Ultra sound scan on feet & hands

[sallym123]

Been 4 my ultrasound scan today on my feet & hands. The lady said nothing was showing up on it. I feel like I'm going mad, with this pain & no1 believes me. Feeling really low

[ITYFIALMCTT]

I wonder if it might be worth your while to look at this trial (if you're waiting for a diagnosis) and see whether or not you might be eligible for it?

nras.org.uk/the-appipra-study

I sometimes think that it's not that people aren't believed it's just that the treatment paths for inflammatory arthritis involve medication for which there have to be clinical findings in the blood work or on imaging in order to demonstrate that it's something for which the drugs can be effective.

If people don't have synovitis that shows up on ultrasound and they are (thankfully) too early in the disease process for bone erosions to show up on X-rays, and there are no markers of high inflammation in the blood work then most of the current drugs might be of very limited use in either changing the disease process or managing pain.

[sallym123 in reply to ITYFIALMCTT]

Thank u, I will look now

[Nettac]

Yes, it's frustrating isn't it. Though my hands showed some osteo at the time. Later my feet did show inflammation, particularly in the tendons.

I reckon pain is felt long before anything shows up.

[sallym123]

I feel so frustrated, I've got to wait 4 the consultant to write 2 me with the results, which will take 6 weeks

[ITYFIALMCTT]

sallym123 Did you have your vitamin D level measured? If you're deficient, did your GP advise you about supplementation as it's surprising what a difference this can make (sometimes).

I hope there's a trial or similar that can help you.

[Gnarli]

Hi Sally. I know exactly how you feel. I am diagnosed and on 25mg MTX but my bloods show <5 crp, the joints show no inflammation and they hurt like heck. Flu-like symptoms, exhaustion and nausea. All the joys that RD can bring. I feel I'm being treated like a neurotic. I don't know what the answer is but wanted you to know you're not alone. Wishing you better

Jan

[sallym123 in reply to Gnarli]

Hiya. My scan came back normal but consultant wants 2 see me again 2 discuss options xx

[Gnarli in reply to sallym123]

Let's hope they have good news for you xxx

J

[ITYFIALMCTT]

I'm taking heart from the number of studies/trials that are looking to follow up people who present with RA symptoms but don't have the findings for a diagnosis. They are conducting one in Leeds (iirc, Chapel Allerton) and it looks from the Appira Study as if similar ones are in progress elsewhere.

I'm particularly interested that Appira looks to treat people with symptoms but no diagnosis, if I've understood the protocol correctly.

Seronegative arthropathies are understandably difficult to diagnose but it looks like it's been a chicken and egg because there's been relatively little decent clinical research into making the diagnosis more straightforward. Possibly because the current biomarkers and various imaging techniques aren't suitable. I've been reading about the greater information that is available from very high res. imaging but not only is it expensive but it comes with potentially substantial risk because the radiation dose is much higher than with the conventional imaging.

ETA: I'm faffing around waiting for additional blood work and imaging after an appointment for which the consultant reported the "likely diagnosis" is Psoriatic Arthritis.

I've edited the above for misinformation following correction by Lucy11

[Lucy11 in reply to ITYFIALMCTT]

There is no ionizing radiation in MRI's. CT scans have loads more radiation than plain X-rays but MRI's use magnetism, radio waves, and a computer to produce images of body structures not radiation--are you saying that very high resolution MRI's are in fact not magnetic resonance imaging?

I so hope that they find an answer for you soon and that it is the most benign of all possibilities. I also hope one of those clinical studies help direct you to proper and swift treatment!

[ITYFIALMCTT in reply to Lucy11]

You're spot-on Lucy11 - the very high res. thing is a research instrument and can't be MRI. There was probably something about using a hybrid CT in there (I should have paid appropriate attention).

I'm having trouble locating the study as it's possibly embargoed until some time in 2018 and (for various reasons) I sometimes see several hundred abstracts/papers a day). It's maddening because it was particularly interesting as to why some therapies like anti-TNF don't work for some people.

NB: I couldn't find a way of doing 'strike-through' so I edited my original post with a note about the correction.

[ITYFIALMCTT in reply to ITYFIALMCTT]

Just to reply to myself, this is not the paper that I had in mind, but this is another evaluation as to why some therapies can seem to fail in some people with RA for whom obesity might be a confounding factor:

"These results suggest that obesity is not associated with more severe or refractory RA, but

rather that obesity may bias clinical disease activity measures and thereby reduce the likelihood of achieving remission based on clinical assessments."

"These results support previous studies demonstrating that RA patients with obesity have worse subjective disease activity measures at baseline and poorer response of these subjective measures to treatment.[3,4,15,16] Inflammatory markers such as CRP, although considered more objective, may also be elevated in patients with obesity independent of RA disease activity."

"This study utilizes clinical trial data that includes rigorous assessment of clinical disease activity measures and blinded MRI scoring at regular intervals. A 􏰂􏰃􏰄􏰅􏰆 􏰇􏰈􏰉􏰊􏰆􏰉􏰋􏰆􏰌assessment of disease activity does not exist and MRI may not capture all aspects of RA disease activity. MRI does, however, provide an objective measure of inflammatory joint disease, a key and defining feature of RA. ...In conclusion, although obese patients with RA are less likely to achieve DAS28 remission, they have similar rates of achieving low MRI activity. This study addresses an ongoing controversy about the impact of obesity on RA disease activity and suggests that obesity is not associated with more refractory RA. These results highlight the critical role of the clinician, whose challenge is to recognize the importance and limitations of disease activity measures and to consider the impact of comorbidities on disease activity scores and symptoms.

"

eprints.whiterose.ac.uk/117...

[FionaHerts]

I believe you! I'm going through the same! To the Rheumatologist looking at my feet they look pretty normal, but I can't stand on bare feet, can only walk short distance (in trainers and insoles)before my feet are agony, have had bilateral achillies tendonitis and plantar fasciitis for over a year now and have lost my mobility!

At my last appointment I told the Rheumatologist (registrar) that I couldn't walk and she gave me a patronising look and asked whether 'it was because I got a little pain in the middle of my heel' from plantar fasciitis. I burst into tears! They have absolutely no idea!!!!

I insisted on hand and foot X-rays as hadn't been done for many years (never had a hand X-ray!) and ultrasound and a podiatry referral and I'm going back again this week (5 months later) with the results. Ultrasound didn't show any inflammation, because the appointment came through three months later on a very hot dry week and my feet were better that week (typical!), but did show bilateral bursitis causing the daylight sign with my toes. Haven't had the X-ray results yet and will get them at my appointment.

If your feet are painful I'd push for a podiatry review at the hospital. I've had that done, multiple things wrong all related to inflammation. A muscular skeletal podiatrist will be able to see things the Rheumatologist isn't maybe trained to see and can also prescribe insoles, I've had rubber ones which help.

I also went to my GP who referred me for an ultrasound of the achillies tendons because the Rheumatologist wouldn't refer me for that as she said the tendons were still intact! My ultrasound revealed tendonitis and thickening of both tendons.

It's so difficult if you don't have hot swollen joints to get anyone to believe there's a problem. I wish they would understand that it's not just joint erosions that lead to loss of mobility, damage to tendons and ligaments does too! I'm hoping to be listened to now I have some proof of what I've been telling them, that my RA is not well controlled.

Best of luck fighting your corner.

Fiona

[sallym123 in reply to FionaHerts]

Thank u so much, u described me down 2 a t regarding not being able 2 walk far. I'm going back 2 doctors Monday & will push 4 answers

[Esorgem]

Hi Sally. I thought I could bring a little peace to mind. It is very possible for you to receive a diagnosis, and treatment for arthritis even if your bloods and scans are negative. I have repeated ultrasounds that come up negative, negative RF and normally low inflammatory markers, nothing major but my pain is major. The best thing you can do is provide your specialist with photos, without photos, seronegative arthritis is not going to be diagnosed. It's not that you aren't believed, it's just there is criteria they have to follow and unfortunately it's a long process. You won't receive a diagnosis from your GP, you need to get a referral to a rheumatologist and take photos so that they can see physical evidence. If all they have to go in is your word, then it is understandable that nothing has changed. Don't feel crazy, you aren't. There's so many people who have the same issues as you. I think that patience is the most important attribute because it gets hard, and it's painful to wait and wait but it gets better xx

[sallym123]

Thank u so much. I will do that

[Helzbells]

I feel your pain - quite literally. I have anti-ccp positive RA but all my scans and bloods are normal. Yet I can barely walk and am on morphine patches. The rheumatology dept have been worse than awful. They've accused me of having a low pain threshold and making out I'm in more pain than I am. Ironic as I've had tests that prove I've a high pain tolerance. It is the debilitating flu like symptoms and nausea as well as the pain that have destroyed my life. I've been told I have been caught early but that I need to wait until I have damage before I can have treatment. Completely against what is regarded as best practice