Confused and frustrated!

I developed acute onset pain and swelling in multiple symmetrical joints last May, and was referred urgently to rheumatology by my GP because my ESR was still high dispite two weeks of high dose oral steroids for an asthma flare. Initially the rheumatologist was helpful, and thought I was probably developing RA. At the moment I'm seronegative so apparently they won't treat me any way. The rheumatologist is obsessed with imaging my hands even though my feet are much worse, and with CRP levels. Because I'm on high dose inhaled steroids my CRP is never going to be high. I'm struggling to walk because of the problems with my feet, ankles, knees and hips, the only thing the rheumatologist could suggest was NSAID's, which I'm allergic to, so he didn't do anything other than yet another scan of my hands. I really don't know where to turn now, I'm struggling with work because I'm standing all day and moving heavy equipment. I've asked him for another explanation for my symptoms and was told I may have developed degenerative changes in all my joints on the same day, which seems just a bit unlikely!

Help.

7 Replies

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  • Can I suggest you ring the NRAS helpline and ask their advice? I wasn't aware that being seronegative meant you wouldn't be treated but the helpline will have up to date information about this.

  • I think you need a second opinion as there is something going on. Whether sero positive or negative has no effect on treatment. I was sero neg at 19 and still am 30 years later and have had various DMARD's and bios over the years. Farm

  • Hi Cliffhopper,

    Hopefully you may already have followed Matilda7's advice and giving the Helpline a ring (0800 298 7650 - 9.30am-4.30pm) as being seronegative isn't a reason not to treat someone. There's a good article on our website which explains the difference between the two- nras.org.uk/seropositive-se...

    Blood test results should be just one of many things your rheumy should be looking at when deciding what diagnosis and treatment to give. Again, there's a good section on diagnosis on our website which should help - nras.org.uk/diagnosis

    I do hope that things are sorted for you soon.

    Kind regards

    EmmaS-NRAS

  • Your story is eerily simular to mine. The first 3 doctors ignored my severe pain in my feet. I kept insisting on seeking a 2nd, 3rd and 4th opinion...Thankfully the 4th doctor figured out it was RA.

    I know how frusterated you feel and the horrific pain you are in. Please seek another opinion.

    Take care,

    Sue

  • It's horrible to be treated like this. I'm seronegative as well but the blood test that clinched it for my rheumatologist was the anti ccp which, I believe, if positive, is as good an indication as any that you have RA. I'm not a medical person but it's something you can ask the medics about when you contact them. When I had the test done I was on oral steroids so that doesn't seem to affect the test. Just keep being pro active, even though it can feel like pushing water uphill at times. Virtual hugs coming your way . . X

    I

  • I saw my GP yesterday, and she is going to write to the rhuematologist and suggest he looks again at my feet. If I still get no joy she suggested a second opinion because she isn't happy about the way I'm being managed either. I think I'll try to see someone in another hospital because I'm a radiographer in the same hospital I'm being treated in, which could get a bit awkward! Thanks to everybody for your replies, it's nice not to feel quite so alone in this, I've got to the point of doubting myself with my joint symptoms, dry eyes and Raynauds, and seem to spend most of my time crying.

  • Hi All,

    I've got an appointment to see a different rheumatologist on Thursday. I'm crossing my fingers that I'll get some answers.

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