Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I'm impressed!

Sooo Kevin, then Humira *did* work for you after all...?

(just perhaps not in the way that everyone was expecting, but if it got you here..... )

Hey Tink, yes I agree about the attitude here!

More good news though is that I have it on very good authority that the NASS site is being redone this year. Hopefully, that means that no-one else in future will have same reaction as you had 10 years ago...

That's really exciting re KA being discussed in rheumatology circles too! And a mental note to myself to make sure I mention it to my rheumy next time I see him...

Spotting these two nuggets amongst what can otherwise always be depressing reading re meds made me feel a lot better about starting on Humira too!!

No, the bit I posted is pretty much all there is on that. BUT - it's there, which to be honest is more than I'd expected from pharma! The way I see it, with those two gems, people that want to find out more can very very easily do so now that they know 'what' to look for and 'where' to look.

Oh yeah, and in the interests of full disclaimers, I've been on LSD/occasional NSD for a good year now which has made a big difference to my joints. Unfortuantely, it's not helped my eyes and I'm going down the Humira route now to hopefully prevent permanent vision damage (and delay a cataract op until I'm in my forties, rather than continue heading towards one in my thirties after 5+ years of iritis...) BUT, I intend to continue with LSD whilst I'm on Humira and hopefully eventually get to a point where no meds are needed either for my joints/eyes...

Accident?? Google is no accident, Wendy!

(and yes, google's how I ended up here too)

Thanks for all your responses, I'm thrilled that you're all as excited by this as I was!

The next couple of days will be quite busy, and I'll be running late for work if I don't get moving, so no time to respond to everyone individually... but I really do appreciate each of your comments and also the good wishes for the start of my Humira journey!!

-Anke

I totally agree!

This is totally AMAZING progress!

Mentioning ANY HINT of following a diet with reduced starch on the literature with meds is MONUMENTAL!!!

And to link it with this website is INGENIOIUS!

Think of all the peole that will find this site with all that free advertising and then they can find out about the diet for themselves - when you come on this site - the first thing you do it read, read, read and ask questions!!!

This could have a snowballing effect.... you just wait!!

Holy cow! That IS really impressive!! I'm so excited that the word is getting out and people are being directed to KickAS. That's just fantastic news!

Good luck with humira too!

Well, in my opinion that's taking an incredibly pessimistic view of this news. I mean, honestly, I am completely baffled by your reaction. You have spent the better part of the last month championing the NSD throughout every nook and cranny of KA--sometimes politely, sometimes not so politely. Yet when we get this news that one of the big pharmacy companies has finally given legitimacy to the effects of limiting starch intake, a bit of advocacy that, for the first time, gives AS patients something very concrete to take to their rheumatologists to show them that the diet is more than rumor and conjecture, and what is your reaction? In a nutshell, it was: "Eh, big deal, they only mention LSD. I knew they wouldn't mention NSD and hurt their profits."

Here's the deal: Not only is it huge to have one of the biologic pharma companies providing legitimacy to the diet, but it is almost 100 percent certain that anyone who does a search on the LSD is going to get a big ol' dose of information about the NSD as well. See, they kind of go hand-in-hand, so learning more about the one literally makes it a certainty they will learn about the other. Or nearly a certainty, I guess I have to say, since I can't know about 100 percent certainty in such instances. Throw in the fact that the LSD is also listed right there in practically the same sentence as KA, and I think it is equally safe to say that many of the folks who do investigate the LSD are going to do so right here at KA. And I think even you can acknowledge that if they end up here at KA to learn about the LSD, they are going to learn even more about the NSD, no?

So, maybe this is one situation where it would be best to look at this glass as being half-full instead of kvetching that it never had any liquid in it in the first place. This is a significant piece of news, and more importantly, one that should make all KA members quite happy. I refuse to get bogged down because they chose to mention LSD instead of NSD--talk about splitting hairs.

Brad

I agree it is exciting!