Experiences please. TIA

Hiya all,

Hope this finds you settled into 2015 and in not too much pain.

As some of you know, I'm newly diagnosed and I'm sero-negative. Apparently something my GPs surgery has not heard of. Even my lovely new gp read me my a-CCP result and suggested the result may mean my consultant will re-think my medication and treatment. I explained he thought I was sero-negative and she said "Oh?" I didn't respond, just said I'd wait until I see him. This goes along side my old GP (same surgery) who refused to refer me to a rheumatologist because my RF was normal. Im interested in your experiences and what your GPs know. Thankyou in advance.

Take care, keep warm and stay well and pain free.

13 Replies

  • Hello, I was also sero-negative and had a negative rheumatoid factor result. My rheumatologist said at the time that this doesn't mean I don't have RA and treated me from symptoms. It worked! That's been my experience xx

  • Your experience is very like my own. About 6/9 months before I went to my GP I noticed that I was loosing strength in my hands, not so much pain but they were becoming useless. I was starting to think I was developing MS. Anyhow I went to my GP who looked at my hands and decided right away to send me to the Rheumatologist. It only took about 6 weeks to see him after bloods were done by GP. He helped me off with my coat, which I thought was lovely, then he asked me to put my arms out straight in front of me.......they were bent from the shoulders......it was so gradual that I didn't notice. They curved inwards, I was amazed. I had pain of course but I just always put it down to over doing things or something else. The consultant told me there and then that I had RD.

    I am also Sero Negative and have negative RF....... My Consultant has been brilliant as has my Rheumy nurse. My GP and I have learned all about RD since then. My GP wasn't so helpful at the beginning but now fones me for updates and allows me to to be 'seen' via the fone if I'm in too much pain to drive into the town.

    I have recently had a major set back in that the last of the Bio's that I can tolerate has stopped working. I fone my GP to get stronger pain relief and he was genuinely annoyed when I told him about the Bio. He has been on this journey with me now for 4 years and has become a crutch to lean on, don't know what I would do with out him at times.........I have to tell you that my GP has a reputation (sometimes deserved) for having nil personality whatsoever....so his treatment of me is very definitely unusual!

  • So pleased to hear your journey has a happyish ending with your GP. Sorry to hear your RA isn't under control though

  • hi went to my GP with morning stiffness in hands had blood tests came back RF factor was 90 but had no inflammation so he referred me to Rheumy had more bloods done had high CCP and am sero-positive ,ive been on Hydrox since sept now symptoms have all gone,x

  • Hi--- I was in awful pain-- varying joints , usually symmetrical, for 4 years. My bloods were, and still are,:totally normal. I had a scan of my hands in September 2014 and seronegative RD was discovered. My gp and consultant were both shocked at the results and had been very very dismissive of my symptoms but are brilliant with me now. The consultant actually apologised to me for not having scanned me sooner. I was put on 400 hydrox and 15 mthx in Oct , which has since been increased to 20 mthx, and even though not pain free am feeling much much better after 3 months on the drugs. Are you on any medications specifically for RA yet?

  • I'm sorry that you had the experience you had. yes, I am on Methotrexate, started literally just before Christmas after months of pain and my previous gp telling me that it couldn't possibly be RA as my rf was normal. Saw the consultant privately in December who reassured me that I wasnt imagining it and diagnosed me with ra after a full examination. He discovered swelling in my knees as well as tenosynovitis and damaged fingers due to long term pain. Felt relief, finally I was being taken seriously. I have now changed gps (it's a big doctors surgery!) but was curious to see the experiences of people like me whose gp tells you, you are imagining it and there is no way they will refer me without a meeting with the practice partners because the funding isn't there to refer patients who have negative bloods!

  • I was lucky enough to get an nhs referral --- quite quickly actually-- but was told it was" menopausal " related!!! Oh the joys of age. Are you still having to pay to see the consultant or has he/ she transferred you to his nhs list?

  • Yes I've been transferred via my gp but there is a long waiting list! So, my gp as recommended I stay seeing him privately as the pain is getting worse as are the joints affected. As the twins turn 2 tomorrow and I'm a full time mummy, my GP feels they need to try and get the RA under control.

  • I am sero negaitve and my GP knows everything because I make sure all my specialists and GP send each other everything. It should be holistic medicine not working in silos, as one thing impacts another. eg I have afib and SVT as well as some other things and when I flare badly and am exhausted it kicks it in to high gear. Make sure your rheumy is sending letters, blood test results etc to GP and vice versa.

  • Yes, my consultant and GP are in conversation via letter. I also have a thyroid disorder so I'm used to chasing...but not as much as this!

  • I understand we should be our best advocates, but having to continually push and fight and follow up is very tiring on top of everything else. I went to see my rheumy privately as the registrars at the hospital had my levels of frustration so high I thought I couldn't take it any more. Being sero negative they all kept trying to tell me different things, thank havens the rheumy had experience in sero negative . I fit had been left up to them I would have been sent home with Cognitive behaviour therapy and panadol.

  • Hi I too am sero neg and had normal bloods everytime even though I have been having symptoms for over a year before diagnosis and back and forward to GP. It had been put down to my weight, menopause, depression and stress. At first Rheumy thought I only had fibromyalgia but because I also have ruptured achilles she asked another Rheumy to scan my achilles there and then and he also did my hands which were swollen and painful and the scan showed definate inflammation. When he showed my Rheumy and I asked if it was fibro she said that was the least of my problems as I have sero neg RD. She prescribed Sulfasalazine. Unfortunately I have tried 3 DMARDs so far MTX, Sulfa and hydroxy and have had adverse reactions to all of them. Dont know what is next but I feel they are giving up on me as I havent seen the same Rheumy twice and have to wait until April for my next appointment. think also because I believe I have a thyroid problem and I question this they dont like it and think I have a mental health problem. Wish I had a pound for everytime Id been offered anti depressants! Gentle hugs Joolz.x

  • Hello.. I am ALSO Sero-Negative.. but have ALL THE Symptoms.. My father also has Rheumatoid Arthritis and my grandfather had LUPUS. so its apparent with my symptoms, luckily, otherwise with my Lab numbers, it would NOT BE .... I understand your frustration.. and TOTALLY understand YOUR PAIN!! :) I hope that you stay positive and continue to move forward and not get frustrated, its easy to do !! If you get the right doctor, hopefully they will understand!! ... Tommy

You may also like...