Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Attention Aussie B27 -ves

Hi,

Just a quick one: I live in Manly, Tony Abbott the Federal Minister for Health is the incumbent.

I'm making an appointment with a staffie to see about getting the criteria changed for Remicade.

Anyone want to contribute.....details etc......

Not sure when yet, I just could n't resist it! Must be feeling chipper or just crankie!

David

Hi David,

Whether you're feeling more feisty or energetic doesn't much matter since it's great that you're planning to do this on behalf of B -'s . Good for you - best of luck and hope you see some change in the criteria,
Cat

Hi David
Go get em buddy!!!!! Anything I can do please let me know,would love to help.Even if you get in to see them and just want company for the day,I will be there.
How are you feeling now?????

Shirl

Hi,

I guess it's about hope, and a fair go! If you think about it, it's genetic descrimination.

Bit sore, but the mid neck is coming loose, both sides of the injected facets.

How's you?

David

It sure is descrimination!!!!! So anything I can do to help just yell. Thats like saying women dont get AS,there are plenty of people here to prove them wrong.Sorry just gets me mad...lol....
Yep Im ok,had a run in with Jasons school today,that was fun....lol.....
Well I hope you keep getting better day by day.

Shirl

Hi David

While you're with our esteemed minister - can you really get past the aides? - could you please lobby on behalf of Glucosamine as well (even if I'm B27 +ve!). It angers me that all these poisonous NSAIDs, with their major drug company support, are on the PBS list whilst Glucosamine isn't.

I put my improvement in symptoms - largely symptom free now (except for dry eyes! ) - and reduction in NSAID down mainly to Glucosamine. I realised how effective it was when I ran out of it one day.

Wally

Hi Wally
Well Im finally glad to hear of someone else who takes Glucosamine with great sucess.My GP asked me to try them after I tried MTX,Sulfa..something,Arava,then gold injections,all with no effect whatso ever.So I tried it and was totally amazed when I noticed a difference on the 3rd day.Ive been on them a few months now and most days I would say the pain has been reduced by 70 to 80%.I also wish we had help with the cost of them. My doc thinks they should be too.Just wanted to say Im glad there helping you too!!!!!

Shirl

Hi,

I took SAMe which I'm told is a precursor for the G, that was pretty good......Might give this a shot.

I'm not sure that I'd see Mr Abott anyway, but getting the ear of a staffie might be better.

I had en email yesterday telling me to check out the OBS criteria, so I've replied with the actual points.........I'm not sure that much will come of it, but I'll try pretty hard.

David

Davo,
I'm +ve but if you need any help let me know what I can do. Good luck.
Take care and keep smiling,
Rose

Hi,

Just spoke to a staffie, in Mr Abbotots office. My email has been forwarded to a advisory committee.........regarding B27-ve, ESR/CRP and SI.....I did n;t make much of a fuss before it was officially listed as th epeople I spoke to were concerned it would get delayed and affect those who are really desparate!

I'm not holding my breathe!

Plan B is to access my Superannuation, for the initial doses if I can get back to work then I could pay.

David