My name is Karen and I live in Richmond, BC
Canada. I was diagnosed last year in October.
Always being an active , busy and healthy person,
waking up one morning and not being able move was really scary. I had no swelling but everything hurt, like after running a marathon. It took a lot of tests, several doctors and a great rhemy to diagnose PSA within 10 months.
I have been successfully taking sulfasalazine, but after a
year now some pain has been creeping back, mainly
my hips, back and neck. I will bring this up at my next appt.
in Dec. Any suggestions on what to ask? I really
hate taking medicine, but I know it makes me feel better. Anyone in a
similar situation on sulfasalazine? Does anyone live near me? Just feeling
a bit down, really was hoping to feel more like myself after
a year of this. Anyway, it’s morning and I don’t feel my best until 11:00 or later!!
Hi Sybil
Thanks so much for your response. I am not near Toronto, actually I am on the opposite coast. No worries,
we have resources here too that are great. That's a great idea to keep a journal. I had been feeling OK so it didn't occur to me
to write stuff down when I'm not feeling great . And the sulfa might just be not strong enough anymore. I will ask
about other options. Thanks for making me feel a bit more positive today, Karen
Hey, I heard my name! LOL. Yes, kmofa, I do attend one of the best PsA research clinics on the planet –
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/psa-clinic-toronto-western-hospital
Unfortunately, I got there far too late. (but that’s a whole other story!) But the distance … YVR to YYZ is almost as far as LHR to YYZ. Would I go that far for a second opinion from them? If I could find a way to swing it, I’d do it in a heartbeat!
Sybil gives great advice about preparing for your next appointment. Have you had a look at our Newbies’ Guide yet? Here’s an article that answers some of your questions:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/getting-the-t-shirt
As for experiences with sulfasalazine go, you could go to the very top of this page, on the right, and in the small search bar, key that word in. Then you can see what discussions there have been. SSZ did nothing for me, but occasionally there’s a person who says it has helped.
Sure, there are some new PsA friends near you: go to the MEMBERS part of the site (green band above), select the Advanced Search option, and search away. But the real beauty of this forum is that even your new friends in Australia and Europe are as close as your keyboard!
I hope that you find this a good place for support and information. Glad you’ve joined us, even if it’s too bad that you’ve got this sneaky disease like the rest of us do.