New(ish?) here, with RA and APS
Hello! I signed up to this some time ago so I can't remember if I've already introduced myself (I don't think I did!) so here we go...
My name is Sarah and I was diagnosed with RA in October 2018 just a week before my 31st birthday. I've had a really rough time trying to find medication which will keep it under control, and ended up on Cimzia injections just over a year ago (on Christmas eve - happy Xmas to me?!). I was then diagnosed with APS in June 2021.
I finally remembered to log on here and start posting because my RA is really playing up today - it's particularly bad in my left hand and wrist, although it's started in a couple of other joints too. My RA so far hasn't been bilateral, like my left hand/wrist but the right is fine, which I think meant it took a while for it to be picked up as RA.
Hoping to just be able to have a chat to people who get the daily ups and downs of chronic illness! And particularly now as we start to try and get back to 'normal' with respect to Covid, when everyone else is just so happy to go about daily life without worrying, it's difficult to get others to understand why we are still so cautious.
My husband and I are also about to start our adoption application, so anyone who has adopted with RA or similar it would be great to hear from. Slightly worried it'll stop us from being accepted.
Anyway, hope you're having a good day - looking forward to getting to know you :)
Comments
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Hi @sarahtwigs and welcome to the online community,
You we’re diagnosed with RA in 2018 and APS in 2021 and you’ve had a rough time finding a medication that works for you. You’re currently on Cimzia injections but you’re having a rough day today.
You’ve come to the right place if you want to have a chat about the ups and downs of a chronic illness - everyone on here has experience of living with arthritis and are a very chatty bunch so I’m sure you’ll be made welcome!
You could have a browse through the young people’s forum ( link below) and see if there are any conversations you’d like to join in:
Versus Arthritis has a page on managing your symptoms that you also might find useful to have a look at - it might give you some ideas that you haven’t yet thought of:
Good luck with your adoption application - it would be great if there are any members who have experience of the process could share their story with you.
Best wishes, and do let us know how you’re getting on,
Anna ( Mod)
Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm
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@sarahtwigs Welcome and congrats on managing it so well that it hasn’t spread. I have only been diagnosed since mid october, and it spread blusteringly fast. Beginning of Oct, only slight feet ache, mid Oct right index excruciating, by end oct when I started Dmard (HCQ) all joints some involvement, Beginning Dec MTX added in incremental doses, and its barely touching it at 17.5mg/week (but it is working as I was 2 days late due to an ulcer needing time to heal, and it came on with a vengence!).
So I totally understand that while others are returning to normal, we can’t. Not only is our immune sys suppressed but its also lost direction in that it can be attacking your joints seeing it as a bigger threat while ignoring real infections.
The only solace we have is knowing we are not alone. You are not alone and the whole community here is wishing you well and a long remission
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