Options?

[sarah2110]

I have sero positive inflammatory arthtitis and have been on tocilizumab iv for 2 years now. Bloods wise i have normalised esr etc however i am still experiencing chronic pain in my hands, wrists and elbows. In the morning it takes almost an hour before the pain dampens down. My issue is my consultant doesnt seem interested because there is no swelling in those joints. Just had an ultrasound and there is no evidence of any damage etc,but the pain is excruciating. Ive had a steriod injection that wore off within a couple of weeks. I have no idea where to turn. My consultant makes me feel like this is all in my head or that all im trying to do is get drugs! Do i try to get advice from another rheumatologist? Is it even a rheumatology problem as the bloods are normal? Should i see a different speciality consultant? Arrrrghhh! I just dont know where to turn. I know there are people out there worse off than me so sorry to you but i dont know who else to turn to.

[Hidden]

If you knock the elbows slightly r finger does it hurt alot

[sarah2110 in reply to Hidden]

No my hands and wrists feel like they are on fire constantly. The elbows just ache.

[Hidden in reply to sarah2110]

Morning Sarah 2110 I do have the same feelings as you burnig but mine is only in my joints Dr just keeps saying inflamed joints and tells me to take ibuprofen getting a bit peeved now I know this hasn't helped you sorry

[earthwitch]

ESR and other inflammatory markers aren't always positive in inflammatory arthritis, so you could still have inflammation with normal ESR.

It might be worth getting a second opinion., and if you can find a rheumatologist who has an interest in spondyloarthritis, then they may be better at checking whether your arm pains are enthesitis rather than synovitis. Enthesitis (inflammation at the point where tendon joins onto bone) doesn't always show as swelling, but believe me, it can be incredibly painful. An ultrasound should show up enthesitis, but if they were looking specifically for RA bone damage and synovitis, then they may not have actually noticed or reported the signs of enthesitis.

[sarah2110 in reply to earthwitch]

Thanks for the response. Im glad to hear there actually could be a reason for the pain and not just in my head. Ill start looking into a specialist of spondylarthritis asap.

[alioli58 in reply to earthwitch]

Thanks for that @Earthwitch

I am having symptoms like @Sarah2110 and am not convinced it is necessarily RA.

Await blood results & X Ray results on 30/11/15

Food for thought & will read up on the above.

I don't always rely on Doctors diagnosis as I may have omitted to tell of symptoms relevant to case.

Cheers. 😃

[oldtimer]

Let's start with the fact that all pain is in your head - that is where we all feel it. What you are saying is that you believe that the rheumatologist thinks that you are making it up? That you say you have pain because you want powerful drugs that make you feel awful?

It is much more likely that

he/she knows how to treat inflammatory conditions

he/she doesn't know how to treat pain when the inflammation has (apparently) settled

Ask for a referral to a pain clinic? And look at other ways of relieving pain - TENS machine, hot and cold bathing, wax baths, distraction, exercise...

[Hidden]

I attended a meeting recently where the guest speaker was an eminent rheumatologist and immunologist. He was asked about neurological pain (different to neuropathic he explained). He said that it's very common with RA and he believes it is because the initial RA pain triggers a neurological response which then messes about with the nerve pathways to and from the brain. This can go on for much longer than the joint inflammation - perhaps our nerves never fully recover.

Have you tried drugs such a Amitriptyline, Gaberpentin and Duloxetine yet? I couldn't tolerate them myself but many people find them very helpful.

My ESR is probably soaring just now but my new GP says that the lab in this area won't do ESR tests anymore unless apart from for PMR. My CRP has come back only slightly raised so my new rheumy says that my excessive pain can't be caused by RA. I feel terribly disappointed by this because I'm not on any treatment currently and feel sure the pain being caused by systemic inflammation - but unless it comes back in my joints they won't take it seriously.

Perhaps this eminent speaker was right that this kind of pain isn't going to be helped by immunesuppressant drugs but I feel it should be part of the way our disease is scored. He agreed with me but said that it is measured in the global assessment as part of the DAS28. However when the consultant asks you how your arthritis makes you feel on a scale of 0-10 and you aren't showing any sign of swelling it's very hard to give a high score even if quality of life is poor because of the pain. So I understand that you feel your rheumy isn't believing you. They probably do but have no good answers.

I've asked to be referred to pain clinic but my GP won't refer me until we hear back from my rheumy - it's been 11 weeks now. I think Earthwitch makes a good point about enthesitis but how to get it diagnosed and treated is another matter entirely. Switching rheumies appears not to have helped me much because I suspect they close ranks often.