Jims journey on Skilarence

[jiml]

It's not used in France either.

It is available.

But some group of Management idiots who call themselves experts (PHMR) have advise to not reimburse it. Well then nobody is going to use it.

Again... Kat....   No Knowledge. 

All I know is my dermatologist pointed me to this:

Translated by Google:

Quote:

---

Insufficient clinical interest to justify reimbursement for plaque psoriasis due to its low efficacy and an unfavourable tolerance profile

SKILARENCE has Marketing Authorization in the treatment of moderate to severe plaque psoriasis which requires systemic therapy only in adults.

It has demonstrated low efficacy vis-à-vis the placebo, but there is no data to locate its place in the therapeutic strategy compared to other systemic, biological and non-biological.
   
Its tolerance profile involves many risks, in particular gastrointestinal disorders, flushing and hematological disorders, some of which are potentially serious such as hepatic, renal, hematological disorders, cancer and risks of serious infections including PML.

The medical service provided by SKILARENCE 30 mg and 120 mg, gastro-resistant tablets, is insufficient in the indication of the Marketing Authorization, in view of the therapies available, to justify treatment by national solidarity.

Yes I know you will pick that to pieces, but as I mentioned it's not available in France and you saying it is I thought I should clarify.

But I'll stop there as this is Jim's thread and I only follow it as I'm interested in his progress. 

thanks for the input Fred on why the French declined the Skilarence. And yet they still keep prescribing Methotrexate which is much more toxic than skilarence.

[Caroline]

It's not used in France either.

It is available.

But some group of Management idiots who call themselves experts (PHMR) have advise to not reimburse it. Well then nobody is going to use it.

Again... Kat....   No Knowledge. 

All I know is my dermatologist pointed me to this:

Translated by Google:

Quote:

---

Insufficient clinical interest to justify reimbursement for plaque psoriasis due to its low efficacy and an unfavourable tolerance profile

SKILARENCE has Marketing Authorization in the treatment of moderate to severe plaque psoriasis which requires systemic therapy only in adults.

It has demonstrated low efficacy vis-à-vis the placebo, but there is no data to locate its place in the therapeutic strategy compared to other systemic, biological and non-biological.
   
Its tolerance profile involves many risks, in particular gastrointestinal disorders, flushing and hematological disorders, some of which are potentially serious such as hepatic, renal, hematological disorders, cancer and risks of serious infections including PML.

The medical service provided by SKILARENCE 30 mg and 120 mg, gastro-resistant tablets, is insufficient in the indication of the Marketing Authorization, in view of the therapies available, to justify treatment by national solidarity.

Yes I know you will pick that to pieces, but as I mentioned it's not available in France and you saying it is I thought I should clarify.

But I'll stop there as this is Jim's thread and I only follow it as I'm interested in his progress. 

thanks for the input Fred on why the French declined the Skilarence. And yet they still keep prescribing Methotrexate which is much more toxic than skilarence.

Jup.. not for me to understand. But who told the French thought logic? Perhaps they were merlotosed?

[mataribot]

It’s about cost, nothing more.

[Bill]

Cost? A little over 3 Australian cents per week unsubsidised currently. Very good things come from China sometimes. Hope you are staying safe and keeping your psoriasis controlled, Jim.

[Caroline]

It’s about cost, nothing more.

No it is not about cost. Over here they won’t blink for any treatment that is cheaper than € 15.000, they will just give it.

[Kat]

I could be wrong but I took the comment that it's all about cost to simply mean drugs that make the most money are prescribed over what may actually be the better (or not) treatments. I do not think it was in reference to the cost of DMF (or any other drug actually) in any way. And if that was the meaning, I agree. I do think money is a huge influence. Pharma is BIG business after all!

[Caroline]

I could be wrong but I took the comment that it's all about cost to simply mean drugs that make the most money are prescribed over what may actually be the better (or not) treatments.  I do not think it was in reference to the cost of DMF (or any other drug actually) in any way.  And if that was the meaning, I agree.  I do think money is a huge influence.  Pharma is BIG business after all!

Well that is true. You e.g. cannot produce a DMF product, without gaining profit, and for the production, you need: scientific evidence that (your version of) the drug works, no matter all the proof that is already there. Luckily ‘you’ (pharma) pay for it ......
You need to comply to hundreds of rules.
You need to go through a long time eating official administrative process (a process that we now know that it can done in two weeks if there is a pandemic threat).
And so on and so on.
We, the government, did not make it easy or cheap to make a drug. Which in some sense is ok, it has to be as safe as possible but it raises the costs with quite a factor.
So that in a way makes the business.

Now depending on how eager and competitive the market is, you can set your price as pharma. Example is Tecfidera. It is just DMF, which also happens to work for MS. As all MS medication is expensive, the aligned the price of it with the common price of MS Medicine, and it gets paid for. As the need is there.
Skilarence is the same, more than 3 times cheaper, but not indicated for MS, so may not be used for it.... and then there is the Bill’s medicine... exactly the same..... no about prices the world has gone mad.

We created a system that makes this possible.
There are even people that have made it their jobs, to influence this system and keep it intact, lobbyists, all for the big money. And they only work on one side. There are no lobbyists that work for the people, suddenly they are then called activists.....

[Bill]

Who would do what I do, Caroline? I don't think that I am in any more danger than anyone else taking DMF, yet there is an aversion to the idea that borders on being unscientific. I have attempted discussions, but they stalled once I pointed out that the product I had did not contain harmful quantities of contaminants at the dosage I was taking. I even thanked one fellow for providing me with information that would allow me to remove up to 90% of the contaminants from my DMF, but said that whilst I had the means to do this I had no indication to do so. I think the problem exists in part because the public is not aware of it.

Cheers

[Caroline]

Who would do what I do, Caroline? I don't think that I am in any more danger than anyone else taking DMF, yet there is an aversion to the idea that borders on being unscientific. I have attempted discussions, but they stalled once I pointed out that the product I had did not contain harmful quantities of contaminants at the dosage I was taking. I even thanked one fellow for providing me with information that would allow me to remove up to 90% of the contaminants from my DMF, but said that whilst I had the means to do this I had no indication to do so. I think the problem exists in part because the public is not aware of it.

Cheers

I am totally in agreement with you Bill

[jiml]

I had a blood test yesterday my first since the beginning of March my doctor has just phoned to give the results which were all within the normal ranges and the lymphocyte count which was 1.07. So a much longer period and no real change from March when the lymphocyte count was 1.15 still no sign of psoriasis returning and the arthritis is virtually gone from my shoulders which kept me awake at night with discomfort and are now back to normal
Going to stick to 5 tablets a day as that seems to be the level I need for control of the arthritis

Due to try to get an appointment to see the dermatologist which m hoping will be a telephone consultation