Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Life wasn't meant to be easy!

Hi Everyone,
Sorry I haven't posted for a while, had the dreaded fatigue for the last few weeks, 12 hours sleep a night doesn't do a thing (probably cause I wake up every .5 hour!!).
Anyway I thought I'd update you all on the injustices of the Australian health system. I am unable to get any of the TNF drugs (only remicade has been approved for AS and I only have grade 2 sacro illitis which isn't bad enough apparently) but I need to get off prednisalone, and without something else I'll end up in hospital again. However my bone density has depleted to 70% of some one my age due to the fact that I have been on prednisalone for 2.5 years, I can't get anything stronger than caltrate to help my bones cause I'm so young. My doctors have decided to re apply for remicade with recent bone density scans included. I'm hoping that finally I'll have some luck.
Failing that I have a number of doctors that will put me on any trial that comes up for TNF drugs.
On a brighter note "MERRY CHRISTMAS" to all. Hope every one has a safe and ejoyable christmas.
Take care and keep smiling,
Rose

Hi Rose, Sorry to hear about your delima. I have had similar problems in the past in try to receive the proper kind of meds. Tried for years with my HMO with no success. Then my wife got a different medical coverage through her employer and I got the opportunity to see a pain specialist who was also a anisthesologist, (excuse the spelling), and he started me on the meds that I really should have had years ago. Later my wife lost her job and coverage as well. When I went back to my HMO doc, they had no choice but to administer the meds I had been receiving or really didn't seem to mind giving them to me. So If you can see a specialists, maybe they could steer you in the right direction. Hope this has helped and merry Christmas to you too. Good luck. Painman. <><

Rose,

hiya I'm in a similar state with remicade B27-ve. If I was off the preddy and the MTX and stiff as a board I still do n;t qulaify. The rheummy dept said I was a good candidate otherwise.

So I share your frustration.

Is this all happeing with the AS clinic you went to the bone thinning and no drugs etc?

David

Painman,
Sorry to hear of all the trouble you have been through - glad that you have every thing sorted now though.
Currently I see a number of specalists, however in Australia all drugs are controlled by the government (if you want subsidy). They put down criteria that you have to meet - sometimes this can be rather strict. Hopefully my re application will be allowed.
Take care and keep smiling,
Rose

Davo,
My original rehumy was the one to send me for the bone scans, she has been treating me for the last 12 months with caltrate, she sent me to an endocrinologist who will write a letter stating I must get off the prednisalone making the government leagally involved. The re application for Remicade will be done through the AS clinic with the letter from the endocrinologist. I currently take all other meds avaliable (arava, mtx, plaquenil, pred, mobic), I'm on the highest doeses I can tolerate (can't take salazpyrone) and my disease is still very active. The prednisalone keeps me mobile - so stopping that will mean I have to quit my job. In the long run it is cheaper for the government to provide me with Remicade than have to support me financially.
Did you want to get in touch with the AS clinic? Have you had x-rays of you SI's? Do you know what grade they showed? If I hear of any other trials I will let you know.
Hope you have a pain free christmas, this humid weather is making my jaw play up making it really hard to eat. Hope it is over it by christmas!!
Take care,
Rose

Rose,

my hips were supposed to have been checked last visit to the rheummies bu the neck got priority.

rheummy apologised for not being able to prescribe remeicade but B27 -ve she mentione dhte criteria were screwed etc. I do n;t know how long I'm going to be able to take preddy my shins are thin now, so that's mean more tests, and I hate to thoink of what life will be like without preddy......it's just keeping the neck bareable now with all the tramadol and neurotonin and living a very quiet life.

There was talk of using cyclosporin on the bowel and the arthritis but I'm still hearing about it and apparently that is only good for a year.

I know how much I payed in tax, certainly worth me going back to work......apparently they ve bubgeted only for about 4-5000 to be on it in total, so you better get in there quick!!! Adriaan had some good ideas on how to get through the esr/crp issues!

good luck....

David