Need a good rheumatologist please

Was diagnosed with PMR in April 2015 after 4 months of terrible pain. I was unable to get out of bed as I was in severe pain. I started on 15mgs of pred and have been taking the dose down slowly, and have been on 7 mgs for the last 2 weeks. I went to the doctor this morning and she said I was not reducing quickly enough and she wants to refer me to a rheumatologist. I live in the north east of England and would like anyone to recommend a really good rheumatologist please, as I hear many complaints. Some seem to have more knowledge and interest in PMR than others. Thank you

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  • Hi Patricia,

    Well - I started on pred for PMR in December 2014, and am currently down to 8mg per day. I am not a doctor, or rheumy, but it doesn't seem to me that you are tapering too slowly. My experience is that the patient probably knows best about when is the right time to come down, and at this level, I would reduce only by a half mg at a time, after about a month at each level, and only then if the pain seems relatively minimal.

    I am sure you will get good advice from more experienced members of this forum.

    Good luck.

  • Patricia, there are probably many people 'looking in' who would like to be on 7mg after just 14 months on steroids! So well done. But if your GP wants to refer you to a rheumatologist, then so be it - they might have a bit more knowledge about PMR than she does, and realise that there is no one size fits all with regard to how long it takes to reduce the steroids. Plus you are around the dose where your adrenal glands will be having to kick back in with their pre-steroid supply of cortisone (natural steroid) which has been suppressed by the long term treatment, and the slower you go at this stage, the better, remembering that each new dose is a higher percentage drop than the previous one. As Charlie1boy has said "the patient probably knows best about when is the right time to come down" - you know your own body, so just listen to what it is telling you. Well done on doing so well thus far.

  • Thank you charlie1boy and Celtic. I really appreciate your responses as I follow this forum and you are always so helpful. I thought I was doing rather well. I was dropping the pred slowly, and was going to stay at 7 for the next four weeks as I do have neck and arm pain in the morning so was taking it slowly. However I do have high colestrol, am osteopenic, and close to diabetis 2 which has been brought on by the pred. Which is why they want me to reduce quickly. But how can I?

  • It is possible that the other things might improve on a lower dose of pred - but the PMR won't! If you drop too far then the PMR will be back with a vengeance if the underlying autoimmune cause is still active - and the only answer will be to go back to a higher dose, which is exactly the opposite of what she wants to achieve.

    Celtic has explained it - keep at your slow reduction, not least because your body needs to adjust to the lower dose as it starts to produce cortisol, the body's own natural corticosteroid. And there, slow is best.

  • Patricia, I can understand their concern and wanting you to reduce quickly in view of your other conditions but you can only reduce as and when symptoms allow. Both cholesterol and diabetes can be managed with treatment if necessary. If you reduce too quickly you run the risk of a flare which will then involve increasing the dose, thus gaining nothing. You are nearing a dose where any possible side effects become minimal anyway, so please don't be tempted to rush things at this stage.

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