important new research conclusions: long term rem... - LUPUS UK

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important new research conclusions: long term remission & SLE

EOLHPC profile image
EOLHPC
β€’8 Replies

Sobering, but not surprising....am glad to see the issue of "remission" VS "pharmaceutically induced remission" being clarified.

The MEDPAGE link is below

As always, am looking forward to your thoughts

πŸ€πŸ€πŸ€πŸ€ coco

medpagetoday.com/Rheumatolo...

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EOLHPC profile image
EOLHPC
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8 Replies
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whisperit profile image
whisperit

Thanks, Barnclown/coco,

Good quality info like this is really invaluable. Now, can you find some research that says, "You're all going to get better really, really quickly"?

Ta

Mx

EOLHPC profile image
EOLHPCβ€’ in reply towhisperit

πŸ˜†Am working on itπŸ˜‰πŸ€πŸ€πŸ€πŸ€

Penelope-Mary profile image
Penelope-Mary

Thanks for sharing the article Coco...always good to see a published article on lupus....and yes remission is rare...argh this disease.

Imagine being in the study and being in the 'untreated ' cohort 😳.

Now we need a follow up article intitled ' we have found a cure' πŸ˜€

Again Coco πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ

🐚🐚🐚🐚🐚🐚

EOLHPC profile image
EOLHPCβ€’ in reply toPenelope-Mary

ExactlyπŸ‘πŸ‘πŸ‘πŸ‘

thanks to this article I feel as if I better understand why ongoing long term research studies like BILAG are so important and why even patients like me are asked to participate (my version of lupus is considered relatively mild, but interestingly re this article my C3 is always low)

I regularly read articles about researchers hot on the trail of cures... There were several this week...and Lupus UK is active re supporting promising lines of research...I do feel we will "crack" this before too many moons are gone

πŸ€πŸ€πŸ€πŸ€

Penelope-Mary profile image
Penelope-Maryβ€’ in reply toEOLHPC

It would be wonderful Coco, wouldn't it, but turning off any auto immune dysfunctional disease is yet to be... Come on you researchers! Embedded as I am in the world of surgery, there are so many innovative ideas that revolutionise patients lives...in medicine, cogs turn more slowly...pharmaceutics I fear are wrapped in red tape.

🐚🐚🐚🐚

EOLHPC profile image
EOLHPCβ€’ in reply toPenelope-Mary

YES‼️: gosh, SUCH INTERESTING COMMENTS dear PM: that really IS itβ€ΌοΈπŸ˜πŸ˜˜πŸ€

misty14 profile image
misty14

Hi Barnclown

Thanks once again for such an informative article that does explain what a difficult illness lupus is to cope with. It's very sobering that there are such low rates of remission achieved which does prove how better treatments are badly needed. It's bad that belimumab has been the only new treatment in fifty years for it!. I have often wondered what the difference was between clinical and actual remission was so great to have it explained. Something I haven't had like you over the years. Heartening in a way we're not that alone!. Much more is now understood about Lupus which does give heart that a breakthrough will come. Enjoy your last precious hours with your sister. X

EOLHPC profile image
EOLHPCβ€’ in reply tomisty14

Wise & sensible words of experience, dear misty πŸ‘πŸ‘πŸ‘πŸ‘: many thanks 🌻

We're having such a happy, relaxed time...it's so precious...πŸ‘­...we live so far apart

πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€

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