS to the GP its not licensed for Kidney patients and as he put it MUST, MUST never be taken. So the whole thing is a minefield. x

Mine was a simple blood test to check the situation and as a result I’ve been taking vit D since under ‘rheumy’s orders’.

I take Adcal and vit D whether it helps i don't know one says yes and another says no but I will continue with it and hope it helps ,if I ever get to see my enemy nurse to ask

There’s a lack of research in this area, and it’s not conclusive that it’s RA itself that causes us to have low VitD levels or the lifestyle that goes with it (if you’re in chronic pain you go outdoors less). It’s also not conclusive that improving out Vit D levels does anything for us apart from reducing risk of osteoporosis if our vit D levels were low. But i’ve not read anything that says it can do harm!

Ideally we should have Vit D levels tested, and then take Vit D based in the results, but it seems as if that doesn’t happen often. I do get tested every 6-12 months and have Vit D on prescription as can’t keep levels up otherwise - despite healthy diet and being outdoors a lot.

This is an interesting paper for fellow nerds, which concludes

“There is also, as yet, no clear evidence that supplementation prevents or lessens RA disease activity. Therefore, the current evidence base to support the notion of widespread vitamin D deficiency in RA patients (as in the greater population) as a major public health concern in relation to non–bone mineral diseases is relatively weak. Furthermore, the impact of vitamin D supplementation in these patients, beyond management of osteoporosis risk, is unknown.”

onlinelibrary.wiley.com/doi...

allanah
allanah in reply to helixhelix

Thanks!

I received 3 month supply from the government yesterday. I become deficient in vitamin d and have been prescribed it by my consultant in the past. So this was very welcome.

Mish-da
Mish-da in reply to Pat13

Hi Pat13 where about a do you live? I’m hoping to receive mine soon. Found out yesterday I’m deficient in vitamin d so I would also very much welcome them!!

Pat13
Pat13 in reply to Mish-da

Billingshurst in W Sussex. We’re lagging behind in the vaccine though!!! Good luck

Mish-da
Mish-da in reply to Pat13

Thank you! 🤞

Had my vaccine last week... good luck!!!

allanah
allanah in reply to Pat13

Nothing here about vaccines in north york. Very slow ...

Neonkittie17
Neonkittie17 in reply to allanah

Same here my part of West Yorks. I saw a new vaccination centre had opened at York? It’s still 30-40 mins from us so think I will wait till the doc practice has organised the venue to do it there. x

Mish-da
Mish-da in reply to Pat13

Just received them...happy days! 😃

Hi allanah, I’ve been told to take Vit D as a result of being identified as deficient in a blood test requested by rheum after I was complaining of more general aches and pains. Apparently if our levels of Vit D are low, one of the symptoms is joint pain, so those of us with RD may not even notice and just put it down to the disease. 🤦‍♀️

Everyone shielding Scotland got3 months supply in November. I’m confident that it’s safe.

Neonkittie17
Neonkittie17 in reply to cathie

I have been taking D3 drops for around 6-7 years now at the recommendation of the rheumy and GP (where my blood test was very, very low .. the doc phoned me and said get a script now and in a couple of months it will be vastly improved .. it was. I chose to get my own drops as I’m not a person who takes tablets easily, but she made me show her the brand and dosage and approved it. ) Initially it was my hubby’s dermatologist who told him he needed to take them then said to me if I hadn’t been tested for Vit D to do so as could explain my constant fatigue, which was bonkers even given I have RA. It did improve immensely. Back to normal after two months. Was told to test it every 6 months and gone over this time but in March I’ll get it tested again with the next blood tests of possible.

I did read on here that someone said there is a shortage of the liquid they test Vit D levels in due to their studies for Covid and beneficial effects D, so I’m not sure if I can have my own Vit D test but I’ll ask. Hope you are well Cathie, as best as we can be at the mo. x

My daughter-in-law tagged me in a post about free vit D for RD from the government but again it appears it's in England and see from above Scotland only, Wales pah! x

allanah
allanah in reply to Garnacha

Aw. Hope you get dome, dont know what's going on in wales, hes holding lots of stock of vaccines apparently

Garnacha
Garnacha in reply to allanah

Yes he's a flipping nightmare (dripford) who knows when we'll get our vaccine, my 85 year old motherinlaw only got her first one last week but I know of loads of over 80's still waiting!

allanah
allanah in reply to Garnacha

He said he was holding them back yesterday so that staff weren't doing nothing when the first batch finished. So stupid get those into peoples arms !

Garnacha
Garnacha in reply to allanah

honest to god you couldn't make it up!! how irresponsible is he, he back tracked later but it was already out there, his side kick Vaughanknowsnothing as usual tried defending him, bunch of idiots, mind you, all the other side don't sound much better with the latest blunder on drinking in the Senedd after alcohol was banned in licensed premises in Wales!!! They're all saying they did nothing wrong but apologised as it's not in the spirit on lockdown!

allanah
allanah in reply to Garnacha

And people are still dying 😭

Garnacha
Garnacha in reply to allanah

Exactly! x

helixhelix
helixhelix in reply to Garnacha

It is pretty cheap....

Garnacha
Garnacha in reply to helixhelix

thank you, I don't mind buying it but haven't been told I should take it by anyone, not sure if as mentioned above blood tests show a deficiency but I was told my last blood tests were stable, they didn't go into anything, a few years ago I was taking multivitamins and became seriously ill (not from these) and nearly died, I was told at the time that multivitamins don't really do anything so I've stayed away from anything like that, obviously this was years ago before I was diagnosed with PsA

allanah
allanah in reply to Garnacha

It was on my shielding letter from the government to apply to them for it free

Garnacha
Garnacha in reply to allanah

aah my letter came from Dripford's government :) that's probably why it's not included, why would he give away vitamins when he's holding onto vaccines!

I have had vit D 3 on prescription, years ago I was found to be deficient. Back then I definitely found my condition improved.

allanah
allanah in reply to hatshepsut

Thanks x

Hi allanah. My rheumy also told me to take it but I had been taking it for a few years anyway. x

allanah
allanah in reply to springcross

Thanks xx

Hi my rheumatologist actually advised me to take it .

allanah
allanah in reply to Beladona3

Good to know xx

I was prescribed it by the GP long before I had RA. However, my rheumatologist knows about and has approved every supplement I take, as has the rheumatology pharmacist. Neither has objected to it. I'd say it's fine to take it, but you can always check with a pharmacist. They love to be asked as it acknowledges their expertise.

I was recently prescribed ad-cal D3 by rheumy and also alendronic acid. I tried the ad-cal and it made me so poorly so I had to stop it. I let my GP know and he said just take the alendronic acid. So far I’ve been fine with that. I know I’m vit d deficient have been for years in my case I just can’t tolerate it if it comes with calcium too either makes me hurt so badly I can’t stand it or upsets my stomach big time. I was given a depo recently which has now worn off so back to square one and in pain but I’m not currently on steroids or any R.A. meds at present so hardly surprising, got a letter today cancelling my appointment on 5th February today too so no doubt I will be making a begging call to nurses pretty soon. Need the vaccination ASAP before I can move on with any kind of plan. Being CEV I should hear soon but won’t hold my breath it will be very quick.

Vitamin D I would say is essential,?I have fractured my back in 6 places just bending down , and was told it was because more bones were so bad after taking Prednisolone , now been on vit D for 2 years ,?as long as you try and have plenty of veg , fruit ,!protien you should be ok .

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