A waiting game?

Hi, I'm new to this site and having read a lot of the posts, think it's a fabulous resource for people with RA. I've not been diagnosed with RA but am having symptoms which have caused my GP to refer me to a rheumatologist. Unfortunately, in my health area there is currently one rheumie doing the job of three so my wait might be a long one. My RF is positive but the CRP test was normal (I think). Another GP in the practice suggested that a PV test should be done and I'm waiting for that result to come back. My only symptoms are painful toes, a very tender thumb and jaw pain (for which I have been prescribed sustained release ibuprofen because I just couldn't cope in the mornings with the jaw pain). As the day progresses things generally improve. I was really just wondering if anyone had experienced anything similar and know what it might be as it could be some time before I get an appointment.

6 Replies

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  • Welcome darlin. I'm no expert obviously and can only speak from personal experience. It's only a few months since I was diagnosed with RA, for years I put up with numerous pains and aches thinking it was what becoming older was about, now that I know I have RA I wonder why I didn't put them all together before!

    I have had repeated episodes of painful jaws over the years that was put down to grinding teeth in the night and was given a mouth guard by hospital dentist. I had stenosing tenosynovitis (trigger thumb) in both hands requiring steroid injections which helped immediately almost. I have also had trochanteric bursitis (hip pain) which I still have. Unlike your Doctor mine took a long time to put them all together. Of course that doesn't mean that in your case they are all RA related, but they might be.

    So, yes, I have had thumb pain and jaw pain, not the toes thankfully that must make it really difficult for you but I'm sure that others here will tell you that they do.

    Sorry to hear that you will have a long wait to see a rheumatologist, meantime take good care of yourself.

    Moira x

  • It's reassuring to hear (in that perverse way!) that I'm not just a silly hypochondriac! My jaw pains are not teeth grinding related which I think Is why my GP was keen to refer me. I do feel bad for whinging when many folks on here suffer much much more than myself. Thank you Moifoi for your reply, hopefully I will find out more eventually...

    KatyMary x

  • Hi, it is just so wrong you have to wait! You need to have an anti ccp test and if positive start on medication. I know its not fair but have you considered going privately? I had health insurance so was lucky and got an appointment within 10 days. Even if you don't if you can afford the first consultation and a blood test your gp can then monitor you until you get your nhs appointment. It would set you back around £200. It is wrong and creating a two tier system but I think that is what is happening. This site is excellent and best if luck. Sx

  • Thanks Lukaduka - I hadn't actually thought about going private,I've got no health insurance and because of the remoteness of where I live I don't think there'll be a practitioner within 300 miles but I'll have a look online to see what I can find. I did read that our "local" rheumatology dept (a mere 130 miles away) are going to do evening and weekend clinics to try and keep up with demand - hope that doesn't finish off the one remaining rheumie! KMx

  • There are national targets for both being seen for the first time and for the time between getting a diagnosis, and starting treatment. Find out from PALS at your local hospital what the targets are, and then phone the rheumatology clinic and ask if they have received your referral from GP and when you are going to be seen. If you aren't going to be seen within the target time, then get PALS to argue for you to be seen at a different hospital or clinic so you can get into the right timeframe. I had a friend who wasn't going to be seen within the time, but GP did the testing required (including anti-CCP and hand xrays) and he ended up being able to have a telemedicine appointment so he could get started on meds quick enough. There will be a way to get seen earlier for your first appointment.

  • i hadn't thought of checking with the hospital whether they had received the referral - my GPs records say that referral has been made but I don't know if these things are done by e-mail these days or still by post (and I never thought to ask). I've certainly got some very helpful pointers from everyone. Thank you. KMx

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