Confused.com

[Hapi72]

Hi,

I was given a questionable diagnosis of 'inflammatory arthritis with enthesitis' in Feb and put on Sulphasalazine, then saw another Rheumy end of August and given a steroid injection as my DAS score was 3.28. After the injection, I felt brilliant, took a few days but my pain went down significantly and has stayed down. Had scans on my hands on Tuesday which showed no active disease, my X-rays in February were also clear. I'm now wondering if I'm going mad and the pain in my hands, feet and knees is in my head.....

Could I have something other than IA, my pain gets worse at night and I'm now confused and concerned that I will be discharged and taken off the medication, don't think I can face the prospect of that based on the amount of pain I'm still having with all the drugs im taking

Thanks in advance,

Sarah.

[Hidden]

Hi there,

I know we can't do amateur diagnosis here so please bear in mind that I don't have any medical knowledge. But I do have psoriatic arthritis which often causes a lot of enthesitis. The entheses are the points at which tendons join onto bone. Since starting Humira my disease is well under control - bloods are fine, swollen joints have finally gone back to nearly normal & I feel good generally. However I do get a fair bit of enthesitis pain. So I'm just saying that while your pain could have any number of causes, psoriatic arthritis might be a possible one to consider. Enthesitis doesn't result in a lot of inflammation so it's just possible that it doesn't show up on scans, I'm not quite sure.

Do you have any osteoarthritis at all? Sometimes inflammatory arthritis causes osteoarthritis pretty quickly and that is painful too of course.

Don't let your rheumy tell you all is well if it isn't. Sometimes we need to politely dig our heels in .... persevere, get assertive, tell it like it is etc. etc.! And another option is a second opinion i.e. another rheumy. Loads of us have been down that road - there's so much variation in how rheumys approach the different kinds of inflammatory arthritis.

[Hidden]

It sounds to me as if the Sulfasalazine isn't doing its job properly. If you have pain still then you should be seen by the rheumy soon and the areas which are most painful should be examined by them and if possible ultrasounds done of these painful joints to confirm or exclude inflammation.

I have a diagnosis of RA but have never shown much swelling, apart from hands when diagnosed, and for the past few years have very little joint pain apart from occasional periods of intense stiffness and locking joints.

However I do have terrible nerve pain now in my peripheries and high inflammatory markers. I'm no longer on any DMARDs because I've failed to tolerate three.

What I'm trying to say is that i've learned the hard way that these diseases can overlap, morph and occasionally even disappear I believe. You may have a mixture of Spondyloarthrits and OA and the OA might be dominating just now.

So things are often far from cut and dry and rheumies often bide their time waiting to see what direction each person's disease will take before committing to a solid diagnosis. There are over 200 types of arthritis and many more autoimmune diseases - some very rare. So unless you have clear cut blood markers for inflammation (ESR and CRP) and are clearly sero positive it can be much harder to get a firm diagnosis. I have one but still it's not following a classic path at all and my doctors are baffled.

[Hapi72]

Thanks both of you, my bloods came back borderline for RF with slightly raised IgA, I don't get much swelling but the Rheumy noticed it on 3 finger joints hence the steroid injection and I do get a lot of pain, especially in my feet and ankles which leaves me hobbling most of the time. I don't think I have any osteo but then I've only had X-rays of hands and feet and now the hand scans, My mum has psoriasis but I dont, so maybe PsA....

I have to say I was totally unprepared for this disease as I guess we all are, it is so unpredictable and just odd but everyone on here is so helpful when people have questions. Its nice to have the support, it's def needed!

Thanks,

Sarah.

[Hidden in reply to Hapi72]

Re PsA, check out your nails - mine was diagnosed via one dodgy looking toenail which I'd thought just had a fungal infection. About 80% of people with PsA have some nail changes though not all have psoriasis.

I've heard that rheumys will sometimes listen up to descriptions of how 'function' is affected rather than pain alone on the grounds that pain is so subjective and peoples' pain thresholds differ considerably. You could keep a diary of exactly how the pain in feet and ankles affects you e.g. any difficulty / slowness on stairs, uneven surfaces, poor balance, inability to do things you'd normally do e.g. standing to cook, going round shops, anything at work that's trickier than it used to be and so on. And of course pain and swelling etc. can be recorded too.

I think this self-observation and preparedness is really important when there's uncertainty about a diagnosis. Could go either way - over time, if the pain subsides, you might come to think that actually you are still able to live normally and that your diary doesn't show much evidence of disease activity. But on the other hand keeping a diary can be an eye-opener - we tend to adapt and minimise our disease accordingly, even if we're feeling miserable about it. I did this for some time. I'd look back and 'weed out' any symptoms that weren't too bad, especially if they were one-offs, but charting the recurrent symptoms and the way they affected my life made me very sure of my ground when talking to my rheumy.