I'm finally going for an US on my painful joints.. (lots of them!) this afternoon. I wonder if they'll see any synovial activity or not. Anxious.
What I'm really confused about is that I keep reading that RA can also involve joint effusion inflammation (which I do have in my knees); bursa inflammation (my hips) and tendinitis (hip and shoulder)! But my Rheumatologist said that my hips, shoulder wouldn't be involved with RA... I am just really not sure about this.
Anyway, I suppose that I'll know today if there's anything at least in the knees, hands, feet etc.
Wish me luck. Not sure what to wish for to be honest.... I guess I want some clear and definite answers, although of course I'd prefer not to hear more bad news. it's really hard to know what to feel when you have such health issues. My head is in total chaos and can't stop thinking and asking questions to myself. Driving myself crazy.
xxx
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regina79
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Yes, RA can involve the larger joints like hips and shoulders. But this is really uncommon early on in the RA disease process, and extremely common as a result of tendinitis. So the rheumy was probably basing the comment on your physical exam (they can feel the difference) and probabilities.
Try not to get too anxious. If the U/S shows active inflammation then you are on the way to a clear diagnosis and treatment. Which may well sort hips and shoulders too, and if it doesn’t then it’s clearer that there's another process at work.
Hi helix. Fair enough. But then, we don't know how long I had these positive antibodies.. She actually has not looked at my joints or gave me a physical examination... which I do find strange . I'll try! thanks SO MUCH for your support
You can have the antibodies for years without active disease.....some people have them all their life and it never turns into anything. So being early on in the disease process isn’t related to antibody status.
that's very interesting. It's not what I read at all. I read that whoever has positive anti-CCP has the most aggressive form of RA and also that it is likely to develop quicker than the ones who have negative antibodies. On many papers I read it says that from the diagnosis of your anti-CCP you could develop the disease from 3 months to 2 years. Also the timeline depends on how high the test was...
So it seems that there are a few factors that should be taken into account but yeah it's a difficult diagnosis and docs look for high inflammatory markers. x
That’s funny Regina; I have had same remark from mine but this was disputed by specialist nurse at a later meeting: ‘you can get it in any joint’ yes I knew that but just wish they were consistent 😉 fwiw, hip joint was one of first to go, before my hands & wrists & shoulders later. This was RA not OA as sadly i’m well aware what it feels like & both are fine with meds 🤞at mo’. Like you said, who knows how long you’ve had it & can the experts tell even ? I had 2 bouts of frozen shoulder & back pain that immobilised me a few years before diagnosis, makes me wonder now?
Yes, I totally agree! I'm glad I'm not alone in thinking this.
I think that when we feel that something is wrong, we can only trust ourselves.. and I know that my hip doesn't simply have a bursitis, as I have bursitis on the other hip too and they do not feel the same! And I agree that docs should not exclude any part of the body. It's possible that you can have it in larger joints as well as smaller. And you don't know how long I had this for... it's not exactly easy to diagnose how long you had it as I haven't take a test previously. I will definitely seek a second opinion to make sure, although I am being monitored with tests, but I just think that something is at miss. xx
Good luck with your u/s Regina hope you get some answers. My drop in centre thought mine was tendinitis when I went with hands & wrists earlier on; I don’t think it’s an easy thing to diagnose. I’m positive for both antibodies too but only found out at first rheumatology appt x
Did you have MRI or US on your hip to diagnose RA or just symptoms and positive antibodies? All I know is that my hip feels like something is not right inside the joint, plus I feel the inflammation discomfort of the bursitis.
And my shoulder problem (tendon damage out of NOWHERE) has reached my whole arm and finger! it's horrible.. I can't move it without pain, every day, all day. Same with the hip. Can't sleep or move.
I only had hip X-ray via GPS which found nothing; literally cld barely move it, same with shoulders later so feel for you, it really hurts. Had u/s on hands & wrists with blood tests at rheumatology appt which GPs organised pretty quickly when my hands went too. My hip still gets stiff occasionally as do hands & wrists but nothing like full blown flare thank goodness. Good luck with yours x
PS tell them how much pain you’re in & hopefully you’ll get steroid shot to alleviate it 👍
Oh so did they not bother repeating the tests on the hip with an MRI or US? They should have.. I had 1 steroid injection and did absolutely nothing. Only had relief for a couple of days... and I had 1 injection in shoulder too: nothing! :(( I’m going to ask for a second injection..
No they didn’t: that’s when rheum said oh but it’s not in hip lol. They diagnosed from hand & wrists & bloods ( did xrays of hands & feet too). I’m on biologics now & it’s ok thnx. Sorry steroids didn’t work for you, hope something does soon.
It’s a funny old disease, seems different for many: I don’t get morning stiffness or swollen joints (apart from hands, wrists) either or v raised bloods with flare which they always ask about too: either i’m a freak of nature or lots do ‘t fit the criteria totally 😊
That's bad What came out of the X rays? Can I ask why they gave you biologics rather than traditional immuno-suppressants? My understanding is that they rather try with the traditional drugs first and also biologics are much more expensive..
So, I just got back from Ultrasound and shoulder MRI results.. BAD bursitis plus damage tendon in shoulder. So that makes 3 bursitis in my whole body
madness.
Ultrasound guy was only able to do upper body. Apparently I need 2 separate apps! Ridiculous. They should have told me before
He said he saw lots of inflammation in my left hand and fingers. And also some in my right hand. He also thinks that my hips are involved so he will do a scan on them too next week. He thinks I should definitely start with the RA treatment ASAP. He wants me to go see him tomorrow for the remaining US but I have a work event so have to wait until next week now. So annoying. So I guess we can safely say that I have inflammation but he wasn't sure if it is Rheumatoid or just Inflammatory Arthritis. Whatever that means... he said he can't name it but there is definitely inflammation activity. x
Not a lot on xrays, tho do have slight drift on one finger. Sorry I wasn’t clear, dx 2 years ago, did over a year on MTX 😬, added Hydroxy, traditional dmards, then benepali for last 10 months 🤞. Sorry you’ve had so much trouble with u/s. Wouldn’t have thought they wanted to start RA drugs unless pretty sure ? but hope you get rheumatology to explain soon. I don’t find mine v informative tbh & go in with lists of questions now 😉 thinking back mine said similar at start then did anti ccp test, next appt with specialist nurse said oh I expect he’s told you all about it! No, just said some kind of inflammatory arthritis and RA was most common. Good luck with yours x
Oh ok. Shame about X rays at first! But at least you got your diagnosis after.
He seemed pretty sure and ‘worried’! Asked me if I had left my hand pain for ‘too long’... 😰🙈 so I’m assuming he’ll tell the Rheumatologist that I have a lot of inflammation activity on my hands alone. The lower body we don’t know yet. But he seemed quite concerned for me and wanted to send report to Rheumat. ASAP so not to waste even more time. I’m going to try my best to go back tomorrow, but I have my work Summer party!! Although I haven’t been to such events in ages cos couldn’t walk and now I probably won’t be able to stand for longer than half an hour at a time. So I might leave early... xx
Aw, sounds painful, it does seem to fire off all over the place when it starts. Hope you get to enjoy your works party and some definite answers soon. You can ask to be copied in on letters to GPs to make sure you’re kept informed x
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. I'll try! thanks SO MUCH for your support 
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