confused after ultrasound results and now really worried!

[Angieb1983]

Good evening everyone. I’ve been diagnosed sero negative RA for a year now and been on mtx and toczillizimab but still unable to walk without an aid. Pain every day. Knees swelling on an evening, hot and red. My hosp cons is changing my biological to Baricitinib. I’ve had an ultrasound today of my hands, wrists, elbows, knees, feet and ankles. Now I’ve been really struggling with pain and mobility, especially in both knees. I asked the radiographer if I had any active inflammation and she said yes in a couple of joints, but lots more grey changes? I asked her if the active inflammation was in my knees and she said no!! Now I’m shocked cos it’s my knees that are still swelling and hot and red almost every evening!! So my concern is, does this mean my knees are permanently damaged? Or could there be active inflammation deep within my knee joints that an ultrasound can’t detect? I’m so worried that this is it now, my knees are shot. Won’t get better. Always need a walking aid! Does anyone have any info or experience of this? Painful even when not active inflammation? Sorry for long post but in the last 18 months my life has been turned upside down!!! Thank you x

[helixhelix]

I know that early on in my diagnosis I had knees that were permanantly like footballs, hot and red. And I was worried that they would never recover, but finally they did. However I never had an ultrasound at that point so don't know if active inflammation would have shown up or not.

Ultrasound is good for looking at soft tissues, and should pick up everything unless you are very overweight as dense tissue can block the signal. I believe fluid is black and tissue shows up as grey. So it might have been that the radiologist was trying to explain that tho' no active inflammation there was still something like synovial thickening which shows that those joints had suffered from Inflammation. One of the ultrasounds I had was a colour one, and the inflammation showed up as bright red so easy to spot! Did they show you the screen while they were doing it?

However an ultrsoumd is only as good as the person operating it and interpreting it, and they have been known to miss things. Talk to your doctor who should be able to explain the results in detail.

[Angieb1983 in reply to helixhelix]

Hi Helixhelix,

Thank you for taking the time to reply. I will talk to my consultant at my next appointment as last night the pain in both knees was bad and as usual they both flared. I took photos to show him!

I am still learning about this disease as only been diagnosed a year.

I only had the ultrasound because they asked me if I would be part of a study, this biological I’m going on is very new to RA patients. But we worry enough don’t we without added worry! Hope you have a lovely day, thanks again for reassuring me xx

[helixhelix in reply to Angieb1983]

The good thing about being in a trial is that ever thing is checked and double checked, and you get much better monitoring. Hope it goes well for you.