CHAPEL ALLERTON

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Should i be aware of the doctors at chapell allerton when i go, is there something i should know abpout, 

Can anybody tell me how much VitC and Vit D i should take in a day please, as i have got the dreaded cyctist again, my friend thinks too much of these canc ause problemS. mANY THANKS mAGS

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  • Posted

    only heard good feed back for  chapel allerton     dont know about vits though
  • Posted

    If you are eating a decent diet with fruit and veg you shouldn't need any extra vit C - despite what some people will try to tell you. How much vit D depends on your vit D level. But as a rule you need about 2,000 IU per day at least. I take more in the winter.

    Chapel Allerton has a good rheumy department - it was just one lady had a problem that I wanted to know more about. You should have been referred to Sarah Mackie and her team who are superb.

  • Posted

    Hi Margaret,

    I don't know about supplements and cystitis but you can also ask your Dr. for a blood test to see if you have any deficiencies.  Mine does calcium, magnesium, potassium and vitamin D. No point in taking them if you don't need them.  Excess Vit C is just peed out but I think Vit D is stored????

    i understand that many people take vit D because it takes sunlight as well as magnesium to be produced in the body and we don't all get a lot of sunlight.  Sunscreen apparently blocks the ultraviolet so you need to be without it for a short time when you're in the sun.

    Hope you're feeling better soon🌻💐🌺

    Hugs, Diana🌸

    • Posted

      Hi Diana

      Lovely to hear from you, i am learning more and more each day from all you ladies have taken all the info on board, Many thanks

      Take care

      Hugs back Magscool

  • Posted

    margaret

    try this old fashioned remedy, not pleasant but I and others have found it still works.   1 teaspoonful of bi-carb in as little water as possible, repeat twice leaving 4 hours between each dose.  If that does not stop it in its tracks,  Medics for you.

  • Posted

    Sorry - brain wasn't entirely in gear yesterday and MrsMac reminded me.

    Cystitis can be a problem in PMR - and some say it can also be due to pred. Mine was definitely PMR and it did improve a bit at the higher doses of pred! It is very unlikely either vit C or vit D are causing it. We had lots of posts about it a couple of years ago and the general concensus was we should have taken out shares in Tena! I used the smallest size of Tena until last year when the problem suddenly disappeared - I have a couple of packs in the cupboard!

    Vit D is stored in the body. If you are lucky enough to make vit D from sun on your skin then the "factory" switches off after a certain amount has been made but supplements are stored without any limit which is why you should have a vit D test every 6 months to make sure it is staying in the right range - a test in May will show the lowest and in October the highest levels. You NEED to store vit D because it is those stores you will be using over the winter to keep the processes where vit D is essential going.

    If you are having recurrent cystitis problems then ask your doctor about something called irritable bladder or overactive bladder syndrome. You can read more about it here:

    https://patient.info/health/overactive-bladder-syndrome

    which gives some advice about coping with it.

    I realised that it often got worse (and now only happens) when I have been out and about during the day and have drunk far less than I usually do. You will see in that article that drinking too little can be a cause - the urine gets too concentrated and that irritates the bladder wall. In fact what I do is not take my calcium tablets on a day when I am travelling - because that is also something where the excess that wasn't needed for bones is excreted in the urine. It is fine as long as you drink enough but can get to too high a level when the urine is concentrated and it can irritate too.

    Make sure the doctor doesn't hand you antibiotics without doing a urine culture - if it is overactive bladder then abx won't help at all. Drinking more water is a better approach - even though that may sound daft. But if you feel ill and shivery get the GP to send a urine sample for testing.

    • Posted

      Thank you for your help, i have been told my VitD level was nil, and the doctor advised me to take tablets, the last test not so long ago was better, but she said still take Vts, C, D and magnesium.

      She was full of cold and had been up all night with her children who has chickenpox, so by the time we went through how i was on the pred, i forgot to ask her the amounts, really i should look it up, but you ladies are full of unformation and know more so i just wanted to know if i was taking too much. Talking of the colour of urine mine has been orange that dark and thats when it started, 4 500ml bottle of water i am drinking and i wondered if i was taking too much.

      Many thanksbiggrin Going to see my grandson Rory today and the sun is shinning so what more does a girl want.

      Take care glad to have you back.

       

    • Posted

      If your vit D level is that low you should have been put on high dose vit D for about 2 months - high dose really means about 60,000 units a week and requires a special prescription. I took 5,000 IU/day by using five H&B 25mcg tablets - that's 1,000 IU per tablet and my vit D got to upper 50s in about 3 or 4 months. Still low but rather healthier than the 21 it was to start!

      Yup - lots more water needed when it is warm. I take it you mean four 500ml bottles? That's about the minimum and it also depends a bit what you are eating. Salty or sugary food needs more water, lots of veggies, soup and so on you don't need quite as much. If your urine is really dark in the morning that's fine and normal - but during the day it should get much paler if you are drinking enough.

    • Posted

      I wrote an article about my experience with low Vit D. I cannot give you the direct link here, but if you visit PMR & GCAuk North East Support, then click on Newsletters and then read

      Newsletter No 6  Nov 2010 page 2  my experience.

       Autumn/Winter 2011 Newsletter Page 6. Article  on Vit D was reproduced with the kind permission of Patient.co.uk  

    • Posted

      Hi i am taking 2 H&B 600mg cal with D3125 i.u twicw and day, and VitD 400i.u twice day plus magnesium, she did give me VitD2000u  to take two once a week for 8 weeks.Thats when she said it was better and to take the above now untill she says stop.

      Yes fog brain i did mean  4 bottles a fay of 500ml water., 

    • Posted

      What was your vit D level after 8 weeks of 4,000 IU? I can't see it would have made a lot of difference!

      Don't you get your calcium and vit D supplement on prescription? Most of us do! Natecal or Cacichew or something.

    • Posted

      No i dont i will make a note of it for when i see the doctor next. i cant remeber what my vitd was, i will see if i can find it. my did i put 2,000u, it should have been 20,000u twice a week.
    • Posted

      That's more like it - but I still hope she checked the level AFTER as well as knowing what it was before.
    • Posted

      sorry; ALSO IT SAYS 250h VitD>=50 nmol/L suggest VitD sufficiency
    • Posted

      Yes - that's OK! Next step is to check it in 6 months - sometimes it falls again which isn't really surprising. If you were severely deficient to start with then you presumably weren't making any from sunlight on your skin for whatever reason and diet alone can never keep it up where it should be.
    • Posted

      I have vitiligo and the suncream is 60 factor on prescription and keeps the sun off so that could have a bearing on not getting it absorbed through my skin.

      I did read somewhere that that can happen.

    • Posted

      Using Factor 8 suncream reduces the amount of vit D made in the skin by over 90% - factor 60 will stop it altogether! You should have been on a much higher dose of vit D supplement the entire time you've been using Factor 60 as you weren't going to be making any - you can't in the winter in the UK anyway and you effectively don't spend enough time in the sun in the summer either. And it is VERY likely that the vit D deficiency has contributed to your PMR symptoms as low vit D can cause very similar problems. So now you need to be on a dose that will keep you where you are and not allow it to fall again - hence the need for your vit D to be checked every few months until you find the right dose.
    • Posted

      Thank you i will mention this to my doctor, we do a lot of walking in the summer but i have to be covered up so my skin does not burn, but no doctor ever suggested to me that i should have taken VitD supplements, not even the hospital or i would have done

      My doctor has not said i will have another VitD test but i will also mention this as any thing to help me make PMR better i will do.biggrin

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