I am so glad

That I live in an area where I see my rheumatologist on a regular basis I have had RA for about 14 years and did not get diagnosed for about 2 years because my GPs were treating me for Osteoarthritis (at the age of about 43) when I eventually got to the hospital I was in a terrible state and almost wished I could die. but My rheumy doctor was very positive he said that he could not cure me but could make me feel much better, I wasn't sure I beleived him but he did. Although I have had several setbacks since and have constant pain I don't feel so overwhelmed because when I am really bad I can just call the Nurse helpline number and they will see me within a couple of days , the rheumy Nurses are fantastic and seem to know exactly how you feel. It must be awful to live in an area where you have to wait ages for an appointment. I hope you all get the help you need soon it is such a horrible disease

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  • It would be nice to know what area you live in as my rheumy is very good as well. I am down there today for a starving blood test and i will pop in as i have a few concerns with my health at the moment.

    I am pleased to hear that you are getting good treatment.

    Sylvi.xx

  • Hi I agree. I see my consultant regularly and can always phone for an earlier appt. I also see the nurses at the hospital in the Rheumy dept on a regular basis and again can phone them if I need earlier appts.

    When I was first diagnosed 4 years ago, my consultant told me sometime later that he had never seen anyone as bad as me. I arrived in a wheelchair which I had been in for several weeks and could not move because of the pain.

    Steroid infusions helped a great deal - I spent several days as an in patient in hospital having them done. Left still in a wheelchair but at least able to move a bit more. Had to go back about a month later for 2 more days for more steroid infusions. Since then, been on MTX then anti tnf and the occasional steroid injection to control a flare up.

    The first GP I saw was pretty useless and dismissed my swollen hands and wrists and the rest of me with the throwaway comment "we see a lot of arthritis here" but didn't do anything about it! Needless to say he is no longer at that surgery and the two GPs I see regularly are brilliant.

    Hope all goes well. LavendarLady x

  • Rheumy services vary a lot in my experience. When I lived in Plymouth I trekked up to Bath because the service there was fantastic. I felt that I was treated as an individual and with consideration.

    In Stoke-on-Trent, access was more difficult but the quality was good and I felt they understood the importance of working with me as an individual.

    Now in Wales, if I go to the teaching clinic, it's good. But otherwise it is rushed and treatment is followed to a formulae not tailored to the individual. I feel that I'm a nuisance being difficult and argumentative when I have to point out that I've been on that treatment before, either without effect or with side effects or allergy. The rheumy nurses are helpful, but over-stretched and I feel that they have to work to a script sometimes. I wish they would computerise the notes at the hospital so that they could find past events more easily!

    The GPs I have seen have been excellent, except for just one who didn't bother to read my notes and told me everyone gets arthritis when they get older!!! All the others have worked really hard to listen and get the right things sorted out (even when, I could tell, they were really worried about what was happening!)

    So, if you don't get good treatment, ask again and clearly for help and go on asking!

  • Yes a bit of polite persistence works wonders I've found. My rheumy is great - apart from the fact that she's gone on maternity leave! I think each service is slightly different so need to find out what works best. Where I am the Rheumy Nurses are v.v busy so it's actually easier to talk to the Rheumy Doc! I've given my GP's surgery one of the NRAS posters to put up about the 3 S's - so now there's no excuse for them not knowing about RA. Perhaps some of the much older GPs may not have had any re-training since the modern drug regimes came in, but given how many people RA affects I'd have thought that all GPs should have some experience.

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