Vitamin D

Hi there MrsK

So sorry to hear of your recent muscular problems especially after you were doing so well in reaching 3mgs. Strange thing is that I also developed painful muscles when I was on 3mgs and the rheumatologist said that it was muscle atrophy caused by the steroids but this has now been relieved by gentle massage by a physio. Do hope the high dose Vit D will succeed where the brandy failed! :lol:

LOL

MrsO

I am so sorry that you are in such pain I think you should go back to your consultant and ask for a VitD injection. In my experience it works faster and is more effective that tablets.

I have an injection of 32,000 IU every 2 months or so in addition to 2,000 tablet dose every day from about 2 years. Maintaining a good VitD dose really helps with my restless and painful leg.

Hope you feel better very soon!

Cheers! :bubbly:

Just thought I would let you know that after 5 days of the 40,000 units of Dekristol (Vit D) the aches and pain had subsided by about 50%.

Now after the full course, just one bicep and one thigh muscle still aching.

Blood test shortly and will see what is what and keep you posted.

Thank you to EileenH who helped me understand what was going on and the medic on Oxford who was on Radio 4, the Professor who also explained why people without PMR or GCA and over 60 also needed the test.

Hello mrs k

Good news - it sounds as though Vit D supplementation has passed the test for you and relieved your pain. Do hope the remaining thigh and bicep pain disappears soon too but if it doesn't perhaps you can find a good physio locally who can do some gentle massage - it worked for me as my upper arm pain which I'd had for about 9 months has completely resolved. When I complained of it to the rheumatologist last February he said it was caused by the steroids (muscle atrophy). When I first started the Nordic walking it would niggle slightly for a day or so afterwards but I believe even that exercise has now benefited all of my muscles.

Hope you and Eileen had a great time together last week :hug: :redwine: !!!

MrsO

MrsO - we had a brilliant time thank you. Just it was white wine as both of us have found another steroid side-effect: our beloved red wines just make us feel grotty! :lol: I actually do still drink some of our local red wines from South Tyrol but they are quite light ones - anything of the deep purplish red is an absolute no-no!

EileenH

Hi to you - now there's an interesting one! I can't cope with white wine these days, just too acidic for words, really gives me heartburn. Red's fine unless it's the battery acid type.

Just had a great Indian takeaway for son's birthday, car was covered with frost though so worried about husband's driving. Me; \"How do you get some warmth on the windscreen?\" Husband, crossly, \"How should I know?\" anyway we got home OK with sag dool etc. Lovely. Thank goodness that doesn't upset my innards!

Sun up here and heavy frost again this morning. Looks lovely from indoors>

keep warm everyone, Pam

Hi, My GP was surprised when I requested a blood test for Vit D3 and said 400 iu should be sufficient taken as Ad-cal,my physio recommends

10000 iu at least which I take daily, after 3 weeks I have not felt any improvement but perhaps it too soon to tell I will keep taking the capsules!! and report back I did get the path form and advised not to read too much in magazines etc advice I will ignore Your Aye. Joan T.

Hello everyone,

400IU sounds far too low Crawf. Even 1000IU. Daily requirement is something like 7000IU. I hesitate to give any figures without looking them up because my short term memory is absolutely unreliable. So do look it up on the other thread on Vitamin D which has heaps of info. I'll bump it I can find it.

My last vitamin D test came back within normal levels for Australia but as discussed with the doctor, normal and optimal are different. According to the US norms, ours are far too low. My latest one was 74 nmol/L. The norm in Aus is 51-100 nmol/L whereas the US norm is 125 -200 nmol/L. And once you are classified as having normal levels here you can only get one Vit D test a year on medicare, unless something changes.

Because we'd had such a sunless winter (and still having very few sunny days this spring) I am continuing to supplement so that I can build up a store. I took booster doses 40,000IU twice a week for three weeks and then 5000 per day for another week or two. No ill effects whatsoever. Now I get the middle of the day sun when I can. I think it is the improved Vitamin D levels and the iron supplementation which has caused an increase in energy as my iron levels are normal now. I rarely need to sleep in the day or even lie down, unless I have really badly overdone things.

I'm still managing without steroids, the PMR is maybe a little less severe. It's hard to know because it did get a lot worse after I was dg in July 2010. But some areas - knees and neck have been much better for a few weeks now, but the groin has become worse and I have a partially torn rotator cuff injury and no idea how I did it. It's been x rayed and ultrasounded, now in the fifth week. Wondering if anyone else has injured themselves and not known how it happened and thinks it might be to do with the PMR.

Never know how to finish off but do hope you all are well as of right now and having a good night's sleep. Jill

Hi All

Just an update on my Vit D since my last posting on 25 Oct.

Well after five days on the 40,000 units (taken twice daily at 20,000 per go),

on a scale of 1 to 10 relief 50% after ten days, 95%.

The reading was 20 - it should have been between 48 - 144 in our Hospital Trust Area.

I am now waiting on the result of the second blood test.

Can I say to all of you - ask for and take a Vit D test.

Keep you posted.

When I last had my vit D done it was just over 20 and I was told it was \"normal\"! I didn't think it was optimal but I'm interested Gateshead has changed it so drastically. Have you asked \"the guys\" about this?

EileenH

I have asked the 'guys' and am waiting answer, but I guess it is going to be like the other markers (ESR & CRP). Different Trusts.

Off the record, I was told (not by the 'guys'- but a chemist) that Vit D is pricey imported from Germany (enuff said). Maybe that is why the medic in Oxfordshire could not get his PCT to pay for it. Unless it was prescribed at Consultant level.

Our PCT had only changed its policy from Consultant to Primary care level two months ago and I was the first to benefit at GP level and my GP was unaware of the change until we asked my Consultant.

I count myself fortunate with my GP and Consultant.

Eileen, its chucking it down with snow and we also have the dreaded Black Ice, the wind is forecast to change from, North East = snow from Scandanavia to North = straight from the Steppes and no high ground between those Steppes and us on the North East Coast of the UK and that is all the way down to Kent.

Village not cut off - because one of the big grit store is near us, so both hill roads are gritted. One downside - they have a 24 hour shift and as you know the cottage sits in the fork. Everything rattles on the side of the cottage you slept in.

However its meant I have now got a PMR&GCA UK North East Support Newsletter prepared and it should be with you within the next ten days.

Good ski-ing.

Mavis

PS Dee ye wear yur 'fur coat with nee knickers'?

(Geordie expression for describing someone who thinks they are posh in case the rest of you are wondering).

Well I promised an update and here it is.

The Blood test taken on 25th November showed an improvement in the Vit D level, but was still not up to 48 (which is the lowest level see previous post - and Eileen I am still awaiting answer). However the Lab had said before more Vit D was prescribed they wanted a calcium test done. I nearly fell off the Chair in the GPs.

I said - you must be kidding, they had the blood there in front of them why did they not do the test then - I then discovered the GP paid for the blood tests - I told him what I would say to the hospital - he laughed but said he could not say that.

He looked up previous tests and calcium markers had not changed.

However, as I am a first (see previous post) he wanted to chat to consultant - result am back on 40000 units per day for next seven days - then another blood test.

However I do have another problem like mysterious leg pains - but will answer that under leg pain - when I get result of initial spine, lumber and leg x ray.

I now reckon I owe the NHS money.

Haven't had the fur coat out yet to need to decide what to wear under it, but I certainly don't consider myself posh!!!! Should have taken it to the south though - not for outside but the room we were in was on the lowest floor opening to the garden and the only heating was air-con so always draughty. It was hovering around freezing outside and the heating struggled to achieve 18C!!

Interesting figures though - suggests all the scares about taking a big dose of vit D are a bit OTT since the risk is at high blood levels rather than at high intake levels.

As to the mysterious leg pains - what like? Before we went to the deep south I'd had a dragging sort of pain down the line of the sciatic nerve, particularly bad down the outside of my left calf and into the ankle which started up after walking for about 5 mins. Down there I was on a totally gluten-free diet (our host was a doctor whose English leaves a bit to be desired and didn't get the bit about small amounts of wheat being fine!) and I now realise the leg pain has about gone despite walking miles down there. Coincidentally, I met a lovely gentleman at a Rotarian dinner there who is coeliac and it presented as one leg getting tired quicker than the other when he was out walking! Gluten-free solved the problem. It is autoimmune too. Mysteriouser and mysteriouser!

Hope your weather is better - and you!

EileenH

Up date on Vitamin D

Result back from Consultant.

Every three months - seven days of 40000 units.

Just finished the seven days and the only ache is the normal one - the one I cannot get rid of at all - backache. Roll On the day I can get down to 1mg and then perhaps, as the Rheumy says, it will take a hike.

So what do I recommend, anyone over 60, irrespective of having PMR, GCA or anything else - push for a Vit D test if you have all over aches and pains.

One happy bunny.

Brilliant news Mrs K :magic:

Lizzie