Anyone know anything about polymyalgia rheumatic?

[mrsreynolds]

Family member just dx with this and poss type 2 diabetes

I've never heard of it and wondered if anyone on mn had advice or experience?

Thanks!

[CotswoldStrife]

My mum had this - it can be inherited, but doesn't usually develop until after the age of 60. Painful, esp first thing in the morning for her. The tablets she took to counteract it lowered her immune system so had to stay away if we were ill.

[mrsreynolds]

Thank you

[Floralnomad]

My sister has polymyalgia , she’s actually had it twice probably because she came off the steroids too quickly the first time , this time she’s weaning them down at a much slower rate . She finds once she is on the correct steroid dose she is perfectly fine and able to carry on with all her usual activities , on the wrong dose she gets pain and stiffness and is pretty much unable to do much physically .

[AnnaMagnani]

My mum has it, plus giant cell arteritis which often goes together.

Treatment is steroids which are weaned down very slowly. It's extremely painful. The steroids can cause Type 2 diabetes and thin your bones so she will need bone protection medication as well - my DM ended up with a broken arm.

My DM is more complicated as the giant cell arteritis is a more serious condition (plus she's had almost every complication possible) but the good new is that PMR resolves over a few years by itself. You just have to stick it out with the steroids until it does.

It's a horrible condition which makes you feel really unwell. I got my DM the survival guide book from the PMR society and she said it was really helpful.

www.pmrgca.co.uk/content/home-page

[CotswoldStrife]

My mum didn't develop the arteritis (which is serious, sorry to hear that your mum did Anna ) but she was on a large dose of steroids and did develop diabetes and osteoporosis, as well as suffering from thinning skin/brusing because of the high dose.

She was eventually diagnosed with Lupus, but this was quite a long time after the PMR (over 10 years?) and although she managed to reduce the steriods by taking a high dose one day and a smaller one the next, she never came off them completely.

[AnnaMagnani]

Thanks Cotswold - it has been a complete nightmare. I don't think either condition is taken seriously enough.

I went to see my DM at Christmas a year ago, I hadn't seen her for a few months and just thought something is really really wrong here, you can barely move. And then the whole story can out, she was in agony, she could hardly brush her hair. She'd seen the doctor - told fibromyalgia

I am a doctor, I thought she had PMR, she then told me she had visual symptoms and I really panicked. She got a blood test out of her GP who still told her diagnosis was unlikely and well, next day she was on high dose steroids. We now know she had all the classic features of both PMR and GCA and had all the risk factors.

She's lost most of the use of her arm since the break, developed diabetes, been in hospital twice with sepsis as she is immuno-supressed, hasn't responded to steroids and needed to go on to methotrexate and the latest is that she has toxicity to methotrexate... We just feel lucky she didn't go blind.

I think as it is largely a disease of old ladies it doesn't attract the interest of other illnesses and isn't taken that seriously.