CHAPEL ALLERTON

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.

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🌸

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.

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.