mimacat133 karma2019-10-02 13:36:08 UTC
I'm in Belfast and I've noticed a lot of my lupus friends here are having a panic about what it means for us. We've already noticed that there are certain brands of hydroxy chloroquine we can't get and I know that there's fears over particular prednisone and nifedipine as well.
Have you heard any advice for over here specifically? Or is it time to have a proper discussion with my absolute legend of a wonderful pharmacist who has saved my ass many times?
And seriously, you guys are unsung heroes. Thank you.
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mimacat8 karma2019-07-31 15:25:58 UTC
Have you found anything that supports the link between chronic emotional or work stress with inflammation and autoimmunity? I can tell you there's a link anacedotially and I see it come up over and over again in patient info leaflets, but I haven't seen anything showing the link.
mimacat7 karma2019-10-02 17:28:02 UTC
Wonderful! I'm back on plaquenil in a few weeks and that's great news. I'm also incredibly lucky to be one of the few who seem to be able to tolerate any of plaquenil, HCQ, or qunine, but I know there's a lot of lupus people who can't. I also don't think Lupus UK giving out the list of 'at risk' meds has helped their panic
mimacat6 karma2019-07-31 15:43:31 UTC
Hopefully you guys are getting some great research ideas from this! Seriously, your work is appreciated and you're helping people like me have as normal a life as possible. Thank you
mimacat3 karma2019-10-02 18:26:57 UTC
We're a bit of an oddity over here with this.
Another question: do you think patient advocacy groups publishing the list of 'at risk meds' has helped the panic? I think a lot of the common rheumatology ones had been included on the one Lupus UK put out
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