My RA Journey

We returned from a weekend away in September - the following day had a phone call saying the Rheumatologist had a cancellation and would I like it. So off I go not really thinking about what was about to happen. Arrive with a couple of minutes to spare and whisked straight into the Rheumatologists office. Lots of questions and examinations - the squeezing the hands thing (i nearly ended up on the ceiling didn't know my hands hurt that much!). I was asked if I would like to join a study of people who have an early diagnosis of RA - agreed to that and was whisked through to the research department and scans done of my hands and feet showing inflammation in both wrists and in the knuckles on my right hand. Lots of blood tests lots more questions and x rays, Found out the nurse has RA and Sjorgens so was able to have a good chat with her.

Finally left the hospital after 6 hours head reeling with information bottom stinging with the steroid injection and the methotrexate shoved in my handbag along with information leaflets about RA and the treatment of it. When I entered the hospital I thought I couldn't possibly have RA.

Last week my medication was upped to 20mg - my hands aren't quite behaving as they should thinking of adding another damard maybe Sulfa or Hydroxy, but on the whole don't feel to bad. Get tired easily but still working full time and have even ridden my motorbike.

From initial GP blood test to seeing the Rheumatologist who is really very good,approachable and human, a little over 4 weeks all with the NHS. I feel very lucky to have had this care so quickly. I still worry about what the future holds, but for now I am well cared for and doing the things I love to do I can't ask for more than that. Hope I haven't wittered on to long but maybe this will help someone see that life can continue almost as it was before.

Oh also Sjorgens has decided to join the Autoimmune party along with Hashimotos!!

Gentle hugs

Gerry

x

4 Replies

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  • Sorry to hear you've been diagnosed with RA but it sounds like you're getting excellent care. How soon will you be seen for follow up? It's all very different from when I was diagnosed in 2012 and had to pay privately to see a rheumatologist after fighting for 6 months to be seen.

    Hopefully such a good start will give you a great response to treatment. I have sjogrens and hashimotos too. The wonders of autoimmunity eh! It's lovely to hear such a positive post. Best of luck and hope you continue to improve x

  • Thank you for posting - it will give some hope to those people new to RA who read so many posts from us long term sufferers who are struggling to control our disease. Most people only post when they have difficulties, so I know it often comes across as though that is all there is.

    I know I have had long periods when life has been (almost) normal on treatment controlling the auto-immunity.

  • Hi Gerry,

    Thanks for sharing your story. It's a relief to hear you were treated so quickly and have seen the benefits of this. I do hope the hospital gave you some information about NRAS and what we can do to help if you should need us. Our website is nras.org.uk and you can call our helpline team on 0800 298 7650 if you have any questions or worries.

    Best wishes,

    Ruth Grosart

    Digital Media Coordinator & HU Admin

  • What a great positive post Gerry. Particularly helpful for the newly diagnosed who generally only see on here our grumps & moans about delayed initial referral to Rheumatology & the pain & frustration waiting to start effective treatment. My first steps into RD were similarly good, 2 weeks from seeing my GP to an appointment at the diagnostic clinic & started on DMARDs, NSAID, steroids & pain relief although it differs in that I didn't participate in a trial or study & I was diagnosed in a different healthcare system abroad.

    The cynical side of me questions if the assumption you would agree to participate in the study was why you were fast tracked (I hope that doesn't read too negatively, it's not meant to though yours does seem to be an unusual case) as we hear so often that the recommended timescale guidelines aren't in reality what happens. Conversely I really would rather hope that was not the case & this is an example of a turnaround within the NHS of initiating early treatment & things are indeed changing & being recognised as really important for the future for the patient & following recommended guidelines as this excerpt c&p'd from the NICE site states

    "To prevent functional impairment and disability, NICE guidance recommends that first‑line treatment should start as soon as possible, ideally within 3 months of the onset of persistent symptoms[10]. In line with the NICE quality standard and Department of Health best practice tariff, the time between referral from a GP to a specialist service for diagnosis should not be more than 3 weeks and people should start disease‑modifying anti‑rheumatic drug (DMARD) treatment within 6 weeks of referral."

    I really hope you continue to do well Gerry & can remain working full time, even more zooming around on your motorbike!! I look forward to your further posts & really hope that they're equally positive! :)

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