Any advice for recently diagnosed with PMR?

Recently diagnosed with PMR by my GP. Have continuous shoulder/neck aches, occasional leg aches and suffer from severe night sweats. GP suggests taking paracetamol tablets "when symptoms are bad" and prescribed paracetamol cream for my neck. Discussed steroids but GP says that the possible side effects outweigh any benefit they might bring unless my symptoms get worse. Is this the normal medical response?

17 Replies

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  • Hi there, welcome to the forum! Have a look around, you'll find loads of information. To be honest, your doctor hasn't given the normal medical advice, which is to take the steroids, starting at about 15mg a day. Maybe you have some other conditions which the doc thinks are a contraindication for steroids? Also maybe you are relatively young and the doctor is thinking about the long-term effects on your health. You can always try the paracetemol and see how you get on. But you also have the right to request a second opinion and ask to be referred to a rheumatologist if you are not happy with your treatment.

    Please send us an email to info@pmrgcauk.com with your postal address and we will send you an information pack. Alternatively, you could call 0300 999 5090 and leave a message with your postal address asking for the PMR info pack.

    You also need to familiarise yourself with the symptoms of Giant Cell Arteritis, because there is always a risk of you developing this if you are not protected by the steroids.

    Good luck!

    Kate

  • Thanks Kate

    No contraindication for steroids. Age 59, not sure if this is relatively young for PMR? Had blood tests and was told these were "normal". I believe GP was suggesting I had a mild case; my aches are only a real problem turning over in bed at night and getting up in the morning, they quickly ease without disappearing during the day. GP has not made any suggestion of re-visiting him or anything just said that with time and without any treatment symptoms will pass. Night sweats are the most annoying symptom as most nights I have to get up as least once, sometimes twice, to change my soaking wet sheets. Maybe I will look into getting referred to a rheumatologist but I guess like a lot of people I don't really like challanging my GP.

  • I am 59 too - diagnosed at Xmas after about 6mths of pain in arms and shoulders - really bad in bed at night but easing most days after a few hours. Initially one Dr said he thought it was Arthritis and gave me Naproxen to take every 4hrs - said to come back n a month if no better. These made no difference - after 2 weeks went back to another Dr in the practice who said she was pretty sure it was PMR - blood tests confirmed; within 3-4 hrs of taking the first dose of steroids I had no pain and felt great. Have been starting to reduce my dose now.... do feel yuk some days - mainly tired so have to take it easy...no terrible pains though as before. Hope this helps. This support network is really good for help and advice. Keep asking q's!

  • Hi Badskittler,

    So your GP just thinks you can live with this does he? I wonder how he would feel if he had sopping wet sheets every night and couldn't turn over without pain. As your bloods showed no inflammation (mine never have in over 2 years of having PMR), your PMR is atypical. Therefore, you should be refered to a specialist for a proper evaluation and appropriate treatment.

    You are well within the age range for PMR.

    Kate is right - GCA is something you may develope if you are not protected by steroids. If you get nowhere with your GP then my advice is to see another doctor. Don't put up with being fobbed off by a doctor who seems not to care about you at all.

    Paracetamol eh! Tell him prednisolone's as cheap as chips as well, but it is the drug that is normally given for this illness.

    Pats.

  • Hello Badskittler

    I would urge you to get a second opinion following my experience of living with undiagnosed and therefore untreated PMR for many months.

    My symptoms became so severe that I spent several months in bed, attending rheumatology appointments by ambulance and wheelchair. Paracetamol and Ibuprofen didn't touch the pain. My symptoms slowly disappeared within just under a year only to be quickly followed by a whole bunch of different symptoms together with a return of the original ones and eventually PMR and GCA (Giant Cell Arteritis) were diagnosed.

    As Kate has said of GCA, "there is always a risk of you developing this if you are not protected by the steroids", and this was certainly borne out by my experience. You are at much higher risk of developing GCA, which can put your eyesight at risk, if you suffer from untreated PMR. You can also be at risk of developing many other 'nasties' with uncontrolled inflammation coursing through your body.

    Do read the British Society of Rheumatologists Guidelines for the Management of PMR on the PMRGCAuk website, and perhaps download a copy and take to your GP. I do wish you well.

  • Hello Badskittler,

    Please get referred to a Rheumatologist,

    Change your GP if you have to!!!

    I was only 49 when I was diagnosed so you are certainly young enough!

    Take care,

    Karen

  • PS:

    you don't need to challenge your GP, just go to any practice that are taking new patients, and ask to join, they will do everything for you. Ask around for good recommendations.

    I did it 18 months ago when I had a gruff, miserable GP with a scruffy practice waiting room, who didn't want to do anything much for you.

    My new doctors are brilliant, modern, young, and up for the challenge - so don't be scared.

    Take care,

    Karen

  • Hi Badskittler

    OMG, I have heard the lot now ! ! I thought it was bad when told by my GP that he had only seen 2 cases of PMR in twenty years so started me on 40mg instead of 15mg. What planet is your GP on ? If you have PMR things will only get worse, if you are being left untreated. Before diagnosis like many others I was like a 100 year old stone statue, who couldn't move, turn over in bed, lift my arm to brush my teeth, step into the shower etc etc Google Professor Bhaskar Dasgupta - Management of PMR Definitely return to your GP surgery and see another Doctor Please take care, we know how you are feeling x

  • Alternatively, is there another GP in the practice? Your GP is living in the 19th Century. You don't say how the diagnosis was made. Did you have the blood tests to detect the levels of inflammatory markers? If not, how would he know it was PMR without the other diagnostic tool of giving you prednisolone to see how your body reacted?

  • I agree that maybe a second opinion is the way to go...either via another GP at your practice or another practice altogether.

    If your bloods are normal and your symptoms described as 'mild' how was the diagnosis of PMR made? Have they conducted tests to rule out other issues and diagnosed PMR by default? It sounds a bit odd to be honest

    I hope you can get some answers, a decent treatment plan and some relief asap

  • Hi, has a definite diagnosis of PMR been made? I would want to speak to the doctor again. If untreated PMR, there is a significant risk (I think 70%, of developing GCA).

    Having said that, I have not taken steroids, other than for a week to confirm the diagnosis, and went down the natural diet/supplements route. This has worked for me, and after 15 months now only have small aches. However, my GP issued many warnings about what to look out for, as I wasn't taking steroids, and I still have monthly blood tests. These can also be misleading ~ what is normal for you? I was told at the start that an ESR of 38 (after the week on steroids) was not worrying; I think 40 is the trigger for diagnosing PMR. After 15 months of natural diet etc, it's down to 4.

  • Hello,

    You comment on your diet and supplements keeping your PMR treated, I am quite curious as I have been dealing with PMR for approx 18 months and I am 52 years old. My husband and I have been concentrating on diet, we have both taken off approx 30#. We purchased a Norwalk juicer last November (but have been juicing for altogether for a year) and juice every morning ( consisting of kale, broccoli or cabbage, celery, cucumber, carrots, granny smith apple,ginger) a 16 oz glass with an additional 14 oz. for later around lunch time. I have cut way back on breads and very little dairy. I will have a sample bread or cookie at the grocery and perhaps some cheese in some soup on occasion. Early on in my treatment I was at 30mg pred, I am now at 10 mg pred and now for just 2 months am also taking 200mg plaquenill twice a day. I am really stiff usually till about 1 PM and then it starts to come back about 4PM and can't seem to get through the evening without a good 2 hour nap every day, I do seem to sleep okay but do a fair amount of tossing and turning. My CRP and ESR are within normal limits recently. Any input is appreciated. Thanks

  • Hello bluejaygirl...I see this post is from a year ago and hope you are still available for comment. You are the only other person I have found to have mentioned Paquenil. My rheumatologist has me taking this to hopefully help with reducing the Prednisone. Why were you taking it and did it help? Did you suffer any adverse effects from it? Hope you are doing well. Merk

  • Thanks for all your responses.

    You folk obviouly know a lot about this than I do. I went to my GP because of shoulder aches and he did physical tests for shoulder mobility, arm strength etc presumably to rule out some things. I have no idea what was actually checked for in my blood test, I was just told by the practice nurse over the phone that the results showed nothing out of the ordinary. It was when I decided to go back to find out more my GP diagnosed PMR based purely on my description of the symptoms with no treatment necessary.

    Will phone again tomorrow to see another doctor and see what happens.

    Thanks again everyone.

  • Hi,

    I was just as you describe. The night sweats and pain and cramps in arms and shoulders vanished once I was on 15mg pred.

    I am 50 and GP isn't convinced it's PMR as bloods don't show any inflammation and he's trying to get me off the steroids now..

    Started steroids 3 weeks ago and am currently on 10mg .

    If any symptoms return I will contact him and insist I stay on a comfortable level. Taking the steroids has far outweighed any negatives, little pain and no sleepless nights.

    I think stress and tiredness make this illness much worse.

    Take care and good luck.

  • Hi hope you are doing okay. I was diagnosed beginning feb. Started on 40mg pred now on 15mg. I did a lot of research and today am feeling really good and last night got back to Zumba with no ill effects today. I eat a lot of kiwi, pineapple, green veg as they reduce inflammation. Drink lots of water, fennel, camomile and green tea, have also cut out dairy, wheat and gluten. I walked a lot before going back to work after 5 weeks off. I also still have sauna, steam and jacuzzis up to 3 times a week that was the best natural pain and stiffness reliever I would say. Hot water bottles and bags of frozen peas also. Had a few massages too as well as using oils myself after a warm bath. If any of this is any helpI am glad to share as this is not a nice illness eh. Take care.Oh also I am now taking Serrapeptase check it out.

  • Hi, good to read all,this info. Yes I find nit to over do things when feeling ok. First 3 hours of the day are totally unuseable and have to wait for the pills to kick in. After that a hot shower and gentle walking (dogs) . Think my PMR is after huge stress losing two sons and moving house after 20 years. First Shingles and now this..... Hey Ho what next? All the blog helps so much and I follow anti-inflammatory diet monitored by the Arthritic Assn. - costs peanuts to belong and get so much help too. All best wishes

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