Vitamin d oral spray: Hello everyone I have Uctd... - LUPUS UK

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Vitamin d oral spray

Daisy78 profile image
15 Replies

Hello everyone

I have Uctd and secondary Raynauds and my vit d has always been consistently low. The standard vit d tablets from chemist hasn't helped get my levels up at all.

A friend mentioned the oral spray as it is absorbed straight in to the blood stream, has anyone tried the oral spray and has it helped please? Or any suggestions to help get the levels up, I've got no energy at all.

Also my stomach is very sensitive and I don't think I'm getting all my body needs from food etc as I've lost a lot of weight, so hopefully if it doesn't have to go through my very slow system it may work 😊

Thank you x

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Daisy78 profile image
Daisy78
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15 Replies
PMRpro profile image
PMRpro

What sort of dose have you been taking? To remedy a very low vit D means taking something like 60,000 IU per week for 8 to 10 weeks. The piddly doses the chemists purvey are barely enough to maintain a vit D level, never mind increase them.

My husband sorted his out with a vit D solution prescribed by the GP here in northern Italy - but now he uses a spray and really likes it (he struggles to swallow tablets). I have no idea whether it makes a better job of keeping his vit D up where it should be though!

Daisy78 profile image
Daisy78 in reply toPMRpro

Hi PMRpro

Wow thank you for that, I didn't realise there was a difference, I think I've been talking a piddly dose as I can't see a strength on the tub😳

On the spray it says 3,000 IU so I don't know if that's going to be enough either ☹️ at 1 spray a day, will give it a go anyway,(maybe a cheeky extra spray here or there will help)

Thank you for your information it's been invaluable x

PMRpro profile image
PMRpro in reply toDaisy78

If you are really low - ask your GP for a prescription for high dose vit D.

Is there a figure on the tub that has a unit that looks like a u with a tail as in ug?

Daisy78 profile image
Daisy78 in reply toPMRpro

Oooopps!! It's 5ug, I didn't know , thought vit d was all the same.

Rheumy gave me a prescription at the start for 12 weeks, then I asked gp for more, she said no I should just buy them, so that's what I've been doing, can't remember what the levels are (will check) I just need some energy

Thanks so much x

PMRpro profile image
PMRpro in reply toDaisy78

It is all the same - but like everything else the dose varies!

5microgrammes is 200 IU. You need an absolute minimum of 400 IU, preferably 800IU and here our local osteoporosis guru (medically trained doctor) says 2000 IU per day especially in winter.

Daisy78 profile image
Daisy78 in reply toPMRpro

Great information thanks very much 👍

Think I'm going to have to up my dose I definitely haven't had no where near enough vit d,(especially living in not so sunny London) even when it is sunny ☀️It's far to cold for me, so I'm never going to get it that way 😂

Thanks again x

Daisy78 profile image
Daisy78 in reply toDaisy78

Nutritional information

Serving: 1 spray

Amount per serving: 3000 iu

So that's a good amount a day for now till it's up to good level then maintain it

200 ug was not enough,

PMRpro profile image
PMRpro in reply toDaisy78

No - it would barely keep a good vit D level up during the winter - in northern climes you can only make vit D from sun between 11am and 3pm from May to September, the sunlight has to strike your skin at a pretty high angle and without any suncream in the way. And less than 10% comes from diet without eating loads of oily fish (8oz every day for example). Foods in Europe are not fortified - only in the USA.

AgedCrone profile image
AgedCrone

Yes my rheumatologist recommended a Vit D oral spray...I got it from Amazon,but I see it's on sale in Holland & Barratt. It comes in two strengths & costs around £8. It did the trick for me & I now use the spray from around November each year & my Vit D level is fine.

Daisy78 profile image
Daisy78 in reply toAgedCrone

Hi Agedcrone

Thank you for your reply, I wish my rheumy had told me this, a friend recently mentioned it to me so I ordered some (same place as you) as my levels are still low after a long while taking it as a tablet

Glad it has done the job for you and keeps your levels good x

Lupiknits profile image
Lupiknits

Thanks to all for letting me know there is a spray. Way back when my very low VitD levels were spotted I had to take some kind of megadose to kick off with. It was like eating two packets of chalk inside a day.

I've since used capsules that are easier to swallow and took a much larger dose after seeing Pro's advice some time ago.

I find it so hard to eat and swallow just getting my meds down each day is like a full meal. A spray seems good.

shaunalouise26 profile image
shaunalouise26

If you are on fb join the vitamin D protocol page you will get all the information you need there. Don't take the vitamin D tablets they are full of nasty fillers and not very good. You can buy the oil capsules online amazon etc. Also vitamin D needs to be taken with magnesium and vitamin K2 so that your body utilises the vitamin D effectively. My rheumatologist advice last week is that everyone in the UK should be taking vitamin D supplements there is a big thing about it at the moment and advised my children should take it as well. X

Joy_1 profile image
Joy_1

Hi

Like you I have UCTD.

When I first became unwell my Vit D levels were through the floor. My Rheumatologist put me on 4000IU a day (capsules). Which brought my count up nice and fast.

I now take 2000IU a day, which is my maintenance dose. Any lower and the count starts to dip quickly.

I asked the Prof Rheumatologist what the vit D count should be for those of us with RA and he said "less than 30 is deficient, 30 to 79 = low, above is where we need to be".

I am a food scientist and there is no way we can get this amount from our diet or sitting for limited periods in the sun.

The other rule is that if you are on higher doses you need to spread your intake of tablets across the day so that your gut can absorb the additional vit D adequately.

hope the above helps

Joy

Niccigrace profile image
Niccigrace

I showed the Holland and Barratt spray to rheumatologist and she said it isn't strong enough, not enough would be absorbed and gave me a prescription

chrisj profile image
chrisj

When my vitD level dropped I had to go to hospital for high strength capsules over a period of a few weeks. They wouldnt give me a prescription as they weren't available outside the hospital. Once rheumatology was satisfied the levels were up I was prescribed Adcal and will take them for the rest of my life as my body doesnt make the vitamin any more. Sitting in the sun doesnt work for me

The tablets I have are torpedo shaped and pale orange/brown. Tried the large white chalky ones and struggled as I have primary sjogrens. The dose is 200 I.U. or 750mg in each one and I take 4 of them each day...2 morning, 2 at teatime and so far I've been ok. Not perfect but I dont get as tired or as breathless as I did and I can hold my arms up again long enough to brush my hair, the muscles aches and loss of energy are better than they were. Must be 4 years since the supplement was prescribed

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