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Hi just had a diagnosis of seronegative ra. I've had pain & tiredness for 40 years( I'm 53) but only when I've really pushed for a diagnosis by going privately, have I finally got a diagnosis. Also got fibromyalgia, OA and APS. I was told by a rheumy 2 years ago that it was "just" fibromyalgia but was told by a brilliant physio that I should keep chasing as it was more than that. Starting methotrexate in a month but just so disappointed that it has taken hundreds of gp appointments to get here. Had a steroid injection yesterday but am actually in more pain. Has that happened to anyone. I don't normally moan so much and am very happy to get a diagnosis lol.

12 Replies

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  • Sometimes until the jab kicks in you can feel worse hopefully by the weekend your feel better good luck with the MTX .

  • Hi Rosiemay --- ouch-'all that time for a diagnosis -- I thought I was bad. Like you my physio kept telling me to keep pushing for answers and I waited 4.5 years to get treatment. Try not to worry too much about the medication -- I started methotrexate nearly 5 months ago and am feeling much better on most days. Whereas beforehand I felt ill nearly every day. You will get lots of advice from people on this site-- I certainly wouldn't have coped very well without popping on here and asking questions. I am also zero negative and think that when the inflammation doesn't show up in the blood that symptoms are sometimes ignored.

  • Hi im seroneg with psoriatic arthritis .. I was diagnosed 18 mths ago . 13 yrs after my first symptoms. In on metho and sulpha and in a much better place now xx im helping a friend who was diagnosed with fibro and clearly has psa like me . Doctors are stubborn creatures

  • I much like you norfolkjo!!! Exactly - 18 months ago, I got the diagnosis when it is the REAL reason I had sporadically been visiting the GP for 13 years for different ailments! I am on Metho and Humira and still trying, after 18 months, to get off steroids! I am also helping a friend that was misdiagnosed with fibro and then re-diagnosed with PSA. It is such a relief to have a diagnosis after getting to the point where I had no hope! Meds are all trial and error!! It all takes time too!!

  • Hiya Rosiemaye & welcome to the community. Unlike you I was diagnosed very quickly but also unlike you I'm seropositive. It's often the case that seronegative people are more difficult to diagnose but to have suffered all that time without a connection to RD being made seems quite remarkable & just pleased for you in a way that you aren't seropositive otherwise who knows how you'd be by now.

    I hope once you start on MTX you'll start to see a difference. I'm one of the many who have done well on it, coming up to 7 years so I consider it my lifesaver but do be aware it is no quick fix. It could take anything up to 12 weeks to reach it's full potential though you may be aware your symptoms decrease the nearer you get to the "light at the end of the tunnel" experience!

    Steroid injections can often make you feel worse before they start working on inflammation but give it 3 or 4 days & if you feel no different contact your Rheumy nurse for advice.

    Oh, & don't worry! It seems to me you've every right to have a moan, but compared to some of us, me included, you're a lightweight lol! :)

  • Hi Rosiemaye,

    Sorry to hear you've had such a battle to get a diagnosis but glad you've found the community. You can also find more information on our website nras.org.uk or call our helpline team on 0800 298 7650 if you want to talk / have questions any time.

    Best wishes,

    Ruth Grosart

    NRAS Digital Media Manager & HU Admin

  • Hello and welcome. Sorry I'm rather ill with flu just now but just wanted to extend the warmth others have offered and say that I have seronegative RA too. However mine only took 9 months to diagnose and treat. Makes me appreciate my GP more for the prompt referral when I read of stories such as yours. Hopefully the MTX will work brilliantly for you. Twitchy

  • Hello and welcome! I'm a new dx too, only five months ago now, and I've been having symptoms for years (though not quite so many as you!) I'm seronegative and on mtx injections. I was really sick from the mtx to start with, but I'm down to just sleeping the next day. My energy levels came up very quickly, but it's still not controlling the inflammation or pain. You don't come across as moaning even a bit, so don't worry about that :) zabat

  • The steroid injection can take up to 2 weeks to really kick in. It should provide some energy, pain relief and well being for some time after. The methotrexate may have to be adjusted and might help to lessen pain if it relieves the inflammation.. After that point, maybe some more medicines to deal with fibromyalgia will be prescribed. You have a few different types of pain going on....each one might require a different treatment. I live in the USA. X

  • Hi , I'm sero negative but got diagnosed quickly! Just shows you we are all different!

    I hope the drugs kick in quickly for you and no your not moaning, your just trying to say how you feel and that's what this site is for I think!! Xx

  • Hi,

    Thanks for the kind replies. It turns out that the steroids didn't do much for me at all, which kind of worries me. Although I have a firm diagnosis because of a scan of hands and feet, I thought if steroids didn't help they may rethink the diagnosis. Time will tell. Rosiemay

  • Just a little update. It seems I have overlap (I'm not sure if its called syndrome) so I have RA but I also have partial Lupus. I had been saying this for years as I have so many of the symptoms but again don't test positive.

    The Methotrexate finally started helping after 4 months and I started Plaquenil recently. I have possible temporal ateritis but by bloods are not showing inflammation so GP won't give steroids. But I can barely stand to comb my hair and have pains in my temples. So will just have to see how that one pans out.

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