Newly diagnosed seronegative arthritis

Mark_E
Mark_E Member Posts: 7
edited 28. Nov 2023, 14:10 in Living with arthritis

Hi all, sorry for the essay I just started and it kept flowing out.

I've been lurking for a few days reading and searching posts which has mostly been helpful and figured it's time to say hello.

I'm 40 and in mid Nov I got pain in toe and thought nothing of it then after a short walk with family it ballooned so headed to gp who initially treated as suspected gout but it didn't clear and started spreading so was eventually referred to rheumatology and got diagnosis in January.

Rapid onset and diagnosis led to talk of possible remission with minimal damage and being managed which despite it having spread and swelling being sufficient (CRP over 100 for max dose methotrexate left me feeling relatively positive about future outlook.

Now three months on its continued to spread, I've had to stop working due to lack of movement in fingers and general fatigue and have lost a significant amount weight with no sign of mxt or sulphasalazine having an impact with CRP levels still well above 100. As with some others it seems I'm a unique case that is confusing the rheumatology team a little, I've had scans and tests looking for all sorts of possible underlying issues but so far nothing identified so it's still just original diagnosis.

I've recently had had 2 steroid infusions and baring a slight improvement waking up day after the effect was very short lived with no obvious changes since (interested to know other peoples experiences) and just had first tocilizumab infusion which I'm hoping will have an impact.

Quickly learnt that nothing happens quickly in this game and that it's a very complex disease with everyone being different but finding it incredibly frustrating and while I'm trying to remain positive it does take its toll and I've had days where I cried at littlest thing. I've got a young family with two boisterous boys and I know I shouldn't but can't help feel guilty about not being able to support as I'd like and being so reliant on partner as I struggle walking even with crutches and movement in fingers severely limited but also sad that I'm missing out on things while they're growing up.

I know things should get better once right meds are found and I need to be patient but also can't help worry what state I'll be in by then with it still spreading and what the long term holds having read some of the literature etc.

Mark

Comments

  • noddingtonpete
    noddingtonpete Moderator Posts: 950

    Hello @Mark_E and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

    I understand that you have seronegative arthritis but at the moment your consultants are still trying to work out how to help you. I do hope it happens soon. Have a look through the following story which might help.

    You are not alone now and among friends who will help and support you as much as they can. I am sure others will have gone through similar experiences and will connect with you to share their support. Please keep posting and let us know how you are getting on.

    Best wishes,

    Peter

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • jamieA
    jamieA Member Posts: 660

    Hi @Mark_E

    I know we are all different and how we react to drugs will vary but I thought I'd reply anyway.

    We're significantly different in age - I was 65 when diagnosed with psoriatic arthritis in October 2020 - but you're experience certainly chimes with mine. In my case it was my left knee that started it all and it spread really quickly to hands, shoulders and feet. I was initially prescribed sulfasalazine, then MTX and in July 2021 they added Amgevita - an adalimumab biosimilar. By July 21 I was on crutches but within 3 weeks of starting the biologic I could feel a difference and 2 months in I was able to hand back my crutches. I'm now able to walk my dog 50-60kms a week again - albeit with a limp. I'm not cured by any stretch but I'm functional and just try to realise my limitations and work within them.

    If you haven't already been pointed in the direction of extra help I'd ask for referrals to a pain clinic, occupational therapist, rheumatology physio and rheumatology podiatrist if you can get it. I've been referred to all of these and they helped significantly - particularly rheumatology physio as keeping joints moving is a great help. I've had two 12 week NHSanywhere physio courses in the last two years which have been really beneficial. I also enrolled in the free Nuffield Health Joint Pain programme which was also very good.

    I saw a rheumatology consultant in February and she said that my rapid progress - in their eyes - to a biologic that worked for me has helped minimise joint damage. Apart from my knee - which will need replaced at some point - all the other affected joints haven't deteriorated to the point of concern.

    I hope you get stabilised soon.

  • Mark_E
    Mark_E Member Posts: 7

    Hi Jamie

    Thank you for your response it certainly helps give hope that I can get walking and out and about with the family again.

    I've seen occupational health and they have given me gloves and aids to try some have helped others less so but it's a work in progress.

    I've also seen physio who provided me the crutches, some advice and exercises to do to try to keep muscle but said in current state there was little more he could do. I've got an open appointment for when things hopefully start to improve where more can be done to build back up etc.

    Pain wise so far I've been relatively lucky that despite all the inflammation it's not been chronic as with some although it does seem to be progressing so who knows what the future holds and I'll certainly consider asking for referral in future.

    Podiatry is something that has really been discussed yet so thanks for that suggestion I'll definitely look at that and see what's possible.