I think my mum might have PMR how can we get it diagnosed?

[Nmbchelsea]

Hi, my mum started getting pain in her upper arm which then went upto her shoulder, she could barely raise her arm and it was extremely painful, she now has this in both upper arms and shoulders and has done since early/mid October. She has completely lost her appetite, has lost over a stone and is terribly miserable as she can literally do nothing for herself, she isn’t getting any sleep as the pain is worse at night and if she takes any painkillers she often vomits them up as she has an empty stomach.

She has been to the doctors several times, initially the doctors thought she had arthritis but after X-rays no longer believe this is the case as nothing showed up. They they sent her to a physio who told her she has rotator cuff in both shoulders and have given her exercises to do and is on a waiting list for a steroid injection.

Since then she has got worse, she has zero appetite and cannot sleep and is still in a lot of pain and unable to lift her arms. We have called the doctors several times who are useless and just say to take the pain meds. We have booked a private drs appt tomorrow.

From what I have described do you think it could be PMR? the only thing she doesn’t have is the hip pain. If so how do you go about get a diagnoses - I explained to the dr on the phone today that I think it could be this and she was just dismissive and said I shouldn’t be looking online!!

[piglette]

I only had shoulder pain for about three months before the hip pain came along. I also lost weight. I was told I had a virus!! Your mother’s symptoms sound very similar to mine. I could not lift my arms and at night I had to lie totally still as any movement was agony. I went to a private rheumatologist in the end who diagnosed PMR in thirty seconds. I hope your private doctor does a blood test and ideally gives your mother some steroids as a test run for a week or so. When I took the steroids they worked like magic in less than twenty four hours.

[PMRpro Ambassador]

Hi and welcome!

It is certainly a diagnosis that must be considered and it is time to give someone a strict talking to about the lack of interest in the weight loss if nothing else! But even the inability to lift her arms above her shoulders is a typical symptom of PMR. Have they done any blood tests and provided you with the results?

Where are you? You could demand a referral letter to a private rheumatologist but some will see patients without if their GPs are being uncooperative. Whatever it is - it has rheumatological symptoms and that is the logical place to start.

[DorsetLady PMRGCAuk volunteer]

Sounds very PMR ish - and that should be considered, not dismissed out of hand. Hopefully you will get a better response tomorrow.

[Nmbchelsea]

Thank you for all the replies. I will update tomorrow after she has been to the private Gp, he isn’t a specific rheumatologist but hopefully he will listen better and take bloods etc.

How is it diagnosed, is it done through bloods?

Does a steroid injection alleviate the symptoms or only the pills?

Thanks

[PMRpro Ambassador in reply to Nmbchelsea]

Bloods MAY show there is inflammation present but up to 20% of patients are said not to have ESR and CRP that is out of the normal range - though that doesn't mean they aren't raised for them. I was like that. A steroid injection MIGHT alleviate the symptoms but only for a short time at most and PMR is a chronic illness with no defined duration. Often PMR is diagnosed because a patient is given a steroid injection for something else and they realise other aches and pains have disappeared temporarily.

[DogAgilityObsessed in reply to PMRpro]

Good point. I will edit my response to say possibly.

[DogAgilityObsessed]

There is no specific test but as others have said your mother’s symptoms do suggest PMR should be considered.

Blood tests will possibly indicate inflammation and I think your GP should do those.

My PMR diagnosis also took months and included physio appointments (on the phone which I thought pretty useless) so I did everything I was told and when I was no better got a F2F doctors appointment and broke down in the surgery.

Once all else discounted the steroids can be the final confirmation that it’s PMR.

Good luck and let us know how it goes.

[Siena62]

It does sound like PMR. My knees were worst affected but as time went on I found lifting my arms and doing anything simple such as pushing a toilet flush or reaching for my glasses sore / painful. Even lying down was painful. I lost my appetite and lost weight. I broke down at my second physiotherapist appointment and the physiotherapist called in a GP who made an immediate referral to a rheumatologist. Unfortunately, I didn't start treatment for another three months by which time I was in a terrible state and practically suicidal.

[Loyd]

Very similar to my own experience. I finally got a diagnoses by taking 15mg of Prednisolone. Instant miraculous cure! Doctor agreed it had to be PMR. Ask if you can have a 10 day trial. Best of luck.

[Cosmos22Marigold]

I had similar experiences. I couldnt get out of bed. Couldnt put any pressure on arms or hips so made it impossible to move. Blood test first said polymyalgia then after 48 hours the Drs decided it was Pmr for which they gave me 20 mgs steroids. Within 2 days the relief was wonderful. It is a nasty illness and I had to change my Dr after 1 year as i was getting nowhere. It was good after that and with the help of everyone on this forum and Dorset lady's slow taper i have now been off steroids since last May after 2 and half years. I wish your mum all the best and hope things improve for her with the proper diagnosis. X

[Nmbchelsea]

UPDATE my mum had her appointment yesterday with the private doctor, he thinks the pain is a frozen shoulder and has given her a cortisone injection in the shoulder that hurts the most. The dr said he didn’t think it was PMR however has suggested she gets a full blood test and has written to her NHS dr to request this. She did feel a bit better last night albeit still very painful and also slept better but said she is still in just as much pain this morning, she says it’s the bicep muscle in both arms that are hurting the most. Might have to wait a few days to see if the cortisone injection helps or not!

[PMRpro Ambassador in reply to Nmbchelsea]

Wouldn't be the first doctor to confuse frozen shoulder with PMR but it tends to be unilateral - and being bilateral increases the suspicion of PMR. And frankly - the rest of the clinical picture really doesn't fit with frozen shoulder. SO sorry your CHristmas looks like being difficult,

I asked where you are - I wondered if your name suggested a London area. In which case, if you get no further joy, Prof Rod Hughes in Chertsey is far and away your best bet for a sensible reception and enquiring mind. He does private work.

[Nmbchelsea in reply to PMRpro]

Hi, thanks for the reply. We are in Berkshire (near Newbury) do you know anyone local?

[PMRpro Ambassador in reply to Nmbchelsea]

In my book Rod Hughes at Chertsey is local! But his name is mentioned for the very good reason he is an outstanding PMR expert and we know he can be trusted to think outside the box, Ask anyone on the forum who has chosen to get an opinion from him. You have already had a private GP who showed all the signs of lack of interest and knoweldge about PMR.

topdoctors.co.uk/doctor/rod...

I wouldn't rely on their website to make an appointment - it has failed before.

I think these are the current contact details for his secretary Jody Evans

drrodhughes@gmail,com

Tel [phone]

If the phone no isn't correct - I'm sure someone can correct it.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Too many zeroes I think -

020-7031-3403

Nmbchelsea

[PMRpro Ambassador in reply to DorsetLady]

Took it off the phone, I noted it last time it came up but I suspect Italian number correction stuck its nose in ...

[Nmbchelsea]

Hi all, I thought I would provide an update just for anyone else that might be in a similar situation.

My mum finally got her bloods done, through the NHS at the request of the private doctor that she saw. She had her (nhs) drs appt today for the results and the doctor has said she thinks it is PMR, there were enzymes that have shown up in the bloods - not sure what that means or if it’s related but either way she has been prescribed the steroids for PMR which will hopefully put to bed all her issues 🤞 she does have to have further bloods as she now has a swollen leg/ankle which may or may not be related, they are in a couple of weeks. I guess the medication will prove if it is PMR as I understand the symptoms go away with the medication? How long does that normally take?

[DorsetLady PMRGCAuk volunteer in reply to Nmbchelsea]

Good to hear your mum has a diagnosis - although maybe not so good it's PMR - but there are a lot worse things to have.

Some people get immediate relief from symptoms for others it takes longer, but hopefully she should see a significant improvement within a couple of weeks.

You might like to have a look at this - so you as well as she understands what lies ahead.. and remember any queries always someone around -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Nmbchelsea]

"A" swollen leg/ankle? Or both?

[Nmbchelsea in reply to PMRpro]

One leg is swollen from her knee to her ankle, the dr has sent her for extra tests to rule out a blood clot but it isn’t hot or painful so hopefully it isn’t and it may just be her blood pressure medication. Might it be something to do with PMR?

[PMRpro Ambassador in reply to Nmbchelsea]

Seems strange it is just one side but there is something called RS3PE syndrome which is quite common alongside PMR - though whether doctors would think that is another matter. It responds to moderate dose pred and once sorted doesn't often come back.