Rheumatologist and advice help

Hi, This is my first post. I have been reading the questions and answers on here for some months. I was diagnosed firstly with PMR, then with inflammatory arthritis and for the last two years seronegative rheumatoid arthritis. I was on methotrexate tablets to start with - 20 mgs, then because of the sickness I was experiencing I went onto the injections 25 mgs. However, my blood results apparently were not good and I was not getting any relief from the pain so they took me off methotrexate and put me on leflunamide instead - currently 20 mgs. I also take pregabalin as the rheumatologist has also diagnosed fibromyalgia. My ESR levels however are still very high. They went up to 112 at one point about 6 months ago and the rheumy said they were a false result, despite the lab running checks to make sure the results were correct. She did run the tests again and rang me and said they were normal!! I know they did come down because I have to have blood tests every 2 months because of the leflunamide, but I have also been experiencing periods when I get quite a high fever for a day or so. Because of that my GP has been keeping an eye on my ESR and other bloods, and the ESR has been running around 65. I am getting concerned because the pain is getting worse and I feel I am being ignored by the rheumatologist. Advice as to whether I should be concerned would be appreciated.

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  • It really saddens me to hear of the so many negative experiences of seronegative patients and dmards, especially mtx. Seems so unfair that these patients have been forced to juggle with these meds for such a long time enduring so much suffering only to come to the conclusion that they do not work and all too often these patients are not eligible for biologics. I really hope this is not the case with you. In this situation however it can be an idea to complement your therapy by looking into antiinflammatory diets and other ways to support your body. I am seronegative and have successfully been able to do this. Lots of info about diets and experiences in this forum. Take care, I can only imagine how frustrating it must feel☹️

  • Thank you. Will have a look. So painful at the moment. Feeling desperate c

  • Hi Pat13

    I'm diagnosed with seronegative RA after initially being told it was reactive arthritis and then inflammatory arthritis.

    I was told I would be given the RA dx because I needed it for biologics and 'whatever it is you need this treatment'.

    For me the seronegative bit made no difference to the treatment or the diagnosis process. My ESR and CRP were both regularly way above 100 and I have needed 3 joint replacements so far, so there was no question as to the severity of the condition.

    I also went through all the DMARDS and either had no response, couldn't tolerate side-effects or had a bad adverse reaction.

    Ultimately I was put on biologics and after trying infliximab (had a reaction) and enbrel (didn't work) was put on Humira which has kept me in remission for the last 8 years or so.

    So as frustrating as it is it sounds like they are doing the usual things, trying each DMARD and if that doesn't work trying another.

    Depending on your DAS score biologics may be an option for you at some point but there are a few hoops to jump through first.

    You'll get there, it can take a bit of time though unfortunately.

    Good luck.

  • Then again you could just take the risk and start with diet. If the diet doesn't work you'll reach the DAS score for biologics and now without the ill effects of Dmards ( that may not have an effect anyways🤔Perhaps something for seronegatives to think about?

  • There's no harm in adopting a suitable dietary regime in conjunction with a medical approach. Personally wouldn't avoid meds totally because I feel that you are increasing your risk of permanent joint damage and in my experience that's not very nice. Whilst you may 'avoid the ill effects of DMARDS', you may suffer permanent damage to your joints and the balance of evidence shows that early treatment (if you're lucky!) helps to reduce this damage and leads to better outcomes. As per this recently published study:

    onlinelibrary.wiley.com/doi...

    I'm pretty sure that in an alternative reality where I'd gone straight onto Humira and avoided all the ones that didn't work (and therefore 8 years of uncontrolled disease), I would have avoided the permanent damage I have had to multiple joints. But the problem is nobody knows which med might be 'the one' for which patient, and for now at least, biologics aren't the first choice in the NHS so it's a scenario that would never have occurred.

    For me at least avoiding meds early on in the course of the disease is a risk not worth taking and can mean you miss the 'window of opportunity' that may mean better long-term outcomes.

    All IMHO.

  • Thank you both so much for your advice and support. This disease seems to throw up so many different issues, anaemia, eye problems and fever apart from the Joint pain it's so difficult to understand. Just hope that my rheumatologist comes up with some help for me soon.

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