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Medicare question for Aussies

lizzy16

lizzy16

Location
Brisbane, Australia
Hi there, hopefully Dusty and my fellow skips can clear a few things up for me!! :ybiggrin:

My new GI told me in December that I will most likely need to apply for Humira once my current dose of steroids ended as it seems Imuran is not enough to keep the symptoms at bay. I couldn't apply then as I was in a Pred-induced remission (my GP put me on the Pred and got me the appointment with the new GI). I took home the questionnaire and was told that I'll need to get over a certain score to qualify for Medicare. His nurse told me to call her if I get really bad and we can take the test on the phone.

I finished the Pred a week ago and my appointment is next Wednesday, I'm having a blood test tomorrow so the results will be in for my appointment. My question is how long after taking the questionnaire does it take for approval/scripts to be written/actually getting the medicine?

I'm wondering if I should call ahead and speak to one of the nurses to get the ball rolling before I go in person? Or should I just wait the week? My symptoms are not urgent yet but they are coming back. It usually takes 2-3 weeks for the steroids to leave my system and my symptoms become quite difficult to deal with.

I guess I'm just worried about the time it'll take to get approved, and in that time I might get really sick again. I'm just starting back at Uni next week, my first time studying in 8 years and I want to be at the top of my game!
 
Catherine

Catherine

Moderator
I think ozboz is on humira.

My daughter is currently doing 50mg course of pred as part of the,qualifing for remicade.

Sorry I can't be more help.
 
Last edited:
R

ron50

Well-known member
My nephrologist and rheumatologist both want me on Humira. The reason I qualify is that I have been down every other track . I have had three kidney biopsies. I have taken 75 mg a day of prednisone for 18mos,sulfasalazine,methotrexate,arava,methotrexate via injections now humira is next on the progression list. If that does not help they are talking cyclophosphormide or cycclosporine. I won't agree to the humira. I am a stage3 colon ca survivor. The last thing I need is immuno-suppressants. Seems like we are dammed if we do and dammed if we don't. Ron.
 
lost kitten

lost kitten

Hey there, your GI has to fill in the rest of the info required (I'm guessing the questionnaire you're referring to is a CDAI form?) and calculate your score then send it off to Medicare in Tasmania for RPBS approval with whatever else they require.
I generally get the scripts back within 2 or 3 weeks from the time my specialist sends them off, although it may take a little longer the first time.
Oh, and this process has to be repeated every 6 months once you're on the maintenance dose. I'm actually waiting on my new script to come any day now.
Good luck :)
 
DustyKat

DustyKat

Super Moderator
We never got to that point Lizzy but I know that Stefan is also on Humira.

Good luck!

Dusty. xxx
 
Samboi

Samboi

Location
Australia
From memory - it took a few weeks.
I wasn't asked to do a formal assessment - however I was very unwell - so I'm sure the GI took care of everything.
Her GI Nurse now takes care of all the paperwork.
When the prescription repeats are finished - a new prescription arrives in the mail.
I did have a phone chat about symptoms with the GI Nurse at about the six month mark - that may have been the six month assessment somebody mentioned.

But overall - my GI and her nurse take care of everything for me.
I'm very spoiled I think - and very lucky.
And everything turns up with plenty of time.
 
Catherine

Catherine

Moderator
Farmerswifey has a son who gi thinks he should start humira. Don't know how far along they are in the process.
 
A

Aussie

Hi Lizzy, it takes around 2 weeks because the script needs to be sent to Tasmania, and then stamped if approved and sent back. You can't do it all over the phone, as part of the CDAI includes an abdominal examination. You can speed it up if you ask the IBD nurse to send the script to Tassie with express post and also send a return express envelope with it.

Best wishes.
 
lizzy16

lizzy16

Location
Brisbane, Australia
Just a little update, I saw my specialist and we have decided to pursue the Humira option - you're right my application will take 2-3 weeks and I'm back on a low dose of steroids to tide me over until that time. The Prednisone is making me feel better already and I'm hopeful about getting results with the Humira - time will tell. I feel like I'm in good hands, my GI and the IBD nurse have been really supportive and informative.

Fingers crossed ey!
 
R

ron50

Well-known member
I got a reprieve from humira. I have just seen both my nephrologist and rheuma tologist. Humira is good for my psoriatic artritis but is not considered useful for inflammatory kidney disease. I had a good discussion with my rheumatologist and we eventually decided I would give methotrexate (injections) another try. I stopped last time because of diahorrea and vertigo. I am hoping questran will continue to control the diahorreah and anti-histamines keep the vertigo at bay. If it does not work my level of protein loss now qualifies me for cyclosporine.
Good luck with the humira Lizzy I hope it works for you,Hugs Ron.
 
farmerswifey

farmerswifey

Hi Lizzy, I hope you are feeling well! I just wanted to let you know that currently my little boy is on 6mp and Allipurinol, and depending on blood test results probably this week, we will see what to do next with him xo If our GI is happy how things are going, we may not have to go up a step in treatment...take care x
 
Gra

Gra

ron50 said:
I got a reprieve from humira. I have just seen both my nephrologist and rheuma tologist. Humira is good for my psoriatic artritis but is not considered useful for inflammatory kidney disease. I had a good discussion with my rheumatologist and we eventually decided I would give methotrexate (injections) another try. I stopped last time because of diahorrea and vertigo. I am hoping questran will continue to control the diahorreah and anti-histamines keep the vertigo at bay. If it does not work my level of protein loss now qualifies me for cyclosporine.
Good luck with the humira Lizzy I hope it works for you,Hugs Ron.
Click to expand...
Ron, you could try accupressure for the vertigo , see http://www.acupressure.com/blog/?p=1076

Try it, accupressure works for me in numerous ways.

Gra

2
 
Outlaw

Outlaw

Out of a matter of interest are you being treated privately with this?

I'm seeing my specialist today (public system) and fairly sure he's going to start pushing harder for me to get moving on Humira as the azathioprine, allopurinol, budesonide cocktail i've been on for about a year now is no longer doing the job effectively.
 
Samboi

Samboi

Location
Australia
I see my GI as a private patient, but the handling of my Humira via the GI nurse is done through a public hospital. Although the public hospital also has a private section - which I use as a private patient.
But I'm pretty sure the Humira stuff is done through the public section.
I'm not sure it makes any difference as the Humira is on the PBS anyway.
 
lizzy16

lizzy16

Location
Brisbane, Australia
I'm seeing my GI as a private patient with a referral through my GP, and Medicare will reimburse some of the consultation costs (about 30%), and yes I think the Humira application is done through the public section as it involves the application to Medicare once you have a certain score on the CDAI form.

I start my loading doses of Humira tomorrow xx
 
Gra

Gra

Hi,

I keep hearing about how beneficial Low Dose Naltrexone (LDN) is for IBD sufferers. Anyone know if it is available in Australia for treatment of IBD?

There is a clinic in Subiaco W.A. run by George O'Neill, where he treats people with Naltrexone to help them get of other drugs. Thinking of approaching him.

Gra
 
Gra

Gra

Gra said:
Hi,

I keep hearing about how beneficial Low Dose Naltrexone (LDN) is for IBD sufferers. Anyone know if it is available in Australia for treatment of IBD?

There is a clinic in Subiaco W.A. run by George O'Neill, where he treats people with Naltrexone to help them get of other drugs. Thinking of approaching him.

Gra
Click to expand...
Update on above. I called George O'Neill's clinic, couldnt get to talk to him, the receptionist told me she had never heard of it being used for that purpose, and wouldnt discuss any fourther. I left a message to ask for the Dr. to call me, but havent heard back..... :(

(PS - sorry for cross posting...)
 
Outlaw

Outlaw

<Vent On> Well I was expecting to start Humira next week. But seems as I reduced my prednisone and started feeling crappy again so went back up. That's not good for the paperwork and Medicare.

So to get it straight. I need to be feeling off and mildly flaring to satisfy medicares requirements for approval. What a load of you know what! Was bad enough they don't count the budesonide I was on for the last 2 years before moving to prednisone a month ago!

Grrrrr!!! Oh well, now I know the red tape behind it can move forward and will have my loading doses in a few weeks. <Vent Off>
 
lizzy16

lizzy16

Location
Brisbane, Australia
Outlaw, that's what happened to me, when I got back to Oz in October I was flaring, and my GP put me on Pred and got me in to see a new GI - when I saw him the Pred was working and he told me to wait and see when the 6 week taper finished, well that was over Xmas and he was on holiday when the Pred wore off and I flared, so my trusty GP put me on another 6 week course, and then when that finished I saw my GI and was flaring enough to do the CDAI paperwork!! It was a bit frustrating to know I wasted almost 4 months by the end of it, I could have been feeling better sooner and not compromised my body on steroids for that time! But my GP was just doing what she could to tide me over.

I hope it works out for you and that when you get your loading doses it'll all be worth it x
 
Gra

Gra

Outlaw said:
Well finally received my approval and had loading doses last friday. Onward and upward i hope.
Click to expand...
Hi Outlaw, I hope it starts working for you soon, it works within a week for some people, but with me it was about 6 - 8 weeks before I noticed a clear difference (so dont despair if you dont get instant relief). Im now coming up to the end of my second script (24 weeks), and my GI has (I trust!) sent off the paperwork for approval to keep going on it.

Gra
 
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