Just been diagnosed with PMR

[Pin66]

Hi just been diagnosed with PMR and am really struggling to come to terms with it and the pain. I'm on 30mg a day and seems to be making very little difference to the pain - today will be my 5th day of taking the meds.

I'm 47 and my understanding is that PMR usually affects people who are 70+?

[polkadotcom]

I was diagnosed at 57 after badgering doctors for 2+ years..............it's now believed that the onset was in my early 50's. I am by no means the only one or the youngest one.

However, as you are still in pain after 5 days on 30mg, I think you should go back to your doctor. There are patients who take longer than the usual time to get relief from steroids but I think I would be asking for more tests to be done, including a thyroid check and a vitamin D test. There are other conditions which mimic PMR symptoms and I think these should be/have been checked pre-diagnosis. PMR is usually a diagnosis of exclusion.

Generally speaking, for out and out PMR we would expect up to 70% improvement in pain levels in around 72 hours. Your doctor has put you on a much higher dose than is usual and I would have hoped to get real relief at that level - the usual starting dose is 15 - 20mg of prednisolone.

[PMRpro Ambassador]

First of all NO! - the average age of onset of PMR is 73, I'll give you that. However, half of people over 80 have PMR - so it takes quite a few under 70 to bring the average down! I was 51 when it started, most of the people I know on the forums were in their 60s when it started. The guidelines have been changed to say it should be considered in patients over 50 - and in time the average age will fall as more younger patients are recognised as having PMR. However - 47 is young for PMR pure and simple.

That all said - if 30mg/day hasn't made at least a reasonable improvement I think the diagnosis may be questionable. There are several causes of such symptoms and they should be ruled out before coming to the conclusion it could be PMR - and then a close eye kept on the response to pred. A 70% improvement in stiffness and pain should be seen within a few days. In my case it was literally in hours but that isn't always the case.

If you follow this link it takes you to another post on this forum. The last link in it is for a paper by the Bristol group under John Kirwan who is active in PMR research. This paper is aimed at GPs to help them diagnose and manage patients with PMR. They use a "pred sandwich" - they give a week of vit C tablets, a week of 15mg pred and then a further week of vit C. Obviously the vit C doesn't do anything for the PMR (it acts as placebo) and they look for a 70% improvement in the PMR symptoms within that week - and for them to return in the same time span after stopping the pred. There is a graph showing the effect in PMR where the line denoting symptoms drops dramatically and goes back up just as dramatically whilst in a couple of other disorders it drops a little bit but never really changes enough to confirm the diagnosis. These patients need to see a rheumatologist and have further investigations done. I would suggest you are one of those patients.

patient.co.uk/forums/discus...

[Runrig01]

I was 46 when symptoms started, despite my GP suspecting it from the start, it took 14 months of Rheumy visits undergoing many tests to exclude other possibilities before I was finally diagnosed. I agree with the others that I would be questioning diagnosis if after 5 days you are having little relief on 30mgs. I was started on 15mgs and had relief in 4 hours, although not everyone is this quick. I would be asking for further tests. Out of interest was it a GP or a Rheumatologist who diagnosed you?, it is recommended all Atypical patients be diagnosed by a specialist, and being under 50 makes you atypical. Hope your pains settle soon xx

[Pin66]

Thank you for your replies. I'm so glad I found this forum.

Runrig I went to a GP, initially he told me it was tendonitis and gave me Naproxen and strong pain killers for 2 weeks - didn't change anything. Then went back to see him and he diagnosed me with PMR and gave me pred to take for five days. I'm due to see him tomorrow morning. I'll be asking him to refer me to a Rheumatologist, is there anything else I should be asking him.

Thank you all for your kind words and support.

PMRpro- I will bring the Paper by the Bristol a Group to my doctors attention - not sure how he will react? I've just recently moved into a new area and don't really know the doctor.

Will let you know what happens. Once again thank you for your replies. Xx

[PMRpro Ambassador in reply to Pin66]

It's aimed at GPs - and he sounds as if he needs to read it. You can't just diagnose PMR - whilst it is a typical clinical picture it's a differential diagnosis after a lot of other things being ruled out. Being young and not responding to pred makes it sound questionable.

[Celtic PMRGCAuk volunteer]

Hello Pin

As to whether there is anything else you should be asking him, it depends on what tests, if any, he has already carried out. As there is no specific blood test for PMR, it is a diagnosis of exclusion.

Firstly, GPs usually check for inflammation in the blood by doing two blood tests, ESR and CRP. These are just a guide - often patients with PMR/GCA have high markers of inflammation whilst a few can present without any increased markers at all.

Another test you should ask for is a Vitamin D blood test as any deficiency can lead to pain resembling that of PMR. This is easily treated with a short course of high dose Vitamin D3.

Also, in view of your younger age, a hormone test would be wise - we have come across a few patients in the past who have originally been thought to have PMR whereas further investigation revealed a hormone problem eventually corrected with hormone treatment.

Yet another contact in the past was diagnosed with PMR but following little response to the steroids was further investigated and eventually diagnosed with rheumatoid arthritis and prescribed different treatment with successful results.

Hope that helps when you see your GP tomorrow - good luck.

[Hidden]

Hi Pin66,

It might be worth asking for blood tests to rule out other auto immune diseases such as ANA, ANCA, CK and complement.

Good luck.

[jinasc]

You also need a copy of the Guidelines on Diagnosis and Treatment of PMR issued by the British Society of Rheumatologists.

These can be found on the BSR website, NHS website, PMR GCA uk website and this website pmr-gca-northeast.org.uk. You can download and print them off.

[wendy_bullock1947]

They usually say over 50,but the prednisolone worked quite quickly for me and the relief was wonderful, perhaps it would be best to have another consultation with your doctor,l know the pain is awful when it is at its worse but it can get a lot better, Good Luck

[duchessrenee]

Hi - I am new to this website and just discovered it (thankfully) today. I was diagnosed with PMR about 1 year 3 months ago at 53. It took over a week for me to feel anything from the Prednisone (started at 20mg) but it did happen eventually. I am currently on 5 mg gradually reducing to 4, although that is not going very well. I too, had different medical opinions about what was happening to me in the early stages of my 'illness' - a few months before, I had been extremely fit, working 2 very physical jobs, going to the gym, etc. etc. and I became virtually crippled within days. At one point I couldn't raise my arms, walk without clutching onto furniture, or even dress myself. I was in terrible pain. Anyway thank God I saw doc at my work who recognised PMR and my GP listened to the diagnosis of that doctor. I went to a Rheumatologist who poo-pooed everything and made me feel like I was faking and wasting her time, just because my sed rate remains normal.

It is a real relief to find other people with this disease and have things validated. What I found helped me in the early stages, as I too was very depressed from having to give up so much of my active life and in a lot of pain in all my large joints, was to not look at what I couldn't do and rather focus on those things, no matter how small, that I could do. I tried hot yoga (Yin yoga, all performed down on the mat) for a few months and that was awesome. I started having therapeutic massage and a chiropractor with experience in rheumatoid Arthritic patients helped immensely.

Anyway, try to discover new things you can do within your range of ability, and hang in there! I am doing much better this year, and am slowly able to bring back some of the activities I used to enjoy although I still have to be careful not to overdo it. Once in a while,my PMR returns to bite me on the ......

[polkadotcom]

Hello Duchessrenee and welcome from me. You are quite right when you say that the positives should be the focus, the negatives are not welcome!

I'm glad you found Yoga (hot or not) helpful, but I couldn't do it, well, I could get down on the floor as that's easy enough (I just fall down) but as for getting into any kind of positions once down, I'm not even going there!

Gentle massage and the right kind of exercise is essential. I can at least walk for a short distance and potter round the garden and I have just tried Bowen Therapy which I found worked excellently.

[Pin66]

Hi, thank you all for your support and advice. Just wanted to update you all. Went to see the doctor last Monday for follow up appt. explained to him the pred did not help with pain/stiffness etc and asked him my ESR result. He explained that ESR was 11 and therefore he wasn't sure what I had.

I appreciate, as some of you have already mentioned you can have a low ESR and still have PMR. I have been referred to a Rhemutologist and have an appt on Wednesday morning.

I will, as suggested by Celtic ask for the Vit D and hormone tests. In the meantime just trying to manage the pain with over the counter pain killers and nytol at night so that I can get some sleep . Will keep you guys updated and once again sincere thanks to everyone who responded.