Why does my Rheumy seem reluctant to diagonis RA

I have all the classic signs of RA. I have had numerous blood tests that show something inflammatory going on but the RA & anti CCP tests came back negative.

I have had X-Rays on my fingers & knees that shpw OA but Xrays Rhuemy did of both hands and feet which do not show any inflammatory arthropathy. So why am i in so much pain & diiscomfort? Wrists, fingers, fet & toes the worst & getting worse since i 1st saw my Rhuemy

Rheumy reluctant to say Sero Negative RA but inflammatoey ostoartheritis yet he also said that OA very rarly inflames. Rheumy states they treat both conditions the same. Have started on Hydroxychloroquine but takes 3-4 months to get in the systen si still waiting. I am relying on steroid injections every 4 weeks to keep me going as i find i then slow, down,stiffen up & become sooo exhusted if not kept topped up.

I feel that it is more Sero negative RA but can't understand the reluctance frrom my Rheumy. Do you think i shuld get a second opinion?

12 Replies

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  • It sounds as though you're Rheumy is treating you as having arthritis, whether it's Oseteo or RA or a combination of both. The diagnosis is just a diagnosis, what is important is that you are being treated, having a firm diagnosis probably won't change that.

    My Rheummy just says I have a combination of both types of arthritis even though my inflammatory markers are virtually negative.

    I started on Hydroxychloroquine it has helped but I need to add Sulphazalazine, but am having to stop that due to side effects.

    I also take amytriptiline to help plus Meloxicam but also need co codamol 3 times a day.

    Hope the drugs kick in soon but go back if they aren't working.

  • I wouldn't get too hung up on the precise diagnosis - it seems you've got an inflammatory something-arthritis and they are treating it with one of the standard approaches. And yes one of the problems is that things are slow to take effect, so I'm sorry to say that's par for the course. Each drug usually takes a few months to really get working, and then they need to see how effective it will be before deciding whether to add in more. It is a horribly frustrating (and usually painful) period, and all I can suggest is taking careful note of your symptoms and getting appointments booked in as soon as you can so you can push for changes if things not working. My rheumy said that the reason she doesn't like to throw every drug at you straight away is a) you then don't know which one is doing what and b) the drugs are strong so she wants to use the minimum necessary to do the job to help protect your others organs like your liver.

    And as many of us have discovered getting the inflammation under control doesn't necessarily stop the pain and exhaustion, this is a very unpleasant and mean disease. But no sign of inflammation on your x-rays is good as it does mean that you're unlikely to have your joints getting damaged at the moment.

    Have you tried other combinations of painkillers and anti-inflammatories, as they can work quite well. Also non chemical approaches such as ice packs and warm wheat packs and wax baths. And gentle stretching exercises.

    Of course you can always ask for a second opinion, it's a choice that should be available. But hopefully things should change very soon for you now, it you'll suddenly start to get relief, so fingers crossed that it'll get loads better.

  • I too had negative rheumatoid factor and ccp antibody negative but my consultant said that with all my symptons etc, as he put it in my letter "I think she has sero negative rheumatoid arthritis and would benefit from Methotrexate". I'm feeling the benefit after nearly nine weeks now, so I urge you to persist . After all with this disease I'm of the opinion that the patient knows best!

  • Meant to say that also my hands and feet did not show any degeneration!

  • I was told by my rheumy and my GP yesterday that it's best not to get too hung up on names. My rheum factor was positive but my anti-CCP negative so on that basis rheumy said " we will give this a working name of sero-negative rheumatoid arthritis, but keep an open mind that could change". GP explained yesterday that it doesn't really matter if it's RA or PA or other type - it's inflammatory arthritis and that needs to be treated and that's what counts. It's confusing that they are telling you "inflammatory OA" though I agree although my rheumy said "arthritis means inflammation of the joints" which confused me as well! TTx

  • Hi

    When I first saw the Rheumatologist they said i had sero negative rheumatoid arthritis and I questioned it also. He said he felt the blood factor test is too inaccurate and leads most people and gps not to refer to the Rheumy zx they think it then cant be ra, which upset him greatly. He said most of the thinking now goes on things like clinical examination and ultrasound examination which on our RA is very obvious. So he said forget the "label" you have RA and will be treated for RA so I was glad he is up to date!! And i also have inflammatory osteoarthirits which again is treated the same way so two for the price of one!!

    Hope your treatment starts to take effect soon and dont forget to ask for good painkillers and ones that actually work for you! Axx

  • Hi Allanah - what is the difference between inflammatory OA and RA then? I thought it was the inflammation that was the difference, because OA is also destructive isn't it but RA is an autoimmune disease and OA is wear and tear? How do they differentiate between the two if both have inflammation? TTx

  • Well apparently in my shoulder i have oa that is inflammatory??!! Well that what they told me, as around the joint which is inflamed is the ligaments and they are also inflamed, so u know as you say its still hard to say what they mean, I'll ask them next week and let u know unless someone else knows the details?

    axx

  • This was in the Arthritis Today magazine: "For most people familiar with osteoarthritis (OA), the term “inflammatory osteoarthritis” sounds like an oxymoron. That’s because we typically think of arthritis as being either inflammatory (such as rheumatoid arthritis [RA]) or non-inflammatory (such as OA). However, there is a form of OA that is clearly inflammatory. It typically comes on suddenly in middle-aged women, affecting the last (closest to the fingernail) and middle joints of the fingers." You learn something new every day!

  • Hi Jazz69 my rheumy was the same and after 6 months of monthly steroid injections decided to start me on 15mg MTX. Sadly this week I have to start 20mg because my DAS score is high. Don't worry about a name for your condition at least your being treated and not dismissed. Good luck with your meds hope they work for you. Xxxxxx

  • I fully understand why people get so upset at not having a diagnosis, as far as our mental health goes it makes things much easier when we know what we're fighting. Plus, if requesting addaptions at work or, claiming disability benefits it makes life much easier if you have a name to put on the forms. I do feel for you and hope you get answers regarding a diagnosis soon.

    I and many of my A.S friends had to fight for many years before doctors would diagnose us (they don't like to label people) and knowledge of A.S is still very poor within healthcare.

    Plus, there are many other arthritic conditions besides RA, Fybro and Osteo, just as distressing and causing just as much damage to bones, ligaments/tendons, joints. Where RA is clearly visible on peoples hands, A.S attacks the spine/neck, S.I joints in the lower spine (sometimes other large joints), diagnosis could take many years of pain before it showed on xrays and by that time there was to much unrepairable damage done.

    A few years ago when working with an organisation supporting disabled people, a research grad and I did a study with and for disabled people on; 'Relationships between disabled people the professionals involved in their care'. We found a very high incidence of depression, lots of tears/distress and uncertainty in the early years prior to and after diagnosis.

    Also, the constant pain, poor mobility and no answers from the medical fraternity led to no end of distress and suicidal thoughts amongst some disabled people AND on rare occasions their carers. Some said they felt their doctors or social workers thought they were 'Putting it On'!

    In fact once disseminated the results proved to be quite depressing and a shocking indictment of some Health and Social Care staff.

    I used the results of the study to raise awareness of hidden disabilities and carry out presentations for social workers and their managers. I'm pleased to say many professionals within care work said quite openly "They were shocked by the treatment of disabled people and their carers by SOME of their staff".

    I do wish you well, don't stop fighting and insist on a proper diagnosis if not for anything else but for peace of mind and knowing what your fighting. At least for now you do have the knowledge of knowing your being medicated correctly and hopefully and name will come soon.

    Beth xxx

  • Well yeap I have osteoporosis RA sjogrens scleroderma blepharis . inrore it it comes to try us .

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