Really sorry .....

[Therealsue]

... to ask a question that's probably been asked a zillion times, but just how much Vitamin D should I be taking. For many years (way before PMR) I've taken 1000IU daily and clearly that hasn't been enough because the battery of tests for diagnosis showed low levels. So the rheumatologist gave me 20,000IU to take three times a week for two weeks, which i did a couple of weeks ago, so do I go up to 2000/3000/4000 a day and should I split the dose between lunchtime and evening and take the calcium with it? The bone scan showed osteoporosis T 2.5) in my spine and osteopenia (T2.1) in my hips. I'm so fed up with all of this I could cry. I've always tried to be so healthy and thought I was and now I feel like I'm falling apart and I'm only just 60. Thank you for listening and sorry for the self-indulgent moan - just having a bad day.

[HeronNS]

It really depends on the individual. Are you going to get a followup test for your Vitamin D level to see how the extra dose worked? It's very hard to overdose on it unless you have an underlying condition which causes high level (I do). When I started the PMR/pred journey my doctor asked me about my Vitamin D supplements. I told her 1000 a day, plus whatever was included in the calcium I was also already taking. She told me to double the dose. I did that, and also took cod liver oil, mostly because I wanted the form of Vitamin A which is in the oil, not for the D. But had to stop taking all D supplements after high level found. I don't think I was ever taking more than 4000 IU from all sources and this is actually considered well within the safe area. Normally the body will only activate the D it needs - which is why you don't overdose when you get sunshine in the summer.

[PMRpro Ambassador]

So how low was your vit D? Bet it wasn't as low as my husband's last week: 7!!!! This is a man who is out every day after 11am walking in the sun with no sunscreen on and we live in northern Italy - where technically we can make vit D in skin all year round. So much for that theory!

However - low vit D is common in people with autoimmune disorders and PMR is almost certainly an autoimmune disorder.It isn't clear though if it is cause or effect, but it happens.

I'd ask for the level to be checked again - if patients are very low they usual scheme is 20,000 IU three times per week for 8 weeks - much longer than you were given. You might need some more of the very high dose stuff to get you up to a decent level - and then it needs checking again maybe 6 months later, sometimes it can fall a lot again.

Then, the recommendation here in northern Italy where we are supposed to get a decent amount from sun is 2,000 IU/day throughout the winter - they reckon 80% of the population is deficient. Take your calcium and vit D supplement which is usually 800 IU/day and then add maybe another 2,000 IU (H&B do 1,000 IU tablets which are tiny and easy to take, Boots are only 500 and big, both reasonable price though). How much you need will depend a bit on how effective your rheumy's intervention has been. However - if you are worried, take more. Up to 5,000 IU is fine - and you would have to take enormous amounts to overdose on vit D, 10,000 IU per day for months and months at least.

Given your dexascan result - I'm assuming that is why you had the vit D checked and boosted - have you also been given alendronic acid? If so, don't take it until you know your vit D level is now OK because there is no point taking it if either vit D or calcium levels are low. It won't work.

Don't be upset - we all get days like that. I had a lot of them 4 years ago and used to sit in my GP surgery in tears - she kept telling me it would be fine. It was. In a year you will look back and see how far you have come - everyone does. And if you can't moan and wail here - where can you?

[Therealsue]

Thank you both. I'm not sure how low the vitamin D was and I've given the test results to the consultant. My GP surgery are refusing to retest even though the consultant has requested it, but I didn't know that Alendronic acid won't work unless your levels are normal and I've been given that too and I've already taken two doses. I have been taking 4000IU per day since coming off the mega doses and I've also bought some 5000IU tabs but they might be a bit steep. I saw the consultant at the local private hospital but she would have been the one I'd have seen at my local hospital if the GP had been certain that I could have been seen quickly which she thought was important. I have a telephone appointment with the GP on Thursday, so I'll arm myself with the ammunition about the AA and hope that I can get it tested. (The Rheumy wanted a full blood test and U's and E's too as well as ESR, CRP and Vit D, but the surgery will only do the inflammatory markers and nothing else as they say I've had full bloods done recently and they'll only test for the condition that I'm being treated for even though they have a letter detailing the bone scan results. And we are supposed to avoid stress!!

[HeronNS in reply to Therealsue]

I don't know what it is about the D test. When I asked to be retested my doctor said the lab would not redo the test so soon (it would have been six months were I taking the form in then, but in fact I just get my form for next visit and get the tests done nearly three months later, so then she agreed). Frankly I can understand not having the test redone if you were just having it done to check on reasonably normal levels, but if someone is presenting with either very low or very high levels you'd think it'd be important to make sure any interventions are having the desired effect, especially as D is so important to our health.

[PMRpro Ambassador in reply to HeronNS]

Exactly - but part of it in the UK (probably for you too) is cost. One friend was told that she couldn't have it done as it is SOOOOO expensive, £200 said the GP. A lab in the Midlands of England do it for the NHS and they also do it privately for Joe Public if they want it - the maximum cost is £28 for the UK, £33 for overseas. It is £23 for UK bulk orders of the test card which is what the NHS would use at worst and you could get together with friends!

vitamindtest.org.uk/index.html

Therealsue: As for the GP refusing to do the monitoring your consultant asked for - that would trigger a complaint from me and definitely a letter/email to the consultant. I agree with the consultant that a FBC and U+Es are needed - you are on pred and they can change them. Not for the GP to quibble.

[HeronNS in reply to PMRpro]

I understand about costs. I think Vitamin D level testing became sort of "fashionable" a few years ago so they really cracked down on it here. I won't ask for further followup if my levels are ok next time, but I really need to know - if they were so high at the end of last winter and I hadn't found out and continued with my intake, plus summer sun, what would that have done? I found it interesting that as soon as I dropped the Vitamin D my iron increased. Now that I'm taking calcium +D again, the iron has stayed the same, in spite of my being much better about remembering to take the iron. There is something going on, and if my doctor doesn't care enough to monitor it I do have to keep asking (I guess I'm becoming, what did you call it? a heart sink patient! Haha.)

[PMRpro Ambassador in reply to HeronNS]

I can think of worse ones of our acquaintance...