According to my doctor vitamin Fultium vitamin D3 is no longer recommended for patients with MS. The government recommends that patients who need vitamin D3 as they don’t go out in the sunlight much take vitamin D3 bought from the chemist/Health food shops.
Anyone know why vitamin D3 is no longer recommended for MS patients? I was under the impression that a combination of high dose vitamin D3 and high dose statins, were thought to prevent further deterioration of SPMS, this was what my consultant neurologist told me.
So where did the idea come from suddenly that vitamin D3 isn’t recommended for those with MS?
As far as I know it still is. All the neurologists / MS nurses / Barts blog tell me to take it. An overdose of vitamin D is definitely to be avoided, so it’s best to have your levels checked.
I haven’t seen any update on Barts Blog position, so will keep taking the tablets. Not sure how you can prevent something readily available from sunlight (in summer) and diet anyway.
I’m on the Simvastatin trial (very high dose statin), I also take high dose vit D3, my consultant has never said to stop the D3, in fact he always said the more the better !
I have been advised by MS consultant and Haematologist to take Vit K (MK7 version) alongside the D3 as it aids the correct absorption of the D3, otherwise theres always a chance that you could develop calcium in tissues such as kidneys from a D3 overdose.
Plus D3 should always be taken with meals, again with the Vit K.
I went to collect my usual monthly prescriptions from the pharmacy, that’s my blood pressure medication the Atorvastatin (GPS preferred statin)and the vitamin D tablet it’s once a month one big dose, got home no vitamin D. Checked with my doctors practice online and my vitamin D tablet has been removed from my repeat prescription request list. So I messaged her, and she replied a couple of days later stating what I’ve already said that vitamin D is no longer recommended for people with MS.
It could be those of you who are still taking it have a much more obliging doctor than mine who only has ever given me one months supply of medication at a time in spite of my repeated requests to increase my prescriptions to quarterly ( I remember my mother over 20 years ago being given six months at a time) and my other half on the same blood pressure medication and the same statins has consistently been prescribed three months supply at a time I can only feel that I have been discriminated against and do not understand why! But the vitamin D was originally suggested by my neurologist along with high-dose statins but as I no longer have a neurologist or an MS specialist nurse there is nowhere I can enquire about why I am no longer being prescribed vitamin D!
I’ve just had a look at the NICE guidance for treating people with MS: Multiple sclerosis in adults: management | Guidance | NICE It says in section 1.8.1 ‘Do not offer vitamin D solely for the purpose of treating MS.’ So that’s that. It doesn’t say that vitamin D cannot help, just that GPs should not prescribe it. Most neurologists agree that taking a high dose (5000mg typically, depending on individual needs) is sensible for people with MS. But it seems that we’re expected to pay for our own. To be honest, although I’ve had my vitamin D level checked on the NHS, I’ve always paid for my own. Sue
Hi Sue, It looks like I’m going to have buy my own. Even though last year when my vitamin D levels were checked in November and was found to be on the floor they are perfectly happy for me to run the risk of developing health problems such as osteoporosis further down the line. But the good news is plenty of food that I eat regularly has a contains vitamin D and vitamin K and of course I can always try and get out more in the sunshine.
In your case then, I’d try and argue the case with your GP. You’re not taking the Vitamin D as a preventative measure because of MS, but as a medication due to seriously depleted vitamin D. It’s a different reason to most of us.
Hello DDD. Read your post the other day and thought this will be interesting, as I had just submitted a repeat prescription for vitamin D3. I am pleased to say I picked it today. I only started taking vitamin d3 after my optic neuritis attack, when at that point in time I was classed as CIS and asked the consultant what could I do to prevent me developing MS, he said nothing really, but taking Vitamin D was worth doing. I then started taking vit d which I purchased myself, fast forward approx a year and now unfortunately diagnosed with MS I find myself at a newly diagnosed day, where among other things they discuss vit d. After the day I started thinking to myself, well I’ve been taking vit d but do I need to or am I taking enough. I decide to bring it up at my next gp appointment. Gp less than enthusiastically agrees to test my levels, something along the lines of , well as you have been diagnosed I will but if you had come in off the street I wouldn’t! Result comes back I am insufficient and that’s after I had been taking 1000 units a day and I have outdoor hobbies. Get put on 52000 units a week for I think it was 6 weeks can’t remember and now on maintenance dose of 850, incidentally I top this up with another 1000 myself after reading the overcoming ms book. So, not sure why your gp has done what they have, I do live in a “devolved” part of the uk, so maybe England is different but I’m sure my gp wouldn’t prescribe unless it was recommended- hopefully it’s not because they haven’t read the memo yet!
Absolutely chatterbox where you live in the UK definitely has an affect on what is available, I am in the Greater London area
What my GP doesn’t know is I’ve actually got a secret stash of the Fultium D3, around about six weeks worth, so that gives me six weeks so I can at least have something that’s prescription strength for the time being.
I am currently waiting for a phone call from a pharmacist that works with the neuro rehab team that I was referred to so it’s a specialist team that deal with people with Parkinson’s disease, MS and other neurological conditions I suspect that they will be far better informed than a GP when it comes to MS and drugs therapy.
Incidentally I was told about 30 years ago when I was first diagnosed with MS that they already knew that there might be a link between vitamin D levels and MS as it was thought that people in the southern hemisphere were less likely to develop it and particularly those who grow up there. So to now say that vitamin d is not recommended for people with Multiple Sclerosis doesn’t really sound quite right, how can I long held belief be completely about turned so easily,
I freely admit that I do have a nasty suspicious mind and I have to suspect that this has more to do with the cost then anything else, for example I’ve recently (three months ago) been diagnosed with Type II diabetes, my mother had it 30 years ago my brother has it for 10 years and my sisters’ had it for 14 years in every case they were first prescribed Metformin (although my sister refused it for a long time)I have also been prescribed Metformin it is the cheapest drug on the market probably because it’s been around for such a long time, but I have just attended an education course for people with Type II diabetes and most of the attendees were prescribed Metformin, they gave us all a handbook and it contains a list of drugs that are available for people with Type II diabetes but yet nobody was on any of them, One of my sisters (yes I have more than one) has a friend who is a Type II diabetic and has stopped using this drug and he she has said he is now using injected insulin I don’t think it’s actually insulin but it’s something similar it’s not insulin its self but it is an injectable drug for type II diabetes it was specifically pointed out to us that there was an injectable drug available that NICE have now given permission for (should people meet the right criteria)
I think really as the song said “it’s all about the money money money”