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How long does it take to diagnose RA?

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maria56199
maria56199

I am a 42 year old female and have had increased inflammation markers, low iron, severe fatigue plus pain in my joints since April 2014. The symptoms first began in my hands, particularly the joints of my pinky and two middle fingers on both hands. The pain spread to both my wrists, my feet and my hips and seems to be getting progressively worse. I was referred to a Rheumatologist and had several tests, including x-ray, ultrasound and bloods. My tests showed some degenerative arthritis in my hands and feet but my bloods showed no RA or Lupus antibodies. 

The problem is that the doctors have therefore not diagnosed me with RA, even though autoimmune illnesses (not RA or any arthritis) run in my family.

On the recommendation of my rheumatologist, we are treating this "symptomatically" via my GP, who has put me on 25mg of Amitriptyline. The Rheumatologist thinks I could be at the initial stages of RA but hasn't recommended anything else. 

The amitriptyline has helped a bit but I am afraid that not having an actual diagnosis is preventing me from getting more help. I don't want this to get worse before I can get sufficient help. Everything I have read has said that it is important to stop the swelling before it gets worse. Do I have to wait until a full diagnosis? If so, how long does this take? 

0 likes, 7 replies

7 Replies

  • loulou282
    loulou282 maria56199

    Posted

    hi marie

    i had my first bout of swelling 10 years ago and was diagnosed with reactive arthritis but it was only last year after having a full body bone scan did i get diagnosed with R/A, so may take some time to get a definate diagnosis, also they wont give you a dignosis if theyre not sure, i had years to wait and knew myself it was, i had x rays which showed bones all over the place, and a scan which showed nothing. it was only the bone scan which showed the active inflammation which was the diagnosis. they have to follow the "pathway". there is no quick way to do that but just to see what happends, i was on anti inflammatories for years before being on dmards and im still waiting for the inflammation to slow down but its not. you have to fit certain criteria to go on thse things. Hate to say it but you may be for a long wait and what i found was not having a definate diagnoses diddnt change the pain.  hope you get answers soon hun. keep us informed xx

     

    • maria56199
      maria56199 loulou282

      Posted

      Thanks Loulou, 

      I guess it's going to be a long wait. Fortunately, it's not too bad yet. I'll keep taking the anti inflammatories. Thanks for your advice. x

       

  • Gail363
    Gail363 maria56199

    Posted

    Once I got into a Rheumatologist I was diagnosed that day tentatively and was positively diagnosed within a week of my appt once the X-ray results and blood tests came in.
    • maria56199
      maria56199 Gail363

      Posted

      Thanks Gail. My doctor thinks I'm not at that stage yet, just at the beggining of RA, which means I won't be diagnosed until it gets worse. 
  • penny55083
    penny55083 maria56199

    Posted

    Hi Maria,

    how frustrating it must be for you. I had atypical symptoms to start with and had every test under the sun. I thought I might have RA but the GP said I didn't have the right symptoms to be referred to the rheumatologist. It needed 12 GP visits over a period of 18 months until I got to see an immunologist who did the RA test for antibodies, which came back positive. By that time I couldn't turn a key, walk without a limp or cut food or hold a pen. Luckily I was started on medication immediately and 5 years on my symptoms have settled and I'm still working and enjoying life.  If I eat fish rich in omega 3 a couple of times a week, don't eat sweets and processed food and swim and exercise regularly my symptoms are very well controlled. I can't let up though. If you are not happy with your treatment keep going back until you get a solution you are happy with. Good luck. 

  • Rowbirdie
    Rowbirdie maria56199

    Posted

    sometimes it takes a long time for diagnosis especially if you are sero negative ( negative RF) 

    But it should be diagnosable by your symptoms / length of morning stiffness/ joints affected/ progression of disease. If any of those increase I would ask for a referral to rheumatology again as the NICE guidelines say early diagnosis and aggressive early treatment important........ And that is the problem long term with using painkillers/ anti inflammatories as it masks the clinical symptoms somewhat.

    But at this stage that s all you can do unless you see it getting worse.

     

    • maria56199
      maria56199 Rowbirdie

      Posted

      Thanks for the advice. I'm seeing the rheumatologist again in March. My symptoms have progressed and I'm hoping to avoid long term or irreversible damage. Fortunately, it's still not that bad and does subside significantly with Naproxen (500 mg).

      Thanks again

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