Vitamin D

Thank you Lizzie Ellen. Still fairly free from pain. Had a surpise visit at lunchtime from grandson N. 2. It is his birthday, and I believe he could be 32 or 33 ?...How the years fly past !....He sat doen to bacon and egg (sunnyside up..) on toast, and a nice cup of tea. Gave him his card ( which I made... with contents...(which made him ) and grandad grumble...(not really...) Grandson is lucky to be alive, as he had a terrible fall off his bicycle and crashed into the hard tarmac of the road. Now, he is schizofrenic, but kept going with medication. If you have seen \" A beautiful mind \" that is the story. He plays the guitar so beautifully. He played Beethoven's Moonlight sonata and moved me to tears. He has such feelings when he plays. Still takes lessons, helped by grants for the disabled. It makes me so sad that he will never be well. So, here we are, not only with our problem, but also I wonder how many other problems we share concerning families and friends ? It does not help us with our aim of having a free from stress life, so that we can manage PMR a little better ?! ! Any views on the subject ? ( Please do not nag me too much....my husband does it so well.... ) Love to all. :love: Granny Moss

Dear Granny Moss - reading about your poor grandson who although suffering from schizophrenia plays the guitar so beautifully made me feel quite emotional. I am sure with his problems he is all the more special to you and he is blessed to have such a wonderful Grandma too.

There's no way you will ever experience nagging on this forum - I'm sure I speak for everyone when I say we are in absolute awe of Granny Moss and wish that we would be the same when we are 87!

As for having a \"stress-free life in order to manage our PMR better\", that's a difficult one because stressful situations will crop up however we try to avoid them. But we should avoid such stresses as worrying about our predicament with PMR and instead learn to 'go with the flow', not put too much activity in our day at least whilst the inflammation is getting under control and above all try and relax - I am finding my Tai Chi class is the best for relaxation as it involves gentle exercise and controlled breathing, plus some good exercise for the brain in trying to remember the different moves in what is called the Form. The eldest member of our class is 85 and she is brilliant.

I do hope you have another comfortable \"no pain\" day tomorrow. :rose:

Love,

MrsO

TV medical programme on German telly tonight had an article about vit D deficiency. The only one of 5 residents of northern Germany (which has a similar sun-record to the UK) to have an anywhere near acceptable vit D level when tested was a student who had just spent 6 months in Spain! 8) :lol: They were put onto high dose capsules for 3 months and have just been checked again - the lady whose level was 4 whatever the units are had now achieved 37 - still low.

The biggest new piece of info I heard was that the Robert Koch institute in Germany has done a large-scale survey on thousands of kids and found that 90% of German children between 3 and 17 are seriously vit D deficient. Another group has established you are at a 40% increased chance of developing breast cancer if you are vit D deficient and there is now considerable good evidence of its implications in loads of other diseases including rheumatism and arthritis and other autoimmune diseases. You need a couple of herring, a pound of mushrooms or 17 eggs to get even near the amount you need per day. The Scandinavian countries have dealt with the problem by forcing the food manufacturers to fortify milk and cereals etc to an appropriate level - result no vit D deficiency now.

And the orthopaedic specialist said quite categorically that if you are taking any of the anti-osteoporosis drugs without your vit D level being sorted out to an acceptable level first - they are a waste of time, they cannot work unless the vit D level is high enough. So if you haven't had it checked - ask your GP - GET IT DONE! The test costs about £25 so it's not going to break the PCT bank especially given the number of PMR patients any single GP is likely to have on their books (not many!).

And - now where was it I saw that Cancer Research UK is to change its mantra to \"don't get left red at the end of the day - but 15 to 20 mins in the sun without sunscreen is good for you\"! If it were a government I'd be hearing the word U-turn.

EileenH

Hi mrs k

As I mentioned in my post under \"not another autoimmune disease\" yesterday, I have now checked back with the receptionist at the surgery and my Vit D level is actually 54nmol, happily slightly higher than I remembered.

However, the interesting bit: as the receptionist was relaying my results she read out the words \"borderline deficiency\" adding that the normal range is between 25(!!!) and 120.

How can the normal range be classed as from between 25 and 120 if my reading of 54 is described as \"borderline deficiency\" and it begs the question why did my GP tell me my reading was \"ok\"?......cost of prescribing a supplement maybe?

A recent Press article stated that an optimum result should be 80nmol.

Will still raise this with the GP again at my next appointment, especially as I have now discovered that people with CKD are more than likely to have low Vit D levels. Although we cannot expect our GPs to know everything, when the Path Lab puts in black and white \"borderline deficiency\", then I feel he is ignoring what's in front of him! I will ask him if those words should be ignored when I suffer from a painful inflammatory disease, have osteopenia caused by the steroids and chronic kidney disease, all known to benefit from Vit D supplementation if needed.

Meanwhile, I will stick to my oily fish 3 x a week, plenty of eggs and mushrooms!

I guess from your experience and now from what I have just been told, if everyone on the forum had their Vit D levels checked, this thread could go on and on!

Happy days!

MrsO :lol:

Hello everyone -

Just thought I would report my experience of Vitamin D levels.

I had been doing some research into Multiple Sclerosis (another autoimmune condition) for a friend. A Dr. in Australia (an expert for MS) recommends a Vitamin D level of at least 150 nmol/l for patients with this condition and says that higher levels are not toxic.

Anyway - not having had my Vit D levels measured - I bought some Vit D3 capsules (2000 IU) and took them for just a week before having my Vit D measured. The Vit D result for me was 124 nmol/l. When I saw my rheumatologist the next day she said that 124 nmol/l was a good level but that I should not continue the supplements as I risked reaching a possibly toxic level of Vit D - generally considered by the labs in the hospital here to be 200 nmol/l. They also consider less than 30 nmol/l to be an insufficiency.

I now just take a supplementary tablet about once a week - rather than every day - though I shan't bother in summer when I can get plenty of sun.

I bought the D3 supplement on line and it was very cheap - about £10 for 180 capsules.

Cheers - purplecat.

Thanks for that Mrs O..... hoping that within the bloods done today that when I see doc a week Monday I can ask about Vit D levels because when she asked me to have bloods done told me she was screening for 'everything'!!! One presumes vit D levels included :roll: :roll:

The more I read on this site the more I realise I am going to have to seriously educate myself in order to be coherent and 'educated' when consulting health professionals so I can base my treatment on informed decisions and 'argue' with facts and figures to hand :lol:

Actually it has been suggested by my sister in law (who plays golf with someone who was diagnosed with PMR and did not respond well to drops in prednisolone and who eventually saw Professor Dasgupta privately and he diagnosed RA NOT PMR) that I go to see Prof Dasgupta to ensure my diagnosis correct given what happened prior to that and why I don't seem to be responding to 20mg. My doc not happy with the PMR diagnosis as she has said for the past 18 months she thought we were looking at RA. I pray the PMR diagnosis is correct as do not want RA and its associated treatment :roll:

50sgirl - it is very difficult to distinguish between late-onset RA and PMR and sometimes it starts as PMR (classic presentation) but later morphs into RA. However - late onset RA is different from the version that younger people get and is generally more benign. In view of the AA and the two \"events\" you report after taking it I would say don't panic yet! It obviously doesn't agree with you and I think those sort of symptoms are of the variety that come under \"stop taking it for now and we'll investigate further\". It will not do any damage to take no more before seeing your GP - ring her and tell her if you have a guilt complex. I would NEVER say that about most drugs, by the way, I would say see the doc first! It is also fairly unusual to get all the muscle symptoms with RA - or at least they are different.

There is an excellent American site by a young woman with RA with loads of info about RA, its diagnosis and treatment. Google ra warrior to get a link. There's a bit of guff but Kelly's own stuff is well researched and generally accurate - if we think the UK is poor at looking out for us, pity the Americans who don't have megabucks to spend on their healthcare.

EileenH

Many thanks Eileen H.... will get onto this tomorrow..... I can use the PM system for future reference :lol:

Really appreciate your support in pointing me in the right direction in order to inform myself.

Hope the skiing going well and you are comfortable :wink: