Hi All,

After having a flare for quite a few weeks in a row I finally got into see my rheumy and finally questioned him about why he hasn't put me On any TNF blockers yet, after all I read it feels like I'm the only one thats not taking humira etc. his response was "there are to many risks associated with these sort of medications including alot of infections and because it is meant to lower ur immune system to slow the progress Of the disease it will leave me more susceptible to catching everything around such as flus, colds etc but because my immune system will be lowered it would hit me worse. Is this true?? Do the pros of using theses drugs out weigh the cons? Also I don't know if this is an Australian thing but are there certain grades of AS that u have to be in to be covered by health care in ur countries?? Apparently I won't be eligible until my sacro joints are deteriorated enough to fall under a grade 2 or above and have high immflamation levels in my blood work. As of my X-rays done a year ago my grades were 1/2 so i have to get more X-rays next week and my blood work has come back with high immflamation levels. In the mean time I'm on NAIDS which are in suppository form as everything that goes in my mouth gives me ulcars :-( so far so good but the pain levels are still the same :-( are our Doctors in australia stuck in the old ages?? Or just take alot of precautions? DOes anyone know there Grades of Deteriation when put on TNFs??

Hope all that made sense
Thanx in advance :-)

Hi BooBoo,

In Australia the Bilogic drugs (Anti-TNF) cost about $25,000 per year for a single patient. Medicare therefore in collaboration with the doctors has set a rigid set of criteria that you have to pass in order to be eligible.

The other option is to pay yourself!

The advantage in Australia is the doctor can see - not my problem - you don't satisfy the criteria.

In other countries like the USA the doctor is liable to feel he is not doing everything he can for the patient unless he prescibes the anti-TNF's. The proviso of course is the patient usually has to employed and be covered by their company's insurance.

Meanwhile, the USA continues to go down the toilet financially.

Ultimeately no countries can afford drugs that retail at $25,000 per year

Thanx for the reply David, now why couldn't the rheumy just explain it that way hehe. He did say though if my sacro joints havnt deteriated to a Grade 2 in the next X-ray then I wouldn't be eligible and if I still wanted the injections it would cost roughly $20000 a year I think at that time my jaw hit the floor. And if I was elible Medicare would cover it and I would only have to pay roughly $30 a month. Any ideas on what we could try next if these anti immflamatories don't work?? Cos if I end up not been eligible and the NAIDS don't work then I don't have anywhere to go to from there. I asked about the non starch diet and he was against it saying its a waste of time and I would be doing more harm then good.

Hi there.
I too am in Australia (QLD) and have just started TNF's 4 weeks ago. The approval criterior is a pain in the butt to say the least. I did not fit some of the criterior for approval but my rheumy worked his magic to get arround this.

If you want details of how he did this feel free to PM me.
So far the only side effects I have had are that I get quite tired the day I have the injection. I'm on Enbrel that I inject once a week. I did get a headache the first 2 times but not with the last 2.
I also have 3 children and do have to be very careful if any of them get sick. There are horror stories of using TNF's but the chances of severe problems are 1 in 10 000 to 1 in 100,000. So not very high odds.

I must say even though I have only had 4 injections I have already seen inprovements in pain levels.

All the best and don't forget to contact me if you would like more advice on how to get arround the criterior.

Hey All,

I'm an Aussie as well and the system is very rigid and stupid. Disability, particularly if you have children costs a hell of a lot more than $25 000 a year ( I heard closer to $20 000). I think you get about $30 000 a year plus rental assistance and other bits and pieces. But then again governments can act like morons sometimes.

If you do a search you can find the criteria at the medicare website.

Just to add insult to injury the makers of Enbrel won a court case that extends the patent of Enbrel another 12 years. That means no generics and cheaper - I don't mind corporations making a healthy profit where entering plain guilty territory here.

Let's hope they cure the [*bleep*] so they don't have to deal with it anymore.

Aussie girl where abouts in QLD are you? I'm in Brisbane.

R

<sigh> What the average doctor knows about the link between nutrition and disease seems as if it could be written on the back of a postage stamp!

Here's the thing: what YOU put into your mouth / body is not in any way controlled by your doctor - that's why a significant part of the taxes that I earn by working hard goes to paying for medications for those with PREVENTABLE DISEASES such as coronary artery disease, high blood pressure, heart attack, stroke, lung cancer, kidney disease, Type II diabetes... or in so many cases - ALL OF THE ABOVE !

It's amazing that you are FREE to be a chain-smoking overweight and poorly nourished Aussie and get the government to subsidise your medications to treat these essentially SELF INFLICTED disease states through MY taxes when those like Trish, David, You and I are essentially denied medications that should we wish to take them can help to control a disease that we DID NOT choose - and let's face it - who would??? - to inflict upon ourselves!

Australia's health care system is very much that of the nanny state - there is no incentive for folks to take care of themselves because they are not SELF FUNDING their own health care, the way they do in the US. I acknowledge that this system is fraught with problems for those who have inherited / developed diseases that they could not otherwise have avoided knowingly and therefore may find themselves UNABLE to work but you've gotta LOVE the irony of it:

I work hard - well, really struggle most days - so that I can afford to pay for the unsubsidised medications that I need to keep me in a state where I CAN work because I do not have a Health Care card... If I didn't take medications, I would be unable to work and would therefore qualify for a Health Care card and would get those same medications for $2:80 each!!!

Oops - this seems to have turned into a RANT..... but what I really wanted to say is that only YOU can decide how to help yourself....If YOU decide to try changing your diet, then you don't have to disclose this information to your doctor - who isn't able to offer appropriate pharmacological help even if that is what you wanted!

MAKE THE DECISION TO TRY A FEW MONTHS OF DIETARY CHANGES - it won't hurt and it might just help....seems a lot harder for some than others, but as I said - nothing to lose, EVERYTHING to gain!

You need to have ownership of your own healthcare - if you choose to involve a traditional medical practitioner, then that is YOU making an informed decision.

Cheers,

Hi, I'm not in Australia, but I am on biologics. Here's the thing, your doctor is quite right to tell you that there are great risks with these medications. Aside from infection risk (I'm in the middle of an infected cut right now and haven't taken my Enbrel in two weeks as a result) there are others, such as biologic induced MS. You do need to know the risks of any medication (sadly, as you know, NSAIDS also have their risks). However, you need to understand the actual statistics of those risks. When I started on biologics, my reading told me that my chances of being hit by a bus as I crossed the street were greater than my chances of acquiring some biologic induced horrible disease. As far as I'm concerned, your doctor should have helped you gain some perspective on that. I've been on biologics for going on 7 years now and while I've had to go off occasionally to deal with infections (I have had an increase of those, definitely) nothing else untoward has happened to me. Other patients have had other experiences. Should you meet the Australian criteria, you will have to make your own decision, and it should be based on real world stats and what's right for you, nothing else.

As for diet. It can't hurt. It astounds me that doctors can see the link between obviously food related diseases (type III diabetes, for instance) and deny that what we eat has any bearing on our overall health. Personally, I eat a restricted starch diet (gluten free and I try to keep potatoes to a minimum - which doesn't always happen) and feel much better when I stick to it.

Exercise is also key to feeling better, by the way. Keep yourself moving, just don't push it with an area that is in frank pain. Listen to your body.

As for the point that was made about how if Ozzies had to pay for their own healthcare they would be healthier. Whomever made this point used the US system as the harbinger of joy in this regard. No offense intended to anyone reading this, or to my friends in the States, but that is utter tripe. If paying for your own healthcare were so great at forcing people to live healthier lives, the US wouldn't be so high on the list of countries with an obesity problem. They wouldn't be feeding high blood pressure and type II diabetes meds to children the age of 6. I'm not slamming the US system, or claiming that any one country's way is better (although, how making someone sell their house to pay for giving birth or having an emergency appendectomy is at all good, I don't know), I'm just saying that every system has it's problems. For those of us living in countries with subsidised healthcare, perhaps we might remember some of those problems we love complaining about the next time we whinge about paying taxes. How does any of us think the money to pay for things like health care is raised? But that's another debate and I'm not trying to start anything. Just a pet peeve of mine.

Good luck with your rheumy. Hopefully, you will be able to get some clarity for yourself and help him see reason.

Hugs,

Thanx all

I have made a decision to change my diet, I will eat more fruit and vege and have also researched what vegies help with imflammation, I don't think I could completely cut out all starch as my husband is Asian so we eat alot of rice and curries, and I was brought up on alot Of pasta dishes, if I gave rice and pasta up I would lose way tO much weight. As it is I'm on 49kilos sO I can't afford to lose much more. I will start to try cutting out my best friend chocolate (the only thing that makes me feel good when I'm down hehe) I wont tell my rheumy as it seems pointless to tell him stuff that he has no interest in listening too.

The Australian medical system seems to not be focused on the people who truly need these medications to be able to live a semi normal life. It's to focused on helping the people who's illnesses are self inflicted. Argh! Makes me so angry.

I think it may be wise if I seek out a new rheumy maybe one that's younger and where I'm not their youngest patient. Hehe.

Hi Kat

I think I'm actually educating my Rheumy on this disease :-/ my visits are so basic I walk in he asked how I am I say I'm still in pain and NAIDS arnt working so had to stop them, he writes it down, then writes another script for more NAIDS and then I'm on my way, is anyone else's appointments like that?? Im only in there for 5mins which it's meant to be a 20min appointment and he doesn't examine me or anything. I'm learning so much more from the net I tell ya I only see him for pain relief and he can't even seem to help me with that these days.

I understand exactly what u mean about the medical system. Don't get me wrong we are very lucky to get subsidized meds when we have a concession card, I'm lucky I hold One because Of my children :-) unlike alot of countries arnt fortunate enough to have this and end up homeless or selling everything to be able to afford to pay for pain relief. I get it :-)

As fOr the biologics I understand there is always a risk for every single medication out there but it would have been nice for the rhuemy to give me info instead of me always walking out thinking what have I learnt today? Nothing so I go and research it for myself on the web. Thank god for groups like this one or I don't know where I would be :-)

Excercise I do as much as I can without exerting myself and been bed ridden for days later. I'm considering taking up Pilates and hydrotherapy :-)

Regards
Sarah

Hi BooBoo,

I would really encourage you to try a strict NSD, even if only for a few weeks.
Get hubby to cook for himself for a while - or just have a separate meal for youself.
Don't focus on fruit and veg so much - focus more on protein and fat - bacon and eggs for breakfast, chicken fish and lesser red meats for other meals. Only small intake lettuce and other greens.
See how your body reacts.

Try it - maybe you won't need biologics.