Forum

UV light and Vitamin D

Does anyone else find that UV light exposure relieves many of their symptoms? I find it really helps me, especially in the winter months, when I try to use a sunlamp twice a week. I’ve been taking very high dosage and good quality vitamin D3 tablets for years, but I can’t say I’ve felt better from them. The UV light, however, makes me feel a lot better within half an hour. Anyone else had a similar experience?

Andrew777,

I know I feel much better being actually outside in a good blast of sunshine with the sun actually shining on me. I’ve never used a sun lamp though. Do you have your own lamp?

I take 2 ‘super strength vitamin D3 tablets’ a day but suspect I could/should (?) take more. I’m probably wrong but I’ve never expected them to make me feel better just to stop things getting worse. How many do you take?

Apologies for all the questions!

Tippy

Tippy

You can overdose on Vitamin D. Really you should either have your level tested before you start, then take them according to the dose a doctor (preferably a neurologist who believes in persons with MS taking high doses) suggests, or have your blood tested now, while you’re taking the high dose just to make sure you’re not overdoing it. (Which option I would probably go for.)

Sue

I’ve actually got a uv light box I bought years ago I’ve not used it in quite a while I shall get it out tomorrow and give it ago I’ll report back and let you know how I get on, I never feel good every day so shall be interested in how I feel afterwards.

Ann x

Hi,yes I have a small, low power uv lamp which I sit in front of for an hour, twice a week between December and April. In the summer I make sure I get plenty of sun. I always feel better in the summer. I take 5000 in of d3 a day in the winter, and a lot less throughout the rest of the year. There was a programme on Radio 4 a few years ago about several different clinical trials with d3. The telling thing was that, when asked, all the doctors involved admitted that they had began taking vitamin d themselves. I’ve been reading about some more recent studies, and there’s some indication that it’s the uv light itself, and not so much the d3, that helps to regulate the autoimmune system.

Sssue, following being diagnosed my Neuro advised vitamin D as my levels were very low. Have since moved so with different Neuro (who is aware what I’m taking) suggested taking more but I haven’t had a blood test (or anything else for that matter) since the original tests 6 years ago. Think I’ll have a chat with my MS Nurse on Monday and if she agrees have a blood test at GP’s.

Thanks for your advice, you’re so knowledgeable!

Tippy

I must admit, I was taking high dose Vitamin D on neurologists advice for quite a long time before I had my levels tested …

In reply to Andrew777, I too, think the uv sunlamps helps me in the winter months and the sunshine in summer months and Vitamin D3, I take 4000 IU. Are you on any other MS Meds, e.g. interferon, oral, infusions.

In reply to Anon. I’ve recently tapered off all other meds, as I was finding the side effects from those just as bad as the condition. I’m afraid some doctors only ever consider pills. But these can really overload your body. I’ve always followed life style guidelines for ms alongside the medication, and now hope to control things that way.

Saw my neuro just 2 days ago he checked my D3 levels, they were 124 nmol/l which he was happy with. However when I mentioned that a few a months ago I taken into hospital with kidney stones he suggested cutting back to 2000iu daily, something that the urologist also mentioned at the time ! I take 5000iu daily. Its a specific blood test for D3, I believe it’s the 25(OH)D test that is needed, its not the same test for D deficiency.

In reply to Andrew777, I too am finding the meds just as bad as the ms. I’m tapering off drug, yes they are too overpowering. I too follow lifestyle and diet protocol of ms…vegetables and Vitamin D3! Hope so much I can control things that way.

This is an interesting thread. When I was told I probably had ms in March I asked the consultant, as I guess every one does, is there anything I can do to stop myself converting to ms, ie diet etc (having never smoked, always exercised and having stopped drinking dec 16 as the resulting migraines outweighed the pleasure from a half glass of wine). He stated I could try taking vitamin D, he make it quite clear that there was no proven link as yet, just a theory. He also said government guidelines state everyone in the U.K. should take supplementary vit d throughout the winter and if you are non white you should take it all year round. I thought about this, even thou I have worked on construction sites (so outside for 12 hours a day and this was before you had to wear full body hi vis) for 10 odd years and now although I have changed to the design side of things (so office based) I still get outside through my horse riding, I wouldn’t/ won’t be getting much vit d because I always slap on a high factor suncream and always wear a helmet. So I’ve started taking the vit d. I was diagnosed clinically definite September, but I didn’t have further tests between the March and September, just that not all results had come back or they hadn’t been reviewed by the March. Interestingly, December 17 scan showed no new lesions, so could be coincidence or it may be the vit d.

one thing that is frustrating is that they don’t test your d3 levels at time of diagnosis, that would be interesting, so well done this forum another thing on the list to ask go when I see him next!

just a word of caution, I have read that too much vit d can cause kidney stones - not sure how?

It’s because of calcium. I think maybe vitamin D increases the absorption of calcium. And often people take calcium together with Vitamin D. Too much calcium causes kidney stones. Which would be why jactac had to reduce the amount of Vit D because of kidney stones. Sue

1 Like

Ssue, I had a chat with my MS Nurse about how much Vitamin D3 I should be taking & should I have another blood test. Answer was no requirement for further blood test and as I don’t have problems with my kidneys or liver I can up my dose by one to to 3 x 1000iu Vitamin D super strength rather than 2. Feel more relaxed now I’ve checked this all out. Thanks for your input!

Tippy x

My partner is a kidney patient and yes, Vit D also increases the amount of calcium in your body. This is why regular blood tests are important and why it affects your kidneys and why you feel woozy on it.

for patients on dialysis, the process itself, while it cleans your blood, can be too harsh and leach out “good” toxins causing muscle weakness. But as any fule know, or even can gooogle, too much vit D can also make you ill! So please please, take with the advice of health professional.

If you are self prescribing Vitamin d you should be having regular blood tests. When I was diagnosed with very low Vit d levels I was prescribed 20000iu daily along with Vit K2. I believe this helps the vit d reach the right places. I have also reduced my dairy intake and calcium fortified foods (just in case) as I currently take 10000iu daily along with K2 and magnesium. My levels are checked by my gp &/or my neurologist around every 6 months and sit at the top end of the ‘within normal levels’. My neurologist is fine with my levels but I have met a gp who advised me to stop immediately, which I obviously ignored! I was having issues with my arm and he thought it was a side effect of the vit d due to the high dosage. Thankfully, I saw my neuro a couple of weeks later who gave me oral steroids for a small relapse and my arm got better. Vitamin d has had a lot of national press in the last couple of years so most gps should be more aware of its effectiveness to treat other conditions too now. Which I am sure they are updated about. Just remember Vitamin K & Vitamin D go hand in hand together and get checked every 6 months. Sharon x

Is anyone successful treating MS with Viamins, e.g. D3, B12 and minerals? I am Gluten free and Dairy free. Going off Rebif. Does Anyone have any recommendations or comments? The MS drugs are just as bad as my MS symptons. I’m taking Andrew 777’s advice and do believe UV sun lamp for the winter months helps and sunshine in summer months.

I am dairy free and hardly ever eat red meat nowadays, but I still take my DMDs (Aubagio) as well as my vitamin d, k2 and magnesium. Sharon

Mastinson,

I used to take Rebif myself and was on verge on giving up on meds all together because the side effects were just as bad as the MS. But my neuro switched me to Gileyna. I’ve been taking that for two years and I luckily have had zero side effects. I used to take Vitamin D but now I make sure I get plenty of sunshine, even in the winter, and I have cut my D3 down significantly.

Well had need to visit my GP recently and whilst there asked if my vitamin D level could be checked. I explained that neuro had said that vit D may help my ms but hadn’t done a blood test. The GP said it was expensive, when I asked how much he said he would do the test. Well the result came back that I was clinically insufficient. So now on 50,000 units a week for six weeks, after that back to 1000units a day. Took first lot last week no trouble, this week however have been ill. Phoned doctor and advised to take again next week and see how it goes. Could be coincidence,ie I might have picked up a stomach bug but I did read that a rare side effect is stomach issues. anyone else had any problems when on the loading dose?