1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

I have an appointment with a Rheumy at last..what questions should I ask?

Posted , 7 users are following.

shirley40391
shirley40391

Hi after living with PMR and taking steroids for over 2 years a new doctor at my practice has got me an appointment with a rheumatologist.   I am not sure what sort of questions I should be asking - I don't want to waste the appointment by not being prepared.  Most of the information I have had so far has come from here and what a difference it has made in my life.  I feel emotionally so much better.   Any help would be gratefully received.  Many thanks 

2 likes, 12 replies

12 Replies

  • tina-uk_cwall
    tina-uk_cwall shirley40391

    Posted

    Shirley, may I ask why your GP thinks you now require the input of a rheumatologist. I see a rheumatologist, he diagnosed me. I now see him every 6 months simply for a check up - how my reductions are going, have I had a flare, etc. the rest of the time I simply see my GP who reports back on blood test results, etc.

    having PMR for 2 years is quite normal so I'm wondering why at this stage you are being referred, please fill me in. Regards, tina

    • shirley40391
      shirley40391 tina-uk_cwall

      Posted

      I have got the appointment finally because I have a new doctor.  I have been trying to find one who would take on the care I needed but not in a piecemeal way which has been my experience so far.....It has been very difficult to sort out what I should be asking for, what I should expect because no one seems to know.  Which is why I am so pleased to have found this forum.  My new doctor was amazed that I had so few blood tests and had never seen a consultant.  He says because of my symptoms improving with the steroids he still thinks it is PMR but would like a proper diagnosis.
  • ptolemy
    ptolemy shirley40391

    Posted

    As Tina says what is it that has triggered a visit to a rheumatologist after two years? Are you having trouble reducing? Are you in a lot of pain? Do you have high blood markers? PMR can normally be managed at primary level after that period of time if there are no hiccups. 
    • shirley40391
      shirley40391 ptolemy

      Posted

      I changed my GP practice because I got so fed up with lack of interest - basically here are your tablets - here is a reducing plan - bye!  My blood tests results have never been particularly high but the pain is very intense and my body responds within hours of taking steroids....I have had a flare because I didn't know what I was doing really.  This doctor seems far more interested - sadly a few tears at one appointment and the fact that i am on anti depressants (wrong spelling?) I think helped...
    • shirley40391
      shirley40391 ptolemy

      Posted

      No I haven't had a Dexascan - what is that? I am taking Vit D but only because I did some research on line! Do you know if Turmeric is any good for ONE? I have hear some good reports of it being an effective anti-inflammatory.
    • ptolemy
      ptolemy shirley40391

      Posted

      You should really have a Dexascan if you are taking pred for PMR. It checks your bone density as a side effect of pred can affect it. That is the reason for taking vit D with calcium. Also a calcium rich diet helps. I do add turmeric when cooking as I have heard turmeric helps. I am not sure if it does or not, but I suppose it does no harm. I understand beetroot is good too and sour cherries. I try and cut out gluten and simple carbs as I had heard they caused a moon face. I must admit I do have the odd biscuit! I have not eaten red meat for years but try and include oily fish, mackerel, sardines, salmon ... also nuts.
  • penelope10875
    penelope10875 shirley40391

    Posted

    Hello Shirley

    My GP finally referred me after 3 years! He didn't recognise the symptoms of a flare and I think he wanted to confirm that he had got the diagnosis right.  The Rheumy looked at my bloods which had been normal for a long time and said I needed to come off the steroids and that my pain was due to arthritis! I was actually relieved. Until I tried to reduce my steroids! That's the only time I saw a rheumy!

    Am I right in thinking that the bloods were within normal range, because I am on steroids? I am having trouble getting below 8.5. The pain is mainly muscular. I can tell the difference between PMR and arthritis pain , and, the fatigue is quite an issue.

    Fed up with the lot of them. Thank goodness for this forum. We learn much more than they know through this forum.

    Actually I do now have a much better GP who recognised the flare for what is was, which is more than I did. I was very ill for a week.

    • shirley40391
      shirley40391 penelope10875

      Posted

      Oh this is a complete nightmare sometimes isn't it?  You just don't know who to trust in  their assessment of what is going on.  This is why I find this forum so good - you speak to the only people who know really and that is the people who are suffering with you  : )
  • MrsO-UK_Surrey
    MrsO-UK_Surrey shirley40391

    Posted

    Shirley, the others have given you good advice, but just wanted to add that making a list (a little potted history) of your symptoms, blood tests, dosages, reductions, etc over the last two years can be helpful to the rheumatologist on your first appointment.  At least, my rheumy found it helpful and put it on my file.
  • EileenH
    EileenH shirley40391

    Posted

    Asking for a diagnosis at this stage is a bit of shutting the stable door after the horse has bolted!

    I wonder what your rheumy will say ...

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.