Double dose of pred!!

Got one!  Thought for a moment it was Friday.  What a twit!  

Didn't know I could take pred and vit D together.

so we van take vitD with pred, is the the same with calcium and magnesium please.

Pred and calcium shouldn't be taken too close - so if your vit D is in combination with calcium no, you're quite right, you shouldn't take it with pred. But if it is just vit D it won't matter. You do keep them in their original packaging don't you? You can't confuse my calcium/vit D tablets with pred - they're about 2 cm across!

Vit D only - milk for calcium, my favourite drink.  

Pred 5 is tiny and vit D is only slightly bigger.

Is that enough calcium Constance? When on pred we need more because the pred makes our body get rid of more in the urine - having more floating around the body makes it easier for the bones to get enough. That is why most of us take calcium/vit D supplements. They aren't entirely essential - as MrsO will prove since no-one ever gave her any and her bones were fine.

Eileen, Mrs O!  Well that was a disappointing day.  I expected to be pain free and feeling fit.  Didn't happen!  Still had a load of pain in hips and ankles.  At least I know now that it can't be PMR.  Must be RA!  All it did was make me feel terribly tired all day.

Off pred by Christmas????

No. That is far too fast for anyone to get from 5mg to zero.

No if's buts or whatevers...

Oh, how disappointing!  But you could still feel the benefit of having taken the extra Pred today when you add your usual daily dose tomorrow perhaps.

It was a joke really.  I have no intention of stopping the DSNS method - I'm not stupid!  (No comments, please)!

Strangely enough my hips and ankles don't hurt so much this morning (talk about delayed action), but shoulders and arms do, so I know the PMR is still around.

Have a great weekend.  C.

Vit D protects your bones.  Might have started too late in my case, I'm 76.

Not only for PMR sufferers but for the whole population.

Before you are diagnosed with PMR,  a Vit D test is given as an exclusion test. (BSR Guidelines on Diagnosis and Treatment of PMR)

The reason for this exclusion test is that Vit D deficiency presents with  aches and pains, exactly like PMR * .

So if that test comes back and you are deficient, before they go any further and give you pred, they give you high (up to 40,000 units of Dekristol (pur Vit D) per day for at least 10 days.  If the aches and pains have gone, it was not PMR.   If the deficiency is corrected and the aches and pains are still there  - yup they now try pred.

Nearly everyone in the UK is Vit d deficient, kids are presenting with rickets, older people don't make as much.  And in other countries is you live North of  the latitidue of Turin, you do not get much sun. 

During the war and up till the late 50's early 60's all flour in the UK  was fortified with Vit D. The USA still fortifies their flour.  

Then along comes 'slip, slap and slop'  - ok you need slip, slap and slop, but you also need time in the sun with no slip slap and slop  - 20 mins max if between 12 and 2pm (when sun is hottest).

Older people don't sit in the sun as much, they tend to seek shade.

* How do I know about the aches and pains just like PMR, How do I know, because I was 2 years into GCA only, when along came aches and pains - off to GP who said PMR,  I fell off the chair laughing, I was still on 15mg per day.   I said 'No chance' how about a Vit D test, yes deficient as low as 48 and it took 10 days at a high dose and then another blood test and then another 10 days at half the original dose.  Since then I take a maintenance dose of 1000 units per day.

Vit D deficiency can actually cause similar symptoms to PMR and is one of the things that should be checked in the exclusion diagnosis. 

Vit D - or the lack of it - is implicated in a whole range of things and tiredness is said to be one sign. It is often found in patients with an autoimmune disorder although whether that is cause or effect isn't known. Vit D is needed in the body to aid a lot of processes including absorbing calcium and building bone. Vitamin D also helps regulate the immune system and the neuromuscular system. and also plays major roles in the life cycle of human cells.

It used to be felt that a level of over 20 ng/ml was adequate but more recent advice is that a level of at least 50ng/ml is better - Gateshead Trust recommends 75-150 ng/ml. Very high levels (around 200) are not good for you so if you are given a high dose supplement then it should be checked afterwards.

You hear a lot of gumpf about vit D - including that a good diet will supply all you need. WRONG! You cannot get more than about 10% of your needs from diet - unless you are eating large amounts of oily fish every day - a pound of wild salmon (farmed salmon has far less in it so you would need more), or something like 17 eggs or pounds and pounds of mushrooms which are about the only vegetables with vit D! Obviously that isn't either sensible or going to happen - I'd better explain that as someone pooh-poohed me for making stupid recommendations!

You CAN make vit D from being in the sun - but as you age the "factory" slows down its production so that at 70 you make a quarter as much as you did at 20. But even that is only when you live far enough south for the sun to strike your skin at a high enough angle. That is between 11am and 3pm from May to September in the south of the UK. Further north - even less. And what have we been told for the last 30 years? Don't go out in the midday sun, cover up, use sun cream - Factor 8 reduces the amount of vit D made by over 90%. Even having a suntan reduces the amount you can make.

Here where I live in northern Italy, supposedly about the latitude where we can make enough vit D from sun all year, it is thought over 80% are vit D deficient and even we are told to take 2,000 IU daily throughout the winter to keep our stocks up. 

Seems you should have been taking vit D all along!

wish someone had tried that first with me before saying yep you have pmr.

It was only 3months ago some one decided oh we will test your VitD, guess what i had nil VitD so on a course of 20,000 ius  twice 1 day for 8 weeks , now mine is going up.

Nobody tells us this, i was born in 1950 after the warso to speak, and food was still rationed and our parents did there best we grew our own vegs, had national dried milk, no sugur still on coupans for that, cod liver oil, and some horrible brown thick stuff vile, ohhhhhh can still taste it.

Ar school milk was given out and some more cod liver oil before having a sleep on a camp bed.lol

Mags, "horrible brown thick stuff vile".​  You must be referring to malt - I really loved it!  In fact, I made a chocolate cake with malted powder to take to my friend's milestone birthday party on Monday!

​"having a sleep on a camp bed".  That has really brought back memories for me when I was a three-year-old and at nursery where the nurses (well they were dressed in typical nurse's uniforms) used to put us on camp beds in the fresh air for our afternoon nap, covered in grey army-type blankets if it was cold.

Ahhhhhh Malt, I loved it, wish I had sat next to you at school, I would have swapped the milk for your Malt.

Margaret,  you are not the only one who did not get the Vit D exclusion test. That isi why we keep on repeating 'download the guidelines on Treatment and Diagnosis of both PMR & GCA from any of the pmr gca, NHS and BSR websites.   My mantra as Eileen says, 'Knowledge is Power.' 

 

You know - I'm so glad I'm that tiny bit younger than you and missed all these delights!

Was thinking about Minadex earlier on though. 

ohhhhhh i remenber that as well, infact if we were cold at home in bed my dad used his old army coat as a blanket plus the oven shelf wrapped up. cold but good memories.lol

please excuse my ignorance but what does malt powder do for cakes. yes thats the stuff

 

please whats Minadex

You don't know what minadex is?  Thought everybody's mother had it in the cupboard!

It was an orange-flavoured vitamin and iron tonic that was used for children when they were a bit run down. That was the nearest I got to cod-liver oil! It was discontinued in about 2012 apparently.

mum used to give sanatogen wine for us, its not alcholic tho, and she did give us an orange fortified drink but cannot remeber the name, i dont think it was minadex

Mindadex and Minatone, I disliked them both.   every Spring ugh.

the tone bit rings a bell for the name of the  drink Eileen was speaking off but its that long ago, us oldies forget, maybe brain fog as well

I loved it too.  Can you still get it?

Eileen, I would love to know what percentage of people diagnosed with PMR actually had their vitamin D tested before diagnosis. My rheumatologist told me they did not normally check vitamin D, even though I had pages of other blood tests. You would have thought it was common sense to check vit D when a lot of the symptoms are similar. Perhaps common sense does not come into it! 

The malt is supposed to add a creaminess to the chocolate sponge, and it adds flavour to the filling/topping.

Yes, I loved Minadex, too!  I also seem to remember something called Anadex which was added to the Minadex via a little dropper? 

The only thing I absolutely hated was the regular Saturday night drink of senna pods - double yuk!

my mouth is watering at the thought of chocolate cake, i might even forget the bad taste of malt for a slice of it. lol

Our Saturday night was a piece of chocholate laxative, and boy did we move next morning.

Hi I had my vitamin d tested although I was taking vitamin d supplements as I had vit d deficiency a few years ago and yes symptoms are very similar and that's what I mentioned to the GP my levels came back fine so was referred to rheumatoigist after 3 weeks on pred pmr has been confirmed

regards molly

Very very few I suspect. Mine wasn't checked until I asked for it - and it was 21! Even then, I had to deal with it myself - good old H&B! And in my case it can't be lack of sun as, while I don't "sunbathe" I do happily go out in the midday sun (without sunscreen but with a hat on) and have a shirt handy to put on if I think I may get burnt. I consciously seek the shady side of the street too. 

Getting my level up to well over 50 didn't make much difference to my symptoms at the time. Suppose it is about time to get it checked again - but I have to pay for it...

I mentioned above - discontinued in 2012. There is a similar tasting version with just vitamins, no iron, Minavex.

Is there a difference between Vit D and D3?

Vit D comes as D2 or ergocalciferol, made by plants, and D3 or cholecalciferol. D3 is the natural form that the body makes from sunlight. Some people claim that D3 is better, studies show there is little difference.

Thanks Eileen

 

Can you buy D3, and if so how much do you take.

When you get vit D supplements they are almost always D3, although D2 is made from plants so used by vegans and some vegetarians. 

How much you take depends on what your blood vit D level is - if it is very low you need higher doses but it must be measured first. Normally they give us 800 IU in our calcium/vit D supplements but the recommendation here where I live is 2,000 IU during the winter at least. During the summer theoretically we would get it from exposure to sun - but as we've discussed that doesn't always happen. I think lodger takes 1,000 IU per day as a maintenance dose as it's been accepted she isn't making any from sun.

I take 800 IU a day I currently have a reading of 62. I was 26 initially.

my last reading was 82.5 i think, so i will check my level i am taking as i dont make it from the sun as well, when you say lodger takes 1,000 iu per day as a maintence does this go up in winter, or does she keep to the same maintenance all year plus what she eats. Thank you as i need to keep on top of this and will have another word with my doctor.

Eileen my level was so high as the doctor had me on the 20,000 and then we stopped after 8 weeks

Margaret you are well within the normal level, you don't want to overdo vit D.

That's right where it should be according to Gateshead Trust - above 75. Long way to go to being too high.

I really don't know if lodger changes her dose in winter - you'd have to ask her.

many thanks

No, I don't change my dose in the winter, I just take the 1000u per day.

I would have to be over 140 before Gateshead Trust would considered it too high. 

What I am unsure about is  does  every Trust uses the same scale?

I have noticed on the internet that numerous  local Trusts have now got pages on Vit D and  the information is pretty comprehensive and all of them list symptoms of deficiency which include 'myalgia'.

I never want those aches and pains again.  I realised then, sort of, what people with PMR were having to deal with. (Remember I was GCA only).

https://patient.info/doctor/vitamin-d-deficiency-including-osteomalacia-and-rickets-pro   this link to Vit D on this site whilst written for professionals and does have a lot of jargon is brilliant for information and I find this site trustworthy.

Your patient.info link says:

"Serum 25-OHD concentrations between 50-75 nmol/I are considered healthy but optimal vitamin D status is when serum concentrations of 25-OHD are 75 nmol/L (30 micrograms/L) or more"

I suspect there are still regions who lag behind on the "healthy" range - but pretty well everwhere accepts that you need a lot more than they were saying just a couple of years ago. 

What gets me mad, is that 'myalgia' or 'muscle and bone ache' is listed on every site that talks about symptoms of Vit D deficiency and yet they still diagnose any illness that ends in 'myalgia' without doing that Vit D test.

 

this is really interesting and i will be speaking to my doctior regarding this, as i would probably not have had to go on pred if they had  had my ViitD checcked years ago.

What about Dr Bingham surley she sould have asked me about my VitD before i told her.