Diagnosis! Prompt? or Not?

Just wondering, when you were diagnosed with RA how long did it actually take to get your diagnosis?

Did your GP fob you off with something else or send you away with some pills?

Or maybe they were quick and sent you for Blood tests!

Or better still sent you straight for a hospital referral?

Did you see a consultant who still failed to diagnose you!

Were you put on Immune suppressant drugs straight away or maybe just given anti-inflammatory drugs.

Or even something else.

Just interested in this as I had a very late diagnosis but it was many years ago and I know things have changed somewhat since, or have they?

14 Replies

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  • Hi Mand,

    For over 4 years I was fobbed off with rsi for my hand and wrist problems, siatica for my back and leg pains, trapped nerve for my neck and shoulder pains and other reasons were pulled muscles etc, they fobbed me off everytime as if I was a hypocondriact!!

    It was only after being admited to hospital with large swellings on knees and unable to even lift my own head with esr of 180 and crp of 48 that they finally took me serious.

  • I was diagnosed within 3 weeks of seeing my GP. I was in the (fortunate?) position of having RA and as a nurse (albeit RMN), I knew what I had, but I didn't want to hear it! I had RA for 11 months before seeing my GP: a lot of damage had already been done. I hasten to add that I wasn't seen as a registered nurse, but because I was due to get married & my GP recognised this and made everything wonderful! I got married on prednisolone!!

  • My GP said RA on first visit in april and referred me to consultant.

    Two weeks later I was seen on a saturday afternoon by a consultant, it was his job to decide on my future ie,who would treat me and how. He said he would write to advise my GP what to do.

    It was a month before the letter arrived and my GP said the tablets prescribed were not DMARDS and the cream to rub on my hands was useless.

    GP then put me on Diclofenac and ordered blood tests, when the results came back showing I had RA he wrote direct to the local hospital.

    I finallly saw a consultant at end of august and began treatment.

    My GP is great, Rheumy Consultant reasonable but the NHS process is diabolical

  • I went to my GP in June 2010 who immediately made hospital referral. Had 1st hospital appointment at end of August where consultant made an urgent referral to the Rheumatology unit at another hospital. They saw me within 7 days & I was diagnosed and started on combination DMARDS & steroids by mid September.

    I did wait a long time before going to GP with symptoms as I knew nothing about RA & thought I was going a bit mad. Looking back I think I have had symptoms since my last pregnancy in 2001 & had been told I probably had RSI, carpal tunnel syndrome, OA in shoulders and post viral fatigue amongst other things. I think GP only felt confident to refer once I had quite significant bi-lateral swelling & pain in a number of joints as well as never ending fatigue.

  • It was an osteopath who guessed at RA in my case 9-10 years ago now. Although he didn't tell me that directly, after seeing him for a number of reasons, he suggested I went to a GP and asked for a blood test. This was done, GP surgery phoned as soon as I got the results and then referral to a rheumatologist who thought it might be RA, but not then symmetrical so possibly psoriatic arthritis. Diagnosis followed within 6 months whilst rheumatologist weighing up the options and seeing how it developed.

    I feel so lucky when I read the other blogs as I feel I have had great support nearly all, if not all, the way through from my GP and the hospital. Although I am now on Rituximab (which in many ways is seen as the end of the pathway of treatment) it is generally working, I still manage to work and am determined to carry on as normal a life as possible.

    As all the blogs suggest there is great variation already across the NHS, i am even more worried now about the effect of the Government's changes on the NHS with decisions, training etc being made locally and the national structure and standards being watered down.

  • Hi, i had pains in August and went to G.P in Sept and G.P sent referall straight away. I saw consultant in Oct and he sent me for xrays and blood tests, i then saw him again beginning of Dec and was started on Dmards and steriods straight away, unfortunately i had a reaction to Hydroxychloroquine and am now going on Methotrexate next week.

  • Hi, I had a couple of trips to my GP before I convinced her that it was more than just osteoarthritis and got referred to rheumatologist. That wasted about 5 months from the first symptoms that I noticed, during which I was just told to take Ibuprofen and warm baths. Took another 6 weeks to get appointment with consultant, but since then things have moved quickly. Consultant is brilliant, and I've now seen her 3 times in 2 months and she's phoned me twice. How good is that! Am on steroids & methotrexate at the moment and have NSAIDs and strong painkillers on hand if need be, plus stomach protectors & folic acid of course.

  • Hi,

    We know from National Audit Office Report and Kings Fund Report which we were involved in in 2009 that the average person with RA visits the GP 4 times before being referred with a smaller percentage visiting many more times. However, the biggest delay we know from research comes from people themselves delaying seeking help from their GP because they are unaware that the symptoms they are experiencing are something potentially serious, long term and incurable. We are therefore working to address not only the GP education aspect but raising public awareness of this wretched disease. People tend to assume that the pain they are experiencing is because they've over done it at the gym or gardening, or something similar. We have a poster which raises public awareness of the early signs and symptoms which you can download from our website or you can request us to send you some and if you or anyone out there would like to put them up in your GP surgery, public library or other public space, that would be great! Thanks. Ailsa

  • Lots of fobbing-off (although my consultants believe I had palindromic arthritis before developing full-blown RA) - on one occasion I was told I had sprained both wrists and sent away - unhappy with that I went to a walk-in centre and they said carpel-tunnel syndrome "but that might indicate RA". On another occasion plantar fasciatis, then temporo-mandibular disorder, hyper-mobility syndrome (which I probably do have as well), stress, anxiety etc.

    The problem was, at least in part, I was seeing different GPs each time at my doctor's practice. In the end I chose the GP who I thought listened best and only ever made appointments with him by name. And Bingo! He reviewed my notes, ordered some bloods and found my ESR was 100+ and within three months I had a consultant rheumatologist diagnose RA, a big depo-steroid injection, methotrexate, the works. In the end it was a real relief to get the diagnosis - not least I was beginning to disbelieve myself that there was anything substantial going on.

    The journey took at least five years, with bouts of inflammation occurring every few months and lasting a few weeks on each occasion. In partial defence of the health professionals involved, RA is not always easy to diagnose - particularly when you have the coming & going (palindromic) version. However in my case there was a fair bit of "diagnosing from the hip" and a real issue of a lack of continuity in primary care, as well as a failure to review my history.

    It sounds like you (mand) had a similar journey to mine?

    Tone x

  • hi I was ill for about 7 years before i got my diagnosis,my doctor kept telling me i had arthritis learn to live with it and gave me painkillers that i ate like sweeties i was 39 years old at the time.In the end i was so bad i had to move home as i could do nothing for myself and changed GP the first time i saw him he said just by looking at my hands "i think you have R/A and sent me to hospital 4 days later i saw the consultant and was in hospital for 6 weeks while they sorted out medications and tests,unfortunately there has been a lot of damage done and i am not responding to methotrexate and other medications so am waiting to go on anti tnf treatment as soon as i have had my next surgery....So the moral of the tail some GP's are ok if you have one thats not change GP.!!

  • Hi

    I was diagnosed with RA 2 years ago; but 6 - 8 months before that I'd had a really nasty sore throat, i didn't see the GP just treated at home. A couple of weeks later i fell out in the street my knee just gave way, I dislocated my elbow, at A & E the radioligist said he could see signs of damage previous to the accident. Then came the fatigue but I put it down to being 55 and having a nasty fall and dislocation, but it never gave up, we have our bedroom in an attic conversion and I'd be crying trying to get up stairs. I went to the GP who is brilliant she looked at me then said hang on went off to see one of the other GPs who I then found out had worked as a RA registrar. I was diagnosed on sight and because he had a link with the hospital I was seen the next day by my lovely consultant. He gave me big Pred shot and diagnosed Viral RA, but 6 months later he apologised to me and said he was sorry it was RA, so 2 years on I'm on weekly Humira but that seems to be failing, but thats another story.

    Best wishes

    Tricia

  • Hi Tricia. thanks for your comment. Sorry to hear that Humira seems to be failing, I too had Humira for 2yrs and suddenly stopped working.But along the Anti-tnf lines I also had Enbrel and Infliximab, nut sure if you have had those but they may be another option if you have to come off Humira.

    mand xx

  • Very prompt in comparison to the other comments! My RA was rapid onset and I was so ill, so fast that my diagnosis was within 3 months of first getting symptons. I did have to bother my Consultant's secretary a couple of times to push appointments through earlier but I was desperate! Even saying that though waiting for that relatively short amount of time in agony, thinking my end had come was complete torture and although pleased to finally have an answer it was still a huge shock to the system!

  • Differing Diagnosis,

    I was diagnosed three years ago with RA/Oa and gout, after usual blood test xrays etc.

    Due to being a transplant patient I was informed that the only help availible was pain managment due to the cocktail of drugs being used control renal & anti-rejection drugs.

    Anyway after about 4-6weeks ended up on Tramadol, Amirtriptiline 50md and Fentanyl patch's x 100mg along with occasional steroid injections .

    Recently I was seen by a different Consultant at clinic, after reading my notes and examining me he stated that he didn't think I had RA because my blood tests where neg for RA????

    He did state that my uric levels have been off the chart for the last two years, eventhrough I take medication to control it.

    I have had a number of gout attacks so I know what thats like!! but still have megga problems with other joints, unbearable pain, fatigue and anemia.

    My GP is brilliant waiting to have a chat with him after the lastest B/tests and x-ray reports are back.

    Look forward to hearing from anyone who can offer any info.

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