4 years with treatment RD to be told l don't have it!!

Hi everyone, l was diagnosed with Seronegative RD, PMR and Fibromyalgia 4 years ago and have tried various D Mards, some with no success and some with disastrous effects ( loss of hair, a week in hospital which thanks to Methatrexate which left me with Pulmonary Fibrosis )

I saw my rheumy consultant this week to be told there were no more meds for me to take as l have tried them all.

She gave me a steroid jab in my ankle, second one as it has been swollen for months.

I asked her about biologics and she said no they were not for me but to continue to take 7 -10mgs of prednisone daily ( previously she was emphatic that l was to reduce them to 5mgs ) depending on how l felt!!.

Then she said l would be discharged as l wasn't on D Mards, when l questioned this she said l probably didn't have RA!!!!!

I am totally confused by her attitude and worry for the future, any advice please.

15 Replies

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  • I'm not surprised you are confused and worried! I dread this happening to me as it very easily could. It's not as if she told you that you are in spontaneous remission and don't have anything wrong is it or you are pain or steroid free is it?

    I would make an appointment to see your GP asap, hoping you have a reasonably good one, and discuss and ask for second opinion or new referral.

    I am on my fourth DMARD now, having also been diagnosed with seronegative RA four years ago. Because of intolerances I've had to stop three other DMARDs to date and it really is hard to be always wondering if it's RA or something else - or whether this drug is going to be the wonder drug or make me wind up in hospital again.

    Was she putting all your symptoms down to PMR and Fibro do you know? I can't see how she can possibly discharge you while giving you a steroid jab for a swollen ankle? I think you are really going to have to fight your corner because it's just not on. Good luck and please don't be too disheartened. Twitchy

  • Thanks Twitchy, l was going to make an app with my GP for this week.

  • Not a good way to be told things by your GP, there must be something because you don't get any swelling with fibromyalgia, best of luck to find what you need answers for.

    Philip

  • Thanks Phillip x

  • It really can't be easy for you but please remember you don't get any swelling from fibromyalgia, so if it comes to your doctors saying what you have is not caused by fibromyalgia.

    take care and stay with here with us because we a load of big softies really lol.

  • something similar to this happened to me about 18 months ago. I would recommend that you seek a second opinion from a rheumatologist. They depend not only on blood results but the physical examination of your joints (mine does toes too) and also a scan to show the level of swelling. My GP helped me obtain this second opinion but I did a bit of research on the rheumatologists in the local hospital, including, discreetly through some helpful people on this forum. I hope you get some clarification soon.

    Cathie

  • This all sounds extremely confusing. I just don't understand why a rheumatologist would prescribe steroids for a patient and then discharge them. I think you should ask for a second opinion, which basically means a new rheumatologist. Preferably in a different hospital in case they close ranks.

    Seeking a second opinion can be a bit of a long haul but it's a very common thing to have to do. Worked for me. An interim option is to see a rheumy privately. It's a bit expensive but a long-ish consultation with a good private rheumy can help considerably in terms of getting more clarity.

  • Have to agree with everything said by postle2. Saw more than three rheumatologists locally and they all said I had Fibromyalgia after being diagnosed by the first one. Got very poorly as time went on and then had to see a maxillofacial consultant regards my new salivary glands problems. I only mention this part as it was the first time I was given steroids and they made such a different to many of my other symptoms. From there went to see a new rheumatologist in another area. A different diagnosis, new medication, a long haul but worth it. Sometimes these things are very hard to diagnose and get more complicated with time. Blood tests are only part of the picture, mine were negative. Also if you consider how many different types of arthritis and autoimmune conditions are out there how can an initial thirty minute consultation always come up with the right diagnosis. Add to that notes are not always correct and you may see a different rheumatologist every time. Hard for the doctor and the patient. x

  • You could still have seronegative inflammatory arthritis and it not be RA - spondyloarthritis is also seronegative, and a whole heap harder to diagnose as there aren't any accurate blood tests.

  • I would be fearful too. The advice of seeing your GP is great. Also, ask to see another consultant for their opinion. I would do some research into other recognised forms of treatment the NHS provides for patients with your original diagnosis (Google). Biologics have been marvellous for my case and I am very grateful. I did use Humira for a year prior to the Tocilizamab infusions I now receive. *Personally, when my consultant said I didn't quite qualify for treatments after ALL DMARDS failed, I went nuts at him! If I recall correctly I think I said, What do I have to do, crawl in on my hands and knees before I qualify? This illness affects every aspect of my life and thus far you haven't been able to 'manage' my condition with any satisfaction.

    I would encourage you to say something similar and add;

    I NEED your support to find a resolve, not be pushed off the cliff because of the lack of funding or lack of skills in diagnosing conditions effectively. I need help please to understand what condition I have and why it was misdiagnosed originally! Why I don;t qualify for certain treatments and what the prognosis is for me in the short term and the long term.

    Ask also for them to explain why you no longer qualify for dual care (Consultant & GP).

    Big soothing hugs & lots of strong vibes coming your way.... go for it, don't be pushed around :) xxx

  • I cant believe it a similar thing has happened to me in the last 2 weeks. I was diagnosed March 2014 with sero neg RD and fibro (I have had osteoarthritis for 5 years). The Rheumy I saw called in another Rheumy and asked him to do a scan on my hands and feet as I also have ruptured achilles. He did this and they both said I have sero neg inflammatory disease and immediately prescribed Sulfasalazine. I had trouble with this drug and others I have tried. Since then I have never seen the same Rheumy and 2 weeks ago saw a Registrar who without examining me or listening to what i had to say said that as the drugs I have tried dont work and my blood test shows no inflammation I dont have inflammatory disease. My last blood test was 6 months ago. She took no notice of the fact that both my hands and feet were swollen and red (as they always seem to be). I asked my GP for re-referral or second opinion and he was reluctant but when I explained that 2 senior Rheumys diagnosed me with inflammatory disease after a scan but then a registrar discharges me saying I havent got it after not even examining me, so he has re-referred me. Wait and see now but I am really tempted to write to the first Rheumy I saw to complain about being dismissed so easily. Is it just to get the numbers down? I am so angry about how they have treated me. Gentle hugs Joolz.x

  • Thanks so much for all your advice, l really appreciate it and l will ask my GP for a referral to another consultant.

    Are there any people on this forum who are under Tun Wells and Maidstone trust??, l would love to discuss any issues they have had which have been resolved.

    Many thanks again

  • Yes, I'm Tunbridge Wells and Maidstone. Feel free to PM me if you'd Like.

  • Hi siddy12,

    No wonder you are confused. I have put a link below on how to get a second opinion on the NHS website:

    nhs.uk/chq/Pages/910.aspx?C...

    Hope this helps you

    Regards

    Beverley (NRAS Helpline)

  • Thank you so much for your advice Beverly and Jl l will message you x

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