Should I leave my rheumatologist?

I was diagnosed by my rheumatologist in jan this year with PMR and started on 20mg of pred. After a very up and down period possibly due to reducing too fast initially, I managed to get down to 15mg by my visit last week, although I had quite a lot of PMR reduction pain that particular day which I mentioned to the rheumatologist. I was then amazed to see that he had written to my GP saying I now had no muscle pain, what sort of pain did he think I had?He also wanted me to get down to below 10mg asap.

I had seen him previously four weeks earlier and had asked about being checked for vit D. He did not think this was necessary so I got my local surgery to organise a blood check. The result was 26 ng/ml, I believe a minimum of around 50 is recommended. At the last visit I asked the rheumatologist about a supplement he said 'aren't you taking anything'? He had not mentioned vit D ever. He then said I should go to Holland and Barrett and get something.

Also when I go to visit him he has started to wait by the lift for me and embraces me, kisses on both cheeks, cuddle etc. The same when I leave. I find this rather uncomfortable. He is in his 70s I am in my 60s.

I have only seen the rheumatologist (privately) not a GP, as my surgery had failed to make any diagnosis over three months last year. I have had three GPs allocated to me in that time two have left and the current one is leaving in June. I have managed to make an appointment to see her in June, there is a four week waiting list. I have talked to her on the phone although even that can take up to a week. I am not seeing them for anything else and have always been very healthy.

If I can get something sorted out with the local surgery could I just use them with no rheumatologist? The current NHS waiting time around here for a rheumatologist is around ten weeks, but I could go privately again.

20 Replies

  • Hi lizzee,

    I can't comment on your GP's but your Rheumy is behaving innapropriately, making you uncomfortable and is obviously not treating the PMR properly from what you say.

    My question is why would you continue to pay to see him given the above?

    I am sure other people will be along to give you more appropriate PMR advice.

    Good luck

  • Hi Lizzee, it's such a lottery isn't it? I can quite understand why you feel uncomfortable with your Rheumy- not only is he inappropriately intimate with you, but he is also not listening to you and your pain- such a contradiction! I am now on my third Rheumy, and finally feel that I am with the right person. Sometimes it is about personality and sometimes it is about having confidence in what they are saying and advising.

    I am sorry to hear how inaccessible your GP's are- having to wait 4 weeks for an appointment is unacceptable! My GP didn't diagnose me but has always been supportive of what I want to do etc. and does all my blood tests. I see my Rheumy privately too and at £90 per consultation every 3 months or so, I think he's good value too. You don't say where you live, but he is in Southend and is very involved with research into PMR and GCA, so is, I think, at the cutting edge of these syndromes.

    I hope you can find a better team to help you.

  • Hello lizzee, I agree with Keyes, that's totally inappropriate and unprofessional behaviour by your rheumy. If it were me I would be seeking a second opinion as far as the PMR is concerned. There can be some excellent GPs around who have the knowledge and experience to manage their patients with straightforward PMR and sometimes even those without prior knowledge are at least willing to learn from and listen to the patient. And you might be lucky enough to come across one of those in your practice. If not you can request referral to another rheumy.

    Your Vitamin D levels are too low (exactly the same reading as mine before treatment). The normal range of Vitamin D for my particular Primary Care Trust (they can vary slightly) is between 75 and 150-200. Although some Trusts do prescribe it, many don't - I was recommended to buy Lambert's Vit D3, available from pharmacies.

    Finally, I'm sure you know not to take the rheumy's advice that having just reduced to 15mgs you should now "get down to below 10mg asap"!

  • I have never been referred to a rheumatologist and my GPs have trusted me (perhaps misguidedly!) with my own reductions. A good GP is worth his/her weight in gold. What a shame yours have been found wanting. My sister, a GP doesn't set much store by rheumies. She diagnosed me very competently over the phone from New Zealand!

  • Hi Lizzee,

    Your Rheumatologist is definitely acting inappropriately in his actions and neither is he accurate in his record keeping. I would be tempted to contact the GMC with your concerns. You should certainly not be paying for this kind of treatment.

    I have had NHS care and cannot speak highly enough of it. When you eventually get to a decent GP, ask for a referral to a NHS Rheumatologist and see what you think. I am also prescribed Vitamin D and Calcium by my Rheumatologist and subsequently by my GP.

    Good luck.

    Tomasina x

  • You can start by contacting the professional body for rheumatologists (British Society of Rheumatologists) or possibly the GMC (General Medical Council). That is totally inappropriate behaviour by a registered medical practitioner of any variety and he can and possibly should be struck off. He can't work in the NHS - he's too old - and is obviously topping up his pension and chancing his arm. He's out of date and no longer competent if what you have said is true. Mind you - I also had letters that bore little resemblance to my experience in the appointment, but it still isn't right. The rest is definitely questionable at best. Time for a proper complaint procedure - and I suspect the police would help you find the right process.

    As for continuing treatment - you don't need a rheumy, a GP can provide the pred prescriptions and do the blood and BP checks you need. This paper

    is aimed at GPs to help them manage PMR and GCA and written by one of the top PMR people in the UK, currently head of the Bristol group.

    And if your GP practice can't answer questions - we can or can point you in the right direction!

  • Just read this to my GP husband Report this man to the GMC now

    Best wishes

  • Thank you so much for your replies. It makes me much more confident in leaving the rheumatologist and that I can carry on just with a GP. It is a pity that the local surgery seems to have problems at the moment with people leaving. I am feeling very relieved with all your support.

  • And as Edith has said - as I did - report him NOW. Otherwise someone else may suffer too. He might not be a Harold Shipman but it isn't professional behaviour and totally unacceptable.

  • Thanks PMRPro. I have. In fact he is not a very good rheumatologist either! He wanted me to get down from 15mg to below 10mg of pred in four weeks, not taking into account that I was in a lot of pain which he had put down to me going shopping. No wonder my CRP increased by over one hundred per cent the other day, 18 to 37.

  • I seem to have two sign ons on two different computers. I will delete one and sorry for any confusion. I am not two people.

  • Careful - you may upset one of your alter egos! ;-)

  • Hee hee, I needed a laugh! You should meet my alter ego, really scary!

  • Thank you WendyUK, I have now seen my GP who has given me vit D supplements and also said that as I am otherwise healthy I do not need a rheumatologist at the moment, but if there is a problem she can always arrange for me to see someone.

  • Hello Piglette, good to hear you have been discharged by this consultant. I remember the days when rheumatology was almost entirely about rehabilitation - rarely mentioned now; it's all about blood tests and drug treatment. There is a blood test exclusively for vitamin D. If you have been on prednisone, you should have this test and also a DEXA scan. D3 and calcium are usually required whilst on prednsn to protect bones from osteoporosis. When I had been on prednsn for a couple of months, I asked my newly qualified GP whether I needed bone protection and she said she would do a blood test. At my next appointment she told me I had a World Health Organisation FRAX score of 8.4% with a 10 year osteoporotic fracture probability', and no further explanation. At my next appointment, she prescribed Calcuim and D3 forte. Marvellous! It saved me buying them from the chemist! Hope you continue to improve Lizzee :-)

  • Thanks WendyUK. I wasn't discharged from my rheumatologist, I dumped him!! I have had a DEXA scan which was fine. The now ex rheumy did not want me to have a vit D test, he said it was not something they normally did. I convinced my GP to give me one and I was 26 which is a bit low. The rheumy then said I could go to Holland and Barrett to get some supplements, I think he was a bit annoyed as he was made to look slightly stupid. Holland and Barrett were cheaper than a prescription though. My GP has now prescribed some stronger ones.

  • It doesn't surprise me, I had a GP like this, did blood tests and didn;t look at them or ask me how I was before bullying me to reduce the dose by 2.5mg every fortnight. My markers were flying around the place like swifts and swallows! What the consultant described as 'the markers escaping the prednisone', as though they had a mind of their own and not related to receiving insufficient steroid! Glad you are well away from him without losing any sight and hopefully with no damage to your other arteries.

  • They must have been related to each other!! My blood markers were the same (pretty high) in June as Feb having gone up and down and up and down. I was diagnosed mid Jan with huge markers. As you say he totally ignored the blood markers anyway and was just interested in reducing the pred as fast as possible. I have had three major flares which he laughed off. I get angry every time I think of him and the unecessary pain he caused me. In the last month since leaving him the markers have dropped significantly and are the lowest ever and I have been able to cut down on the pred. What a nightmare he was.

  • Personally, I think stress has a bad effect on my illnesses.

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