I've had RA since 2009 but I didn't start to get any real symptom control until late 2012 when I was put on the combo of injected MTX 20mg and Leflunomide 10mg with Celebrex 400mg.
My jaw, ankles and feet are in bad shape - extensive joint erosions shown on MRI scans. My shoulder and hip are now going the same way and an x-ray showed some 'wear and tear' in my knees. Yet, when I am examined, my joints (apparently) are not swollen but I only ever get my hands and wrists properly examined - everything else gets a cursory glance! My clinic don't test ESR routinely but it has always been high when I've insisted upon it being tested. My CRP is nearly always normal.
I commented about my eyes numerous times and asked for a referral. Rheumy and rheumy nurse both kept saying "dry eyes are normal with RA" but eventually, my optician saw a problem and referred me to a specialist. I have inflammatory eye disease and it's left scarring. So, we know there is inflammation going on!
I feel like because my RA has never really affected my hands or wrists that badly and because my bloods don't reflect my symptoms (or at least not the ones that my clinic seem to prefer!), that I keep getting fobbed off while my joints are eroding. They sort of shrug at me when they get the scan results and at my last appt, rheumy nurse said there is no point scanning bothersome joints as they already know I have RA. But I feel they are not recognising that despite clinical appearances, something is going on because my joints are getting worse. Despite what it sounds like, I get on quite well with my rheumatologist and the nurse but it seems they don't know what to do with me!
I don't know where to go from here.
I'm really sorry this is so long! Thank you for reading.
Hi. I really hope that Wooly/ Luce comments here because its sounds as if she's in quite a similar boat to you. For me I'm in the opposite boat and have achieved remission type freedom from pain at times, but because I can't tolerate higher doses of MTX or the other DMARDs I've tried to date, and because my ESR has always been been higher than it should be I'm not classed as being in remission. I have no signs of erosion and rarely get visible swelling - and if I do its often soft tissue or tendon related. Almost all of my problems have been in wrists and knuckles which seem to preoccupy the consultants but if I have back ache or hip pain or non joint pain and swelling that's of no interest to them. My GP surgery that prescribe and monitor me say they don't see why CRP is a good measurement for RA and only take my ESR regularly. Last time me CRP was taken it was about 19 I think but that was a year ago.
Have you been offered biologics yet? It sounds to me as if you need them and I don't think its acceptable that you have obvious erosion and they aren't aiming to try and pause this for you with biologics. Perhaps you could write a letter to your rheumy team along the same lines as this question. Ask if they think this is acceptable? In my view its not and it maybe time for you to kick ar*e! Its good you get on with them because it will make a letter from you even more punch. Hope you get something better very soon. Tilda x
fruity cake.. your clinic/ consultant sounds like mine??!! not enough swelling !! were in the country are you ?, second opinion time coming up soon ?? for us both??
Have you ever been assessed for spondyloarthritis rather than RA? Spondy joints show erosions, but don't always get swollen, because the inflammation is in quite a different place and type to RA. Neither CRP or ESR is diagnostic anyway, as some folk just don't show changes in those no matter how much inflammation they have. Is your eye inflammation iritis or uveitis? if so, then thats another very strong pointer to spondyloarthritis, and should be taken very seriously.
I would go to your GP with a support person (spouse, friend, family), and state very clearly that you don't feel that your inflammatory arthritis is under good control at all, and you want a second opinion with a different rheumatologist, preferably one who specialises in spondyloarthritis so you can rule that out as a possibility. Say that you are extremely concerned about your eyesight with the inflammatory problems not being under control, and the links between eye inflammation and autoimmune rheumatology disorders.
Firstly, thank you for the replies. Sorry I didn't respond sooner, I was out clothes shopping this morning and recovering (sleeping!) this afternoon!
Tilda - I have not been offered biologics because my DAS score is about 3.5 now and I think it has to be 5.1 to qualify. At my worst, I sat at DAS 4.9 for 18 months because of lack of visible swelling. As it happens, my previous rheumy has gone on long-term sick, so I'm seeing someone new in a couple of weeks. Fingers crossed that we will get somewhere. I am taking my mum who is far more assertive than me. Part of the problem is that I sit there and say "I'm ok" because I feel anxious. I do write things down but perhaps just writing things and handing it over would be easier? Not sure why I have not done this before. Thanks for the tip and for the advice.
Summer - I'm just outside of London, where are you? I have considered another opinion. I will see how I get on with new rheumy in a couple of weeks.
earthwitch - Interestingly, spondyloarthritis was my original diagnosis. I changed rheumatology clinics because the one I was first at was a difficult journey from my home and at the time, I didn't drive. My current clinic changed my diagnosis to RA. I have nail psoriasis and I am again wondering if I have psoriatic arthritis especially as I don't appear to be classically RA. That said, PsA was suggested by first rheumy but I wasn't classically presenting that way either! The ophthalmologist who is very experienced said my eye problems were common in people with autoimmune types of arthritis. I can't remember exactly all the terms he used but he definitely said "inflammatory rheumatoid eye disease". He said he'd send me a letter, so when I get that, I'll go armed to my next appointment! Thanks for your reply!
I don't know why they are so reluctant to diagnose spondyloarthritis, and it really annoys me when people get switched to RA, when they are seronegative and its presenting as spondy. I'm really glad you are seeing another rheumatologist. Do make sure that you say what your original diagnosis was, and also the eye stuff and the psoriasis. Its no wonder your DAS scores aren't high enough for biologics - they use completely different disease scoring for PsA, ankylosing spondylitis and for axial spondylitis (the forms of spondyloarthritis that you can get anti-tnfs for), because, as you have realised, swelling isn't something that is diagnostic enough for spondy to include in disease assessment scores.
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fruity cake you should have access to a good range of hospitals in your location.. think to me oxford is the nearest one rated as good though it is still quite a way for me and parking is bad there x
Hi there,
I nearly responded to you this morning but got tied up in knots because we do have some important things in common, as Tilda says, but also some differences.
Anyways, the key thing is that my RA has tended to erode my joints very quickly too &, like you, I think that this is the one glaringly obvious big issue that my rheumy should be attending to .... he is to a certain extent but there are some definite sins of omission in my view.
I too have high ESR most of the time and I'm lucky in that it is ESR that is measured in my regular blood tests, not CRP.
My most seriously damaged joints have been swollen for ages. However recent x-rays showed that I have damage to both big toes & both thumbs & while my wrists are swollen my feet & toes never have been. My rheumy department's reluctance to do imaging is what I consider most remiss about my treatment - I had to nag for ages for those x-rays.
However, importantly, at some point my rheumy started calling my disease 'inflammatory arthritis' more often than he calls it RA & acknowledging that the diagnosis could change. He has also indicated that he will rely on his clinical judgement more than DAS scores to decide if Biologic drugs are required. At my last appointment my DAS was 5.7 I think, so I'll qualify for Biologics anyway if it stays so high. However, my next appointment is in 2 weeks & although I've been feeling cr*p at times, my ESR has finally started to come down apparently! So while I might be quite happy to stay on DMARDs if this apparent improvement continues, I would also want extensive imaging to monitor whether my joints are still getting damaged despite lower ESR etc. I've definitely sustained joint damage without all the obvious 'red flags' before.
Phew! Sorry for writing so much but I thought I'd better explain my situation in detail so that you can compare & contrast. Surely with all those erosions you qualify for Biologics? Surely such extensive damage overrides the DAS thing unless your rheumy has some way of showing that your RA is no longer nearly as erosive as it has been? I think my speedy damage is the main reason why my rheumy has hinted that he wont' cling to the DAS criteria for Biologics. Perhaps you could go back to your first rheumy who thinks you may have PsA as it is a bit easier to qualify for Biologics with that diagnosis.
Please get assertive with your rheumy. It's no time to be shy. I think we all have to pull out all the stops to get the best possible treatment - my husband laughs his socks off at my attempts to be 'charming' at rheumy appointments & believe me that does not come naturally!
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