bDMARDS :(

[Someonesmother]

Called the rheumy nurse today and found out that the company may not grant me compassionate grounds for biologics and I do not qualify otherwise due ti the latest failure on imuran. So back to square one it seems. wrote to the opposition Minister for health to ask why there are no compassionate grounds in the qualifying for bDMARDS, but I guess she can't do anything either, so here i am looking at a future of gradually deteriorating joints and inability to have a normal life any more.

[Hidden]

I just don't understand why they keep changing the goal posts with you in this way - it's very inhumane I feel? I'm going to be starting Imuran soon too once my lungs are clear enough. How long were you on it for and why does latest failure make you less eligible for Biologics rather than more eligible as I would expect?

Love your picture and relate strongly to it although I think you have it much worse than me in the joints department as mine are only moderately affected by RA. Jaw problems are another matter for me just now and could well be RA related but probably don't count with the Biologic criteria and anyway I'd rather try Imuran first. I do hope the shadow/ opposition minister can do something for you but wouldn't it have been more expedient in your case to write to the minister rather than shadow minister? Twitchy x

[Someonesmother in reply to Hidden]

I know, from week to week the story keeps changing. I don;t want to know any more. Just tell me when I have qualified. I can;t be doing this up and down stuff. Because I wasn't on it for three months they won;t count it towards the qualifying for biologics so now that is 4 out of 7 I have failed under three months. 2 to go.

I started on it in Jan and upped the dose late Feb. I did feel a little queasy at times and had not so great bowel stuff but I could handle that.

No pint writing to the gov't they do not care and don't answer your letters. I already tried.

I hope the imuran works for you. My problem is I already had a damaged liver so it was a risk anyway. Hope your chesty thing goes soon you must be feeling wrung out by now.

[Hidden in reply to Someonesmother]

Heck yes I am wrung out with coughing and not being able to eat - it's driving me nuts! The cough has stopped plaguing me at night but then becomes a big problem in the mornings from sitting on me overnight. Awful taste from the Clarithromycin too which isn't endearing me to it much but ive got four days left to go with it.

It just seems so crazy to me that you have to give drugs your body rejects three months? I'm defintely not moving to Australia anyway. Hang in there and hope you finally get the green light on compassionate grounds. X

[Someonesmother in reply to Hidden]

Wow sounds like ti isn;t doing much for you though if you are still not on the road to recovery yet. Hope it kicks in soon.

I don't, I get to about 8-9 weeks and it is all over red rover, why I keep failing the qualifying.

[cathie]

I'm appalled by this. Nras may have advice on alternatives to biologics.

[Someonesmother in reply to cathie]

Not sure they would be available here in Oz. I only have 2 more DMARDS to go and I will have gone through all of them.

[cathie in reply to Someonesmother]

How about the biosimilars? they talk about that in the online survey. I'm so sorry you're having such a struggle. Im puzzled by the sero+/- issue as its never been mentioned to me - though I think I'm +. Is there an Oz equivalent to NRAS/ this site? And is the denial of biologics standard in Oz or just specific to where you are?

[Someonesmother in reply to cathie]

Never heard if those Cathie. I am sero - as the antibodies don't show up in my bloods, but I have all the symptoms. My rheumy said it may take 10 years before it shows up in blood tests so all he can do at the moment is treat me as though I am sero+. There is no site in Oz, I think we all come on here hahahah. I looked at stats and there approx 300,000 diagnosed people with RA in Oz but only about 7,000 on biologics. I guess they make it almost impossible as it costs so much

[cathie in reply to Someonesmother]

arthritisresearchuk.org/art...

This might be interesting. The idea is that these meds are cheaper. What is really wrong is that the pharmaceutical industry makes so much money out of our illnesses.

I dont know too much about the health system in Oz, e except that my physio (brilliant person) is from there and often finds the NHS lacking. I'm glad you can come on the NRAS site! even though the time difference must be tricky.

[Someonesmother in reply to cathie]

I am awake late as I had a lot of sleep today. Very tired after the heart op, might try and not sleep tomorrow couldn't help myself today. haha Well I wonder when they will release them? Probably take 10 years to get through the hoops over here.

[cathie in reply to Someonesmother]

at least its worth knowing what's available. I'm shocked at you not being able to get biologics. Here you have to have checks - X-rays and whether you have infections - including TB. I hope you get a good nights sleep I have no idea what time it is over there - here its midday and we're going out to have our lunch in the car by the side of a nearby loch. Spring seems to have made an appearance.

[Someonesmother in reply to cathie]

It is 11.04 pm here, I have had all those tests recently. well I hope you enjoy your lunch out, sounds lovely. I would need to take a chair I have found i really can't get up from the ground any more whoops!

[cathie in reply to Someonesmother]

we just sit in the car with a sandwich but its nice and outside is bright at the moment. And I dont sit on the ground either!!

[Someonesmother in reply to cathie]

ahh Ok. Sounds lovely. Enjoy your spring day

[allanah in reply to Someonesmother]

I'm sero negstive and get biologicals x

[Hidden]

There was another member of this community who had to try every DMARD and never quite met the criteria for Biologics. This was in the UK so it's not only an Oz issue - a postcode lottery exists in the UK too where biologics are concerned.

[Someonesmother in reply to Hidden]

what is a postcode lottery? If you live in a certain area you get them and if you don;t then too bad so sad?

[Hidden]

Yes - various health authorities (boards in Scotland) interpret the NICE/ SIGN guidelines differently so some people have to fight to get onto them much harder than others. Plus the criteria keep changing so that the DAS 28 score gets increased. Also you could go to one hospital in an area and get a very conservative approach to RA treatment where a neighbouring hospital would take a much more radical aggressive approach as different rheumies have different ways of dealing with RA. I've been doing my research as we are hoping to move next year but I think people with seronegative disease and drug intolerences usually fare much worse in terms of meeting the Biologics criteria over here too.

[Someonesmother in reply to Hidden]

Just sucks as we feel just as much as the + people. It does not lessen the impact in health and ability to try and lead a normal life. I guess that is why they make it so hard, you give up and go away and suffer. I am prepared to take this to the media. It is grossly unjust and in the end costs the govt more as I will have to give up work too, false economy and short sighted savings as far as I am concerned.

[Hidden]

Sorry to hear this Someonesmother. I hope you will have better luck with the next DMARD if that's the plan. Even though as you said, we may not be able to suggest anything for you in Australia, you are welcome to get in touch with us at [e-mail]. Have you tried Arthritis Australia?

Best wishes,

Ruth

[Someonesmother in reply to Hidden]

Thanks Ruth. It is just so frustrating knowing there is something that may make me feel like a whole persona gain and it keeps getting moved further and further away.

[Hidden in reply to Someonesmother]

It's awful. We are doing research on this for the NICE review of biologics here in the UK but sadly you have to live here to take part. I hope our Aussie counterparts can better assist you with the next steps.

[Someonesmother in reply to Hidden]

Hi Ruth

Yes I joined but they are mainly focused on normal arthritis, oldies and juvenile arthritis and all their things are held during the day, useless for me as I work full time. There really isn't anything like NRAS in Oz sadly.

[allanah]

Disgusting. Telephone the chairman of the hospital trust and insist on speaking to them personally . They are often helpful as they can pull strings in their hospital and when a patient is distraught and maybe even telling them they will go to the press, mp they listen. Don't be fobbed off by secretary's though!

[allanah in reply to allanah]

I think this will be the same in Oz, whoever is the chairman of your hospital.

[Someonesmother in reply to allanah]

They are run by gov't here and there is a board that answers to the govt. The nurse is going in to bat for me as much as she can. It is the government that will not budge. She was telling me today a patient came one day early for their blood test and when Govt found out they said it didn't qualify as it was a day early and made them come back to do it again. The people had traveled over 200 km each way. It is an inflexible system that will not budge from their stance.

[Someonesmother in reply to allanah]

I do agree though that this all needs to be made public not just hidden so no one knows