Newly diagnosed seronegative 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.
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