rejected referral

[QueenBee1989]

hello,

I posted not long ago. I’ve had a positive Anti-ccp test of 28.3 but the rheumatologists have rejected my referral - they have said that it is a low titre and that my CRP is normal and with the gp saying they observations of my hands and feet look normal they are happy to not see me and don’t think that it is RA. I feel they obviously can’t be too worried. I just feel so confused. My symtoms are a painful foot ( it actually comes and goes which is odd) and I get a che in my hands. I’ve recently had a swollen sore finger but I did pull it whne I was making my bed so I think it could be like a sprain.

I just feel worried that it is RA and it’s left and goes untreated.

I can live with the pain it doesn’t stop me from doing anything but it’s just there! But I wanted to checking as I do have 3 other auto immune diseases which affect the skin only.

I just wondered has anyone else had this or heard of anyone else having positive anti ccp results and not having RA.

Thanks guys x

[medway-lady]

I don’t know but look up Morton’s Neuroma and see if the symptoms fit for your foot. It might be a case of just wait and see. I hope that you don’t have RA and are feeling better soon.

[Madmusiclover]

Try ringing the NRAS helpline and see what they suggest.

[benhemp]

Sounds a bit like my case. Have they considered psoriatic arthritis?

[Scottishlad]

It is still possible that you may be in the early stages RA. There is no definitive single test for RA. It is diagnosed through a range of tests and by observation of physical symptoms. The treatments can have serious side effects, you won't be prescribed any medication until the doctors are convinced you have the disease.

If your symptoms get consistently worse please go back to your GP.

[cyberbarn]

Like Ben I ended up having psoriatic arthritis. But it was the GPs that refused to refer me.

I think Rheumatology is now in crisis around the country, although there are still pockets of good practice and enough clinicians. There is also the Advice and Guidance system that GPs use. I know the government has said it will be rolled out but it is already used in many places, and they can talk to a rheumatologist (if they can get hold of one) before they refer. But when the NHS as a system is so overwhelmed it often feels like the default is to not refer.

And like you I read how you were supposed to get on top of the arthritis before it causes damage, but I am not sure how they came up with that slogan, as there will be many people that are not referred and just told it is osteoarthritis. Live with it.

Practically, you could either refer yourself if it is available in your area or asked to be referred to a podiatrist. They are the experts in feet, and will know far more than the GP about your feet. Sometimes podiatrists can, well, not so much diagnose, but wiggle their eyebrows in the direction of a diagnosis, and you could use that as a way to see if you need a referral to rheumatology. And in the mean time they may well be able to do something about the foot pain.

I was finally referred to rheumatology, it took two years. It was another year for various tests and the diagnosis of psoriatic arthritis. I was tried on various medications but had side effects to them so had to stop. And now they won't give me anything. I still have swollen and sore hands, feet, and pain over my SI joints and in my hips. So they will just end up having to pay more for social care eventually as I get more disabled by it. Their fault, not mine, I did what I could! And I am looking forward to the day when I can say, in the words of Spike Milligan, 'I told you I was ill.'

[trailblazer]

Have they considered Palindromic RA? That's how my symptoms presented nearly forty years ago now. I'm now (since a became Pre Menopausal) diagnosed with an aggressive form of RA which is again triggered by food.

[RAat13]

Anti ccp can also indicate many other connective tissues diseases, lupus and others.You know your own body so keep pushing and be persistent. Good luck 🙏🏼

[Wobbies]

Get checked privately by a rheumatologist if you can afford it.