Just want to cry - no referral to Rheumatology

[BoBoHill]

I’ve been having joint pain on and off for a few years now. The pain is predominantly in my fingers. I also have tennis elbow. Last year I asked to be referred to Rheumatology but was instead referred to a Physiotherapist who decided my pain wasn’t due to inflammation but due to hyper-mobility, I was give some putty to squeeze and that was that.

Past few months the pain/stiffness has been getting worse in my fingers and it’s really affecting my quality of life. Went back to GP and again asked for a referral to Rheumatology. I’m concerned I have psoriatic arthritis as I do have psoriasis.

Had bloods done - ESR, CRP, and White Cell count raised. They wanted to repeat the test incase just a blip and added in Rheumatoid factor. Inflammatory markers higher on repeat test but rheumatoid negative so not getting a referral to Rheumatology!!!

I could cry. I should’ve argued and pointed out rheumatoid factor would be negative in psoriatic arthritis but I was just too upset and overwhelmed. Where do I go from here?

I mean it might not be an inflammatory arthritis but I feel I should at least be able to see a rheumatologist for assessment.

I am in a similar situation. I’ve had over 100 kidney infections and now I have protein in my urine and frothy urine. My gp wouldn’t even do extra testing on my urine sample let alone give me a referral. It’s so frustrating.

See the GP again and really tell them how much it is affecting your life. Cry in front of them and tell them how much pain you are in. Tell them you can’t go on like this. If they still refuse to refer then complain, complain and complain again. I have had an aggressive inflammatory arthritis for 9 years, negative for rheumatoid factor, but all inflammatory markets raised and I’m on a cocktail of treatment now that keeps me functioning. My GP was good, he listened to me and referred quite quickly. I’m sorry you’re having such a shit time but just keep pushing.

I would write a letter and send them a copy of this:

https://www.ruh.nhs.uk/For_Clinicians/departments_ruh/Rheumatology_and_Therapies/documents/Suspected_Psoriatic_Arthritis.pdf

if that fails and I would like to think it won’t then if there is any way you can pay to go privately then ask for a private referral. I had to do the private route and it took 2 rheumatologists but finally got there. If you are anywhere near Bath has a great rheumatology team and are very good with psoriatic arthritis and Dr Korendowych sees a lot of people for second opinions.

I have psoriasis and am a medic intraining.

If you haven't seen a medic yet then refusal to refer is exceptionally stupid given your psoriasis.

I know it sounds counter to NHS loyalty, but if you can afford it I would book a consultation with a private consultant rheumatologist (make sure they're also a rheumatologist on the NHS). Explain at the appointment that you can't afford private treatment (I assume you can't as any treatment for RA or PA ould require expensive regular blood tests), but that you're desperately scared that it's psoriasis arthritis. In all likelihood they'll assess you in the consultation and put blood tests through on the NHS and transfer your treatment to the NHS clinic. It's tragic that this happens but it's exceptionally common and sometimes you just have to do what's right for your own health as - as you say - if this is untreated psoriatic arthritis it will progress and cause long term damage to your joints.

If you haven't seen a rheumatologist *

I have psoriatic arthritis and had similar experiences- like you, I wasn't referred because of the rheumatoid factor but I had hugely swollen finger joints, pitted nails etc and they said no referral based on the blood test. If you can afford it I would pay for a private rheumatologist appointment. That's what I did and I was diagnosed in that appointment. Best of luck OP, it's miserable when it's untreated. I really hope you can get some relief soon

Similar happened to my Mum. Diagnosed with osteo arthritis but had all the symptoms of rheumatoid and other autoimmune issues.
Blood tests came back as no rheumatoid. She kept asking for another referral as she was sure she had rheumatoid. Pain when breathing for about 3 years that she kept getting told was connected to her arthritis pain.
Fast forward 6 years and breathing pain was investigated further and bloods showed rheumatoid factor.

Diagnosed with pulminory fibrosis and now with rheumatoid arthritis (the respiratory specialist put a referral back in to the rheumatologist and she waited about 12 months for the appointment)

She is now on methotrexate. If she had been diagnosed properly in the first place she would have been on the correct meds and wouldn't now have irreversible scarring on her lungs.

Keep at them.