question

[Purplecar11]

Hello I am new here no testing or diagnosis yet. I think that my husband might have this. For about six months he has had most of these symptoms. I would like to know if anybody out there knows what the time period of having this sickness is before it turns to something dangerous?

[DorsetLady PMRGCAuk volunteer]

Difficult to say - one lady on here had PMR for 5 years before diagnosis/treatment.

I had GCA for 18 months before diagnosis, but it meant I lost sight in one eye.

But any length of time with untreated inflammation in the body can lead to problems.

Why hasn’t your husband been tested? Has he seen a GP?

[Purplecar11 in reply to DorsetLady]

We have been trying to figure out what has been going on for the last six months he just woke up one day with his pelvic bone in the back half way down his butt cheek he has always had seizers and now it has gone into his shoulders he has every symptom on there except the loss of taste

[Hidden]

Similar to DorsetLady in condition and outcome, except I am male and experienced symptoms which I ignored as either old age, or stoicism. An acute episode was the result. Unlike DorsetLady, my sight looks likely to be intact BUT not out of the woods by a long way yet.

If your husband is anything like me, he will not want to make a fuss. I hope that he does not have this disease, but if he does as a chronic phase, he would not welcome an acute episode with ramifications which would be catastrophic.

A simple examination and blood test I think is all that is required and if he needs any encouragement, my penance will be to repeat for the remainder of my life “why didn’t I listen to my wife..........”

[Purplecar11 in reply to Hidden]

thank you

[PMRpro Ambassador]

I'm the person DL refers to - I had the symptoms for well over 5 years before getting to take my first 15mg of pred. That resulted in a magical relief of pain in under 6 hours! But over 11 years on I am still on pred. Was it due to the long time before treatment? Who knows.

[Janstr]

I had undiagnosed symptoms of PMR for 10 months before it was diagnosed when it became serious & I got GCA. I urge your husband to see a doctor as soon as he can

[Rokerman]

Onset for me was pretty rapid (2-3 weeks at most), going from reasonably fit to contemplating being disabled - it was as terrifying as it was mystifying..! Getting nowhere with my GP, I DID listen to my wife, got a private rheumy consultation and diagnosis in about half an hour and it proved to be the best investment I’d made!

Theoldch is right - your husband should do as you tell him - there is no point in putting up with PMR symptoms!

[piglette]

I think I went some time before diagnosis. In the end I could hardly move and the pain was excruciating. I could not even scratch my nose without pain.

[Telian]

Untreated PMR can lead to GCA and sight loss. It happened to my neighbour. He was ill for 5 months with chronic PMR symptoms then suddenly lost his sight. Now too late.

I have GCA and PMR followed but wasn’t diagnosed for 9 months ( headaches like no other they thought were migraines) until I lost sight in one eye. I was fast tracked to Rheumatology and got the diagnosis - the Prednisolone saved my sight. I was very lucky.

I would urge your hubby getting tested ASAP.