Recent diagnosis

cajaba

hi, I was diagnosed with RA about 5 months ago and am taking methotrexate. There has been little improvement in my condition so I’m also now being prescribed sulfazalasine (??)

I initially went to my GP about pain in my right foot almost 5 years ago. She agreed to refer me to rheumatology but didn’t. Because of a genetic link it was thought I had Sjögren’s syndrome and the GP started that ‘most people live with SS with no problem’. Because if that comment when the pain became worse and started to spread to other parts of my body I thought I was just a bit of a wimp! Eventually I went back to my surgery and, again, was promised a referral to rheumatology that never happened.
Third time lucky I finally saw a GP who did refer me and i saw a rheumatologist earlier this year. However I now have RA in both feet, ankles, knees, hands, wrists, back and neck.

I feel so angry with my GP surgery. Would the RA have spread so far if I’d been referred and started taking medication earlier? I can’t seem to shake off the anger but I know it’s not helping me too deal with my situation.

frogmorton

Hi @cajaba

I am just an ordinary member - you won't get the helplines until Monday they don't work weekends, but they will reply on Monday morning I'm sure.

In the meantime I just wanted to say hello and hopefully reassure you a bit about the delay in seeing a consultant. Honestly this is just not uncommon so many of us wait years to be diagnosed or get misdiagnosed first. There are so many many people here who will back me up there sadly.

Hopefully now that you have seen someone and have started (or are starting) sulfa you will start to feel some improvement soon.

Do come along in and look round the forum everyone is very welcoming.

Take care

Toni x

helpline_team

Hi @cajaba

Thanks for posting on the Helpline Online Community and sorry to hear of your situation, as @frogmorton suggests, unfortunately you are not alone with referral and diagnosis delays.

It is true that the sooner RA is controlled with medication the better. It is however good news that you are now under a Rheumatology Team (many still are not) and are being prescribed DMARDS (disease modifying anti-rheumatic drugs). Hopefully these will work well for you. If however, the conventional DMARDS don’t control your condition and calm down the inflammation causing your symptoms, there are a number of other options available, such as biologics, which you could discuss with your Rheumatologist.

Regarding your dissatisfaction with the GP services. You can raise a complaint with PALS (Patient Advice and Liaison Service) who can help resolve concerns or problems when you're using the NHS.

I hope you will find the following pages on our website helpful: 

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

and here is a link to PALS:

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

I hope this helps, best wishes,

Helen, Helpline Advisor