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[rosie41]

Hi my name is Barbara and I am 73. I was diagnosed with PMA 3 months ago and it came as quite a shock as it was so sudden. I am getting cystitus but not bacterial and wonder if this is something to do with it. It is driving me mad as antibiotics doesn't help as it's not an infection. Has anybody had any experience with this.

[PMRpro Ambassador]

Hello and welcome - yes, unfortunately cystitis does seem to accompany PMR. I mentioned it to a rheumatologist who looked surprised - and then started asking her patients and, lo and behold, lots of them had problems!

Are you on calcium and vit D tablets? Most of us are and that is what causes me problems - if I don't drink loads it seems to make a difference. On days when I'm travelling for example and don't drink my usual 5 or 6 cups of tea / glasses of water I have problems the next day. But I also had it before being put on pred and calcium/vit D so although some people find it started with pred it can be any of these causes - and possibly even more than on.

If you can't get it calmed down by drinking more water, there are medications which sometimes help - the cause is something called irritable bladder or detrusor instability. If you google it you will find lots of references with advice and suggestions of how to improve the symptoms.

[rosie41 in reply to PMRpro]

Thank you very much for that info x

[Annodomini]

I've had cystitis on and off for most of my adult life, sometimes bacterial and sometimes not. Your pharmacy can provide Mist Pot Cit which is cheaper than and just as successful as antacids like Cymalon. Do drink lots of water or water-based drinks like barley water to flush out any irritants. I hope you get over this very annoying and irritating affliction very soon - it's bad enough having PMR!

[markopolo]

I was diagnosed with p.m.r. two years ago and though my symtoms are just the same i have now been told i have not pot p.m.r. now ? Has this happened to them

[PMRpro Ambassador in reply to markopolo]

What do they now suggest it is and why?

It is thought that about 1 in 6 patients with an initial diagnosis of PMR are later given a revised diagnosis, often of LORA (late onset RA) which can appear almost identical in the early stages. These patients often either needed much higher doses of pred to get any result and then were unable to reduce the dose without great difficulty. Any patient who doesn't have a dramatic response to pred at the beginning should be investigated thoroughly for other options although it is possible to have PMR and something else at the same time.

PMR isn't the illness as such - it is the name given to the symptoms of some other underlying problem. In our case, as far as the PMR we discuss here is concerned, it is the result of an underlying autoimmune disorder and it just so happens that the symptoms can be fairly well managed using pred - whether the pred has any effect on the underlying autoimmune disorder isn't known but some work done a couple of years ago does show that neutrophils are present in GCA (PMR is closely related) and some other forms of vasculitis and it is known that pred works via the neutrophils (a white blood cell important in the immune response).