Referral to a rhuematologist

Posted , 14 users are following.

i have never been referred to see a rhuematologisti in the four years that I have suffered with PMR I am just under my doctor.  Is anyone else in same position?

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  • Posted

    Hi susan. yes I am the same. My doctor has never even considered a referral to a rhuematologist, he simply lets me control my own treatment as I assume he knows very little about PMR. Reading some of the discussions on this forum does not tend to inspire a sufferer to consider going to a rhuemy althought some do suggest that there are good ones around, they seem to want you off medication asap even though you are still suffering.
  • Posted

    When I first went to GP with pains I was given NSAID's.Five years later when on max dose age 45 decided to refer me to rheumatologist who diagnosed PMR after response to large steroid injection.Once treatment sorted back to GP care with referral back when necessaryAt present am back under hospital as had to come off steroids.Started methotrexate tablets but due to bad side effects have just been started on injectionsRheumatologist wants to see me in six months then yearly.Whether at some point back under GP who can say but I know a few who have never been to rheumatologistGood luck on your journey
  • Posted

    Hi Susan, PMR can often be managed at primary level. Some people see a rheumatologist earlier on, but as time goes by unless there is a good reason to see them you are fine as you are. I did see a rheumy as I kept being told I had a virus, so I saw one privately who diagnosed PMR.  If you have a doctor who knows what they are doing that is fine,
  • Posted

    The first doctor I saw in the practice diagnosed arthritis and actualy told me when I queried him "I KNOW WHAT I'M TALKING ABOUT".

    A couple of months later I went back and this time I saw another doctor who listened to my symptoms and said PMR, and he was spot on, Correct diagnosis in about a minute.

    I thought..."he knows what's what so I'll stick with this one.

    Rhuematologist has never been mentioned but I have complete faith the doctor and am managing my PMR to his instructions.

    The one time I thought I knew better (when I tried reducing below 5mg pred) I was proved horribly wrong and him right.

    • Posted

      Why is it so many of us have difficulties trying to get below 5 mgs?  I have tried 3 or 4 times this year.  Now back to 7 mgs.😡
    • Posted

      Hi Constance

      i can't get below 5mg either. I'm on 6mg at mom and at the moment I am having a bit of a flare up again. 

  • Posted

    susan i have never seen a rhumy  either  ,i recon if the gp insnt sure what the  pain is he then passes it on to a rhumy.  where as my gp once he was convinced it was pmr  he got me  sorted with pred.  and helped me to drop the dose safely,   where as now   i am controling my own drops    and he is happy with that,   so hopefull i am on the right  road...  i have said that before   lol
  • Posted

    Susan,

    Early on I was referred to a rhematologist who listened to my symptoms and ran a few blood tests and told me he saw nothing out of the ordinary.  I was referred to another specialist who prescibred a weeks course of prednisone which TOTALLY remedied my pain!  Eureka I said!!  But he would give me another presciption for prednisone.  Go figure.

    So I did my own research which took me to this forum, and when back to my GP armed with all this information and now my GP is allowing me to do what I want to do with the prednisone.  I'm at 8 mg after a year and a half and will start going down again in a few weeks.

    My experience is that "we're on our own."

  • Posted

    In Aus. PMR diagnosis made by GP in less than 10 minutes. Once the diagnosis is made the treatment is obvious so no need for other opinion or referrals. Irregular return visits to GP(s, they go on holiday) for all sorts of little things, like mild shingles and headaches and .....
  • Posted

    If it is a straighforward case - i.e. it ticks all the boxes for signs and symptoms and responds to 15mg pred then there is no real reason to be referred unless problems crop up later.with reducing. My blood tests were never up so my then GP couldn't get his head around the idea it was anything, never mind PMR! The rheumies I saw didn't think it was PMR either - even though I responded magically to 15mg pred in 6 hours. A different GP was perfectly happy.

    So really it depends on the GP - if they recognie the possibility it is easy enough to manage if they are sensible. If you stick with a GP you are very unlikely to ever be faced with the thought of trying methotrexate or another so-called steroid-sparing drug - they can only be prescribed by a specialist. 

    If you have a good rheumy then it can be brilliant - but if you get one with fixed ideas about PMR and how it works you can end up with problems. Ppossible GCA really should always be referred to a rheumy - GPs see it very rarely - but they aren't always perfect with that either. It's a bit luck of the draw unfortunately.

  • Posted

    When my GP diagnosed me with PMR about 2 and a half years ago

    he wanted me to go to a Rheumy for a second opinion.  I did and

    he was very young.....agreed that with a 92 sed rate it was PMR and

    gave me a prescription for l0mg pred with directions to take one a

    day.  Now don't we all know now that l0mg is not enough to start.

    .  I went back to GP and he promptly gave me a new script for

    20mg which is more in line with a starting point....Now....which one

    would you want?  Just cause they are supposed to be a specialist

    doesn't mean they actually are one.  I've been a patient with my

    GP for almost l7 years and while he's not perfect I'd prefer him

    anyday.

  • Posted

    I was on 5mg for about 6 months and was convinced I was over PMR, I had no aches or pains that couldn't be put down to arthritis/age/lifestyle. My GP wasn't as sure as me but allowed me to reduce.

    At 4mg I ached and at 3 mg I was in agony, I couldn't get out of bed without falling out and climbing the door. I admitted defeat and my GP put me straight up to 10mg ready to start a reduction to 5 some time in the future.

    Bless him  he didn't say "I told you so"

    I think 5mg is probably the least most of us who are still suffering can get down to.

  • Posted

    If you are happy with your teatment, stick with it...Rheumy`s aren`t all they are cracked up to be!.....

    This forum has been the most useful of all to me, especially Eileen...and to many others....Good Luck

    • Posted

      Well I guess I must be in the minority.Both my GP and West Suffolk Hospital rheumatologist and rheumatology nurses have been helpful and pleasant.My GP sees me most of the time but when there are problems (as now)I get sent back to the hospital and have never waited more than 4weeks for referral appointment to come through.So sad that so many have negative experience
    • Posted

      Yes, it is sad....my Rheumy, I call her the smiling assassin...she is pleasent with the hello....then no working with me...1mg drop every month, which in the beginning (4 years ago) gave me flare ups....and then told me,.....we must get you off steroids.!....so now I see my doctor and talk it over with her....I am still struggling, with a flare up now....but just hope to get there in the end....I`m very on edge when going to the hospital, and I know it`s not me....my sister has RA...in great pain, and when my sister was telling her how she felt, she said, be quiet and listen to me!.....

      Having said that, we can ring up and see her very quickly.....but we don`t want to!!sad Good luck...

    • Posted

      It is fairly sure that if you can see a doctor quickly they either have no idea what they are doing or no people skills. If you are really unlucky, both!

      We had a brilliant man who was a partner in our GP practice - spoke umpteen languages etc etc. Probably knew his medicine perfectly - just couldn't apply it to people. He should have been a pathologist. But he had his uses - once he knew we both worked in the hospital he thawed a bit, even more when he found we had a flat down the valley from where he spent his summer holidays climbing mountains - and provided the prescriptions we needed so you didn't have to wait for a repeat prescription to be done as there was ALWAYS an appointment same day.

    • Posted

      The smiling assassin has both....no people skills, no idea, you`ve hit the nail on the head. I am often told, change to another Rheumy in the hospital, but I always think that they tend to stick together...I may be wrong, what do you think?.....
    • Posted

      You could say very nicely that you find relating to her difficult but I know what you mean.

      Where do you live? Do you have a choice of hospitals? Different Trusts? Discuss it with your GP. If you are willing to travel a bit further you are supposed to be able to have some choice - unless they have changed THAT again too. Or ak your GP nicely to manage you - you know how to manage your problems so you needn't necessarily go to the hospital for routine appointments.

    • Posted

      I live in Norfolk....(N&N) but you are right, I try now to manage with my GP...who works more with me.....but as you said earlier...she`s so good, it gets difficult to see her, especially quickly!...not like my Rheumy!.....

      Talking about choice...my sister has RA, and wants to change, as many do at her surgery to another practise....this govermant said we could choose...but you can`t.  She is alweays being told, that you have to be in the "catchment" area....no choice at all.....rolleyes

    • Posted

      I'm fairly sure that is NOT true any longer. You used to have to live in a given area to attend a surgery but i'm sure it was changed a year or so ago, I will have a butchers...

      Yes - now I remember. Not a lot of options around N&N without going a long way.

    • Posted

      Sending you a link by pm.

      "From January 5 2015, all GP practices in England are free to register new patients who live outside their practice boundary area.

      This means that you are able to register with practices in more convenient locations, such as a practice near your work or closer to your children’s schools. This will provide you with greater choice and aims to improve the quality of access to GP services."

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