Ultra sound scan long wait- don't know where to turn next?

[126Jessie]

Hi looking for some sensible non emotional advice!! I'm in Humira, metho recently stopped, and have felt poorly since last sept. Three consultant appointments later with different opinions sent for ultra sound scan ( hands) but told that is was a turn up and they scan worst joint situation. My hands are up and down like a yo yo depending on what I do - very reactive. My shoulders often give me prolonged pain and I currently have limited movement in my left shoulder. Anyway, scan today sore thumbs- other than that hands a bit puffy and shouldering pain- frozen of sorts. Scan involved my knuckles in my hand being looked at and my thumb on one hand. He only did this when I said it hurts here!!I also mentioned my shoulder is the sorest at this moment and was ignored for a second time!!He said borderline inflammation- ok you medication is working.i was unable to speak as this is the worst I have felt in 14 years so I just left, sat in car as the tears came tumbling down again! Not sure what I was expecting but where is this pain coming from then? Are my joints damaged? I phoned my rhuemy nurse to say I am feelin very sore and that he only scanned my hands and I am a bit confused I'm now waiting on a call back. This, as I say has been going on since sept and due to a mess up with my appointments I have been waiting since feb for this scan- just feel deflated and don't feel too assertive about getting how I am feeling across to yet another consultant at the end of June, which seems a long way away too. Any advice most welcom as ever! X

[Hidden]

mine vary too!! I Have scan may 28th,my consultant unsure!!, , does not inspire my confidence, or is she slow , careful and cautious I DONT KNOW??

.If you have seen three are you happy with any of yours?, IF so contact the one you are happiest with?. They use this as their guide unfortunately and my scan might be equally unhelpful on the day?, they are using mine to look at inflammation the same as yours.

May be you could have a steroid injection for your shoulder and or physio? x

[Hidden]

I am very sure that it is the job of the Rheumatology dept. to explain what RA is doing to us as much as to treat us. This is a distressing disease and some of the distress stems from confusion, uncertainty, fear of what's happening in joints & what might yet happen.

From what you say you are clear in your own mind that you have to get your concerns and requests across to your Rheumy in June but finding it hard to believe that he or she will listen & respond. I don't think there's any easy way round this - I think you are going to have to plan the main points that you'll make, and how to convey them most clearly, and then psyche yourself up to do it. Have you got someone who can accompany you to give support, help to steel your resolve or even politely & firmly intervene on your behalf if they see the need?

My Rheumy department's policy about imaging also foxes me. But I have found that they will x-ray selective joints if I request it strongly enough. I am somewhat confused as to whether scans or x-rays are better for RA-affected joints ...... I think some people on here say that scans are best for showing inflammation & x-rays better for showing joint damage .... not sure. But in any case my x-rays have always shown various degrees of damage unfortunately so I know they do & can show that. I also understand that RA can cause pain and mobility issues without there necessarily being permanent damage in joints. My half-baked observations are not what you need though ....... you need all this clarified really well by your Rheumy.

Hopefully your medication IS working at protecting your joints but you have not been reassured enough, you need more reassurance after all that pain & you are going to have to ask for it. But it is obviously not working nearly well enough for your overall wellbeing or pain control. Those things seem to me to be important questions to cover in June.

If you can't wait till June and you haven't heard anything helpful yet from the Rheumy nurse I think you should phone back and basically say that uncertainty and pain are still getting you down. I'd probably play it by saying something like 'I've been thinking about all this and I realise I haven't really explained just how difficult things are ...' rather than blaming them from the off.

I bet I'm just repeating stuff that you've already been over for yourself - in which case it's just support I know, just agreeing that it's your Rheumy dept. that's being less than helpful & I'd feel exactly the same in your situation. Do ask for what you want because what you want is perfectly reasonable.

Luce x

[earthwitch in reply to Hidden]

you are right - scans generally show inflammation a bit better, and xrays show damage. Scans are really excellent for proving enthesitis, which is inflammation right where tendons join onto bone (common in spondyloarthritis), and can also show collections of fluid in swollen joints. If you already have a diagnosis though, its probably not necessary to have any additional imaging, as its not going to change your treatment, unless the rheumatologist is thinking that there is something else going on, or that you might need surgery.

[Hidden in reply to earthwitch]

I find it difficult to get baseline imaging done, let alone additional. I have aggressive RA & I like to know what is happening in my joints - quite apart from anything else the degree of damage has some bearing on what I can & can't do - as I have relatively little pain that's one warning mechanism that I can't rely on.

[126Jessie]

Thank you so much for taking the time to reply. @ summer the top rheumy who is very matter of fact explained things to me perfectly and I felt in safe hands - she gave me a steroid and said we need a plan B but unfortunately since then Ive seen young registrars who are slightly less experienced in my humble opinion and not the best at listening. I will ask to see the boss though!It's was just so good to read you and I are somewhat in a similar boat. You do feel like you fight a battle on your own each day and that no else could even get close to understanding it @Luce-Thanks too for your comments, you have given me a much needed bit of courage, your first paragraph hits the spot as to how I feel. I am a very much get on with it kinda gal and I am not a happy bunny just now with the pity party that I am close to getting stuck in! I like the how difficult things are, its a real good sentence to start with and I am going to get my head sorted out with all I need to say. I never take my hubby along as strange as it may be I have always gone in on my own and I would fear for what he would say- bless his cotton socks!!! Anyway, after my wee injection of good advice from you both I made a phone call and I am awaiting an earlier appointment to see my nurse and I will start with the I am finding staying in full time employment really hard ( not had a sick day yet!!) I have constant brain fog, no memory and the pain in the morning is wearing me down as the day progresses with puffy joints playing a game of tig depending on which task I take on. Oh and my shoulder has is the worst, I have lost movement and find it difficult to open doors or extend my arm or do anything with it that requires strength! I think I may need to go and practise this so that the assertive words come out!! Thank you again and I hope you are both having a lovely day- We have some nice sunshine heretoday, hope you do too xx

[126Jessie]

Thanks EarthWitch, you really are a wise one! I think they were checking that Humira is still working of sorts although I am still in a lot of pain it seems to be controlling my ESR so that must be good. Just been floored for so long with the pain and lack of continuity of care.I am sure the stress of it has played it's part too.I have felt one step away from tears too many days of late and that's not me. I always need a plan to keep my spirits up and the sympathetic voice of my rhuemy nurse was enough to sort me out coupled as ever with the super support on here! Thanks so much for taking the time to reply. I hope you are well x