I was diagnosed with PMR by my GP 3 weeks ago and put on Prednisolone 30mg a day. Within 3 days I felt brilliant...all swelling had gone from my eyes, hands and lips...the swelling was accompanied by a painful dark red rash which also disappeared. I could walk with very little pain for the first time in 3 was like a miracle and I was so thankful to get a diagnosis and some effective treatment. I went into hospital 3 days later for a planned hip replacement so the steroids had to be cut down fairly drastically. The swelling returned along with pain but the hospital supplied Morphine and all went well apart from the wound not healing as quickly as it should ( a side effect of steroids).

My GP wants me off Prednisolone as soon as possible and it appears they have changed their minds about my diagnosis....nearest guess now is Rheumatoid Arthritis! I have asked to see a Rheumatologist but Heaven knows when that will happen.

As I reduce the steroids all the old problems are returning....I'm tired of all the guesswork that goes on and feel the need to remind the various GPs I see that while they decide what I have and how to treat it I am having to live with pain, itching and constant exhaustion.

35 Replies

  • susyj, Sorry to hear the doctors can not make up their minds regarding an accurate diagnosis. Are the aware how much your symptoms decreased taking the Prednisone. Have they checked lab markers for PMR such as your ESR or send rate and your CRP levels(creatinine protein)

    On what basis is the doctor now saying it is rheumatoid arthritis?

    I pray that you can see a rheumatologist soon? Keep your present symptoms in front of your doctors.

    Let us know how things go. ❤😍

  • My GP says the pain should be in my shoulders and muscular rather than my joints. All my joints are painful...knees all the time, hips a lot, wrists some of the time and elbows. He did the original bloods to try to discover what was making me itch all over....I was scratching my back and legs until they bled. It was one of the results of these blood tests and my aching eyeballs that made another GP think it was PMR.

  • I am seeing a rheumatologist next week! I suppose it's expecting too much that he will be able to finally give me a diagnosis?

    Do I tell him everything? Itchy skin, sore eyes, blue swollen hands and feet, bloated stomach? Or just concentrate on the pain and hope that he has read my GP notes?

  • Yes, everything. The chances of him having read the notes are minimal. Prepare a bullet list of symptoms, with durations if possible. Don't make it too long and have 2 copies - one for your notes and one for you to refer to and make notes on if you have the chance.

    Did you have a rash all over or was it just the itch? If there was a rash - I suppose it is too much to hope you took a photo? And obviously of the facial rash you mentioned. Or of the blue swollen hands?

    There are a lot of causes of polymyalgic pain and the itchy skin, aching eyes and bloated stomach really aren't typical of PMR - why did your GP think they were? Whatever springs to mind from your initial post - it isn't PMR.

  • I own GP just went by blood tests. He only works 2 days a week now so I have to see another doctor occasionally. I asked him for a copy of results but he said I didn't need them as I wouldn't understand what the results meant! My own GP agreed that I needed to see a rheumatologist. I have a picture of my rash but sadly didn't take any of the blue swollen hands. It was when I showed them to the new doctor that he put me on 30mg of Prednisilone and after 3 days I was back to myself with no symptoms at all! he then reduced to 15mg..two weeks later I saw my own GP and he cut them to 10mg which I am still taking. Both doctors give conflicting said it was Lupus the other didn't think it was. But both agree my body is full of inflammation and the new doctor suggested Vasculitis.

    All of my symptoms are back but nowhere near as bad as they were.

  • How patronising! A doctor who suggested that to me would get a flea in his ear as my mother would have said! We are encouraged to collect our lab results and keep our own collection.

  • You sound very experienced in these things and I wish you could come and sort my GP out LOL Did anything spring to mind when you read my symptoms? I'd be very interested to know please :)

  • I went to uni and shared a flat with medics - and worked in the NHS for a long time, so did my husband. I'm not over-awed! It's like the Queen, the same as the rest of us, they all go to the loo!

    No, sorry, not really. Except vasculitis of some sort seems a reasonable bet - and if not it is something autoimmune so there are a load of tests they should be doing. You should be a bit lighter of blood samples ;-)

    When you said your hands were blue - were they cold and numb?

  • No they weren' feet and halfway up my legs were blue too. Before they went blue there was a sort of pattern of dark red splodges! Of had to be on a Friday access to medical help unless I drove 30 mile round trip to A&E :(

    GP said they'd done every blood test known to man! But when I asked if they could tell me if I'd ever had chickenpox it was one they hadn't done! I'm frightened of getting shingles because my aunt suffered so badly with it.

  • They did did they? Bet there is a selection of (for example) lupus testing they didn't do, or other really complex rheumatology tests... Why do I think that? Because in a lot of places a GP wouldn't be ALLOWED to order them because of the cost.

    This is going to drive me up the wall now - because there is something at the back of my mind and I can't remember the term!

    But honestly - I really do suggest you post on the VasculitisUK forum on here and also on the LupusUK one. There is someone on the Lupus one who might recognise something of that.

  • And lightbulb moment: was it typical of livedo reticularis?

  • Autoimmune / vasculitis / connective tissue disease

    Small, medium and large vessel vasculitis are associated with livedo racemosa.

    By George I think she's got it!!

    Now tell me if my death is imminent!

    Just found this too!

    What is urticaria vasculitis?

    Urticarial vasculitis is a variant of cutaneous small vessel vasculitis. It is characterised by inflamed and reddened patches or weals on the skin that appear to resemble urticaria, but when the skin is examined closely under a microscope, a vasculitis is found (inflamed blood vessels).

    By the way I asked for a test for GP said not necessary the other said it had been included with the other I'd had and was negative!

  • So it DID look like that?

    Nah - think you'll be around for some time yet!

    Ah yes - but WHAT test for lupus...

    And personally - I believe NO-ONE unless I see the report with my own eyes. But I am renowned for being a sceptic...

    Have you been to visit Paul and his friends over at LupusUK? They really are a lovely helpful lot and we have wonderful discussions over there, no holds barred ;-)

  • No..but I will ...thanks :)

  • Hi Susyj, some doctors do talk rot, if they had done every blood test known to man, you would probably still be there having needles stuck in you. There must be over one hundred and fifty blood tests just for things beginning with A. New ones are coming up all the time too.

  • Couldn't agree more! I can remember taking over 50ml from an elderly gentleman about 40 years ago - and even then it was a minimal number of test compared to what we had on offer! Every test known to man would leave you anaemic!

    On the other hand - maybe we women know about more...

  • I think it may have been his idea of a joke! I forgive him ....he's young! hahaha

  • The eye, hand and lip swelling and dark red rash don't sound like typical PMR symptoms, unless I have just not read about it...and I've read A LOT about PMR. There are a host of rheumatic and autoimmune conditions that have pain involved, and there are probably likely conditions with the symptoms you described pre-prednisone. If you can go to a rheumatologist, that would probably be wise. Sounds like differential diagnosis to rule out several other conditions should be done before jumping to another conclusion of rheumatoid arthritis. I am NOT a doctor, so just suggesting that a specialist will probably approach this differently than GP is doing.

  • Thanks very much...I agree :) Have a good day x

  • Good call... No swelling in lips and face in my husband either. Might be something else.. Rheumatologist,, definite. A good one

  • Hi Susy, my namesake. Whereabouts in the UK are you? I have a fantastic rheumatologist in Surrey - I was wondering if you could get to see him. Big hugs xxxx

  • I live in East Yorkshire.....researched but not much helpful in my area. Thanks for the hugs....really need them :)

  • Oh poo - sorry you are so far away, Susy. Wish I could give you a hug in person! Xxxx

  • Whereabouts in EY? There is a support group based in Middlesborough and I know people go there from all sorts of places so may be someone from your neck of the woods.

    The rheumy department, in particular Prof Sarah Mackie, at Leeds is outstanding and multidisciplinary - they are doing quite a bit of research. You are entitled to be referred there if you wish.

  • Just an update for those who are unaware, Dr Sarah Mackie has moved from Chapel Allerton, Leeds to Wharfedale Hospital in Otley.

    Pity there isn't more Rheumatologists around that are as good as Dr Mackie.

  • She has been at Warfedale hospial for some time I think - it is also part of the Leeds Teaching Hospitals NHS Trust and they have rearranged where rheumatology services are provided.

    Thanks for telling us though - I shall change my label for her!

  • I'm afraid that would be a 120 mile round trip...I can't sit in a car for that long. I have found the group online though....thanks very much :)

  • No - I didn't expect you to go to the group but they may be able to put you in touch with people more local to you. There are some informal groups who meet each other for coffee somewhere - rather than an organised meeting with a speaker and so on.

    It will get better!

  • Ah yes I see :) Still researching that and keep coming up with groups for Fibromyalgia, ME, MS etc. Reading the posts here has helped a lot and I thank you all :)

  • I to was diagnosed with PMR Nov 14 and put on pred . August 15 was taken into hospital with severe head pain sent home told it was probably a migraine had an appointment given to see a neurologist , even though I persificately wanted to see a rheumatologist . Didn't do any good . He came up with multi migraine. Never had a migraines in 50 years I'm now 68 . Had this pain started in face after traffic accident when I was 22 . Been told it it was neuralgia, miofacial , trapped nerve. Even had 8good teeth out because of the pain .

    I was hospitalised again the beginning of this month . Different hospital , they thought I may have had GCA .

    I had a high crp 91 . They made me an appointment to see a rheumatologist. Hooray , I had asked at my doctors from the beginning of my diagnosis to see a rheumatologist but was told it wasn't necessary .

    Am now on a slow reduction of steroid ,dropping half a milligram a month , because if I do it any quicker I have a flare . She questions the original diagnosis of PMR but I still must come off of this tablet slowly . She is setting me up for a Dexa scan (bone density ) have had numerous blood tests , she suspects RA in neck and hands possibly shoulders.

    I feel now that somebody is listening .

    So don't be fobbed of . I believe you have a right to see a rheumatologist so keep insisting . Your not their guinee pig to test their trials and errors . That is how I feel . Good luck . Take coming of the steroids at a pace that suits you . You don't need a flare up . Insist you see a specialist , I know it can be difficult , but I wish I had . Take a partner or friend with you .

    Good luck you don't need the added stress to fight your corner 💐

  • My husband has been on a low does for over a year. He goes from 10mg to 5 mg. Can't seem to get off them. He still has an extreme amount of pain when he walks even on the steroids but won't go up due to side effects. His skin is tearing when he lightly bumps into things and he has diarrhea as soon as he finished eating.. glucose is up and down, headaches so the drug is good, but Oh so bad.

  • How fast is your husband reducing from 10mg to 5mg, is he going too fast? If he has pain he has not got the inflammation under control and needs to increase the dose of pred until he is comfortable. The aim is not to get off the pred but to find the lowest dose that is OK for him. It seems that is above 5mg at the moment from what you say. Not increasing is mad as he is having the worst of both worlds and even on 10mg it is not a large dose. If he goes up to 10mg and finds he is OK he can reduce pretty quickly to a lower dose if he does it in a short time. Thin skin is a problem I agree. Glucose can be improved if he looks at his diet. Is he taking anything else besides pred to cause the diarrhoea?

  • thanks for your reply... personally the steroids cause so many side effects that he doesn't want to trade the feeling a little better for the other side effects. Blurred vision, increased BP, heartrate, diarrhea. You just don't know which is worse.. I can't get him to go up.

  • As PMRPro says has he had the diarrhoea checked, it does not sound like the usual pred side effect. Also relaxation, good diet, exercise etc can help heart rate and BP. Again it may not be the pred although they are side effects or it may be caused by the extra pain even.

  • Has the diarrhoea been investigated? It may not be "just" PMR/GCA.

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