Belinda's Cosentyx journy

[Grizzly Bear]

Fantastic news Belinda

[Fred]

Congratulations Belinda, long may it continue.

[Caroline]

Very, very good news Belinda!
Keep an eye on your immune system.

[Bill]

I just thought I'd point out that the pin was pulled on Cosentyx in Australia for p and psa as of the first of October for new users. Fortunately that leaves Belinda in the clear. I have done a little research into the conditions under which you can get biologic treatments in Australia, and it only reinforces my view that my self-treatment with DMF is by far the safer and more effective option. All the applications to be submitted by specialists are available online, so I know exactly the criteria required for approval. I must say I am utterly disgusted and appalled by the criteria: A similar approach to oncology would equate to waiting for a patient to reach stage four before offering treatment. That I have done so very well is surreal and completely farcical. I feel no joy at being so well when so many poor buggers are needlessly being drowned in a bucket of shit.

Meanwhile the PBS continues its largess toward Biogen, which last year saw them paid over forty-five million for raw material with a value of a few thousand. What a thoroughly useless and incompetent pack of morally corrupt bastards.

[suthoshire]

I just thought I'd point out that the pin was pulled on Cosentyx in Australia for p and psa as of the first of October for new users. Fortunately that leaves Belinda in the clear. I have done a little research into the conditions under which you can get biologic treatments in Australia, and it only reinforces my view that my self-treatment with DMF is by far the safer and more effective option. All the applications to be submitted by specialists are available online, so I know exactly the criteria required for approval. I must say I am utterly disgusted and appalled by the criteria: A similar approach to oncology would equate to waiting for a patient to reach stage four before offering treatment. That I have done so very well is surreal and completely farcical. I feel no joy at being so well when so many poor buggers are needlessly being drowned in a bucket of shit.

Meanwhile the PBS continues its largess toward Biogen, which last year saw them paid over forty-five million for raw material with a value of a few thousand. What a thoroughly useless and incompetent pack of morally corrupt bastards.

I am not too sure what agenda you are pushing here, but I was prescribed Cosentyx as a first time user last week... and it is still on the PBS Website, so I am confused as to where your (mis?)information comes from ??

I am hoping I get a similar result, well done Belinda ... fingers crossed for me, it has been a long journey!

[jiml]

Hi suthoshire and   to the club. I don't think anyone here has an agenda. We all speak of our experiences.... I'm glad you have been able to get cosentyx and I hope you get similar results to Belinda, we have several members of the club on cosentyx and it certainly seems to outperform other biological drugs. Do feel free to start a thread of your own about your experience as it will act as a reference for yourself and will help others who are looking for treatments

Thanks for joining and if you wish to be informed of the latest news and experiences of others sign up for the free monthly Groups

[Bill]

Yes, you are correct, but I have no desire for a prescription for secukinumab as this would entail getting covered with psoriasis and riddled with arthritis, then spending at least six months on useless medications, perhaps with a near death experience thrown in. Currently I am four years into systemic self-medication with excellent results. My medication is unsubsidised and costs me less than $20 a year. I wish you well and hope you get an excellent result, and please share your experience, but I doubt that you will do as well I have done with your ~$20k pa publicly subsidised treatment.

My agenda, if you like, is to see people treated in a timely manner and not left to rot. Even if you do have out of control p and/or psa for at least six months (Do you think this satisfactory?), you face the prospect of five years in limbo if three biologics fail you, or perhaps you have a different interpretation of this passage from the PBS website?

<In a single cycle, patients can receive long term treatment with a biological agent if they continue to respond to treatment.

Once a patient has failed or stops responding to treatment 3 times, they have formally completed a single cycle. They must have a minimum 5 year break in PBS subsidised biological therapy before they can start the next cycle.

In the same cycle, patients cannot fail or stop responding to the same PBS subsidised biological agent more than once.>

Against this, I went on my treatment with a wait of a few days for my drug to be shipped. I have done much better self-treating than I could ever have done through the health system. That disgusts me both from the inference to competency and its implications for Australians with severe p and psa. Mostly I am annoyed that it took me so long to understand, but in fairness understanding does take time.

Cheers,

Bill

[Bill]

Here is a copy of the prescribing restrictions from the pbs for psa. How does this fit with you? I will be contacting the PBS for clarification:

<

Severe active psoriatic arthritis

Treatment Phase: Initial 3 - grandfather treatment

Clinical criteria:

   Patient must have a documented history of severe active psoriatic arthritis,

AND

   Patient must have received non-PBS treatment with this drug for this condition prior to 1 October 2016,

AND

   Patient must be receiving treatment with this drug for this condition at the time of application,

AND

   Patient must have failed to achieve an adequate response to methotrexate at a dose of at least 20 mg weekly for a minimum period of 3 months,

AND

   Patient must have failed to achieve an adequate response to sulfasalazine at a dose of at least 2 g per day for a minimum period of 3 months; OR

   Patient must have failed to achieve an adequate response to leflunomide at a dose of up to 20 mg daily for a minimum period of 3 months,

AND

   Patient must have demonstrated an adequate response to treatment with this drug,

AND

   Patient must not receive more than 24 weeks of treatment under this restriction.

Population criteria:

   Patient must be aged 18 years or older.

Treatment criteria:

   Must be treated by a rheumatologist; OR

   Must be treated by a clinical immunologist with expertise in the management of psoriatic arthritis.

An adequate response to treatment is defined as:

an erythrocyte sedimentation rate (ESR) no greater than 25 mm per hour or a C-reactive protein (CRP) level no greater than 15 mg per L or either marker reduced by at least 20% from baseline; and

either of the following:

(a) a reduction in the total active (swollen and tender) joint count by at least 50% from baseline, where baseline is at least 20 active joints; or

(b) a reduction in the number of the following major active joints, from at least 4, by at least 50%:

(i) elbow, wrist, knee and/or ankle (assessed as swollen and tender); and/or

(ii) shoulder and/or hip (assessed as pain in passive movement and restriction of passive movement, where pain and limitation of movement are due to active disease and not irreversible damage such as joint destruction or bony overgrowth).

The same indices of disease severity used to establish baseline at the commencement of treatment with each initial treatment application must be provided for all subsequent continuing treatment applications.

The assessment of the patient's response to this PBS-subsidised course of therapy must be made within the 4 weeks prior to completion of the course of treatment. It is recommended that an application is submitted to the Department of Human Services no less than 2 weeks prior to the date the next dose is due in order to ensure continuity of treatment for those patients who meet the continuation criteria.

Where an assessment is not submitted to the Department of Human Services within these timeframes, patients will be deemed to have failed to response, or to have failed to sustain a response to treatment with this drug.

Patients may qualify for PBS-subsidised treatment under this restriction once only. Further applications for treatment with this drug will be assessed under the continuing treatment restriction.

The authority application must be made in writing and must include:

(1) a completed authority prescription form; and

(2) a completed Psoriatic Arthritis PBS Authority Application - Supporting Information Form; and

(3) a signed patient acknowledgement; and

(4) the date of commencement of this drug; and

(5) results of the baseline patient assessment prior to commencing treatment with this drug.
Note

Any queries concerning the arrangements to prescribe may be directed to the Department of Human Services on 1800 700 270 (hours of operation 8 a.m. to 5 p.m. EST Monday to Friday).

Prescribing information (including Authority Application forms and other relevant documentation as applicable) is available on the Department of Human Services website at NO LINKS ALLOWED

Applications for authority to prescribe should be forwarded to:

Department of Human Services

Complex Drugs

Reply Paid 9826

HOBART TAS 7001 >

[Grizzly Bear]

G'day Bill,

Interesting reading mate, thank you

Do you folks down under have an nus like ours up here or do you have like the Canadian and American's, a medical insurance of sorts ?

Cheers Bill

andy

[Fred]

I don't think anyone here has an agenda.

Nope. If they did they wouldn't be here.

Bill is a long standing and very valuable member of Psoriasis Club.  

Suthoshire I can understand your post. You have recently been prescribed Cosentyx so it is understandable to question what Bill has said, but I can assure you that Bill has no agenda. He is not that type of person.

I'm pleased to hear you have been prescribed Cosentyx it is a good treatment and a lot of our members are giving good feedback on it's use. I have recently started it myself after 6+ years of Stelara ad so far I have to say it beats Stelara hands down. So hopefully you too will see good results.  

Like Jim said, don't hesitate to start a thread in Prescribed Treatments For Psoriasis about your journey. It's a good way of keeping track of things and your input could help others.  

I think we should all remember that this is Belinda's thread and try not to take it to far off topic. So I would suggest that Suthoshire or Bill you are welcome to start a new thread about Pharmaceutical Benefits Scheme (PBS) (I had to Google that) in Psoriasis And Psoriatic Arthritis Topics if either of you wish as it could be of interest to others living in Australia. I know Belinda lives in Australia, but sometimes threads can start to drift and get a bit muddled up.

@Suthoshire welcome to Psoriasis Club by the way.