Jims journey on Skilarence

[Caroline]

What a strange situation as you would have thought that as it's so well known,as such, that more testing and development would have been done.k

There's no money to be made with it and I'm sure I only got it because I used to go to the training hospital for trainees to practice on and I mentioned to the professor training the doctors that I was suffering with methotrexate and he told me to ask about changing to Fumaderm ...if he hadn't mentioned it I'm sure it would not have been offered
I am one of very few in our region on DMF and the derms don't seem to want patients on it at least they didn't with Fumaderm as it was not an approved drug so things may have changed since the approval of skilarence

The producer should more work on the promotion of the stuff.... I'll contact them...

[jiml]

Go for it they need telling

[Kat]

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. 

Again, I disagree.  It could be a language thing.... I think at times that things are prescribed with FULL knowledge there are perhaps safer or more effective treatments.  I am not presuming that DMF falls into that category but I'm not saying it isn't as I also admit that MY knowledge is lacking.  I think pharma (at least in the US) controls a lot of what doctors prescribe.  A lot of research is done by them and since they are the ones that make the most money from what drugs are prescribed, I can't discount that it influences things (as in they push the money makers over effectiveness) Do I think all doctors know about DMF?  No of course not.

And I am on your side, I think it is a great treatment that has helped quite a few people here.  However, since some have not had the same experiences not everyone is going to agree that it is the best thing since sliced bread (an American saying but means it isn't everyone's cup of tea)  So I think it's okay that not everyone uses the same thing, as long as it works for them and they are happy, it's all good. 

I do however think that although there may be a LACK of knowledge, I think saying they have NO knowledge is inaccurate.  And on that we will probably just have to agree to disagree. 

[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. 

Again, I disagree.  It could be a language thing.... I think at times that things are prescribed with FULL knowledge there are perhaps safer or more effective treatments.  I am not presuming that DMF falls into that category but I'm not saying it isn't as I also admit that MY knowledge is lacking.  I think pharma (at least in the US) controls a lot of what doctors prescribe.  A lot of research is done by them and since they are the ones that make the most money from what drugs are prescribed, I can't discount that it influences things (as in they push the money makers over effectiveness)  Do I think all doctors know about DMF?  No of course not.

And I am on your side, I think it is a great treatment that has helped quite a few people here.  However, since some have not had the same experiences not everyone is going to agree that it is the best thing since sliced bread (an American saying but means it isn't everyone's cup of tea)  So I think it's okay that not everyone uses the same thing, as long as it works for them and they are happy, it's all good. 

I do however think that although there may be a LACK of knowledge, I think saying they have NO knowledge is inaccurate.  And on that we will probably just have to agree to disagree. 

Okay.... I agree with a major lack of knowledge.

If I, just a patient without medical training, over here in Europe have to tell a specialist rheumatologist about DMF and that it works for Psoriatic Arthritis and he can only answer me that he has “heard” that it does not work (and he is not the first I have met on that) I can only agree with “major lack of”.
In the states knowledge is even less, you have a lot less history with DMF.

I have never said that it is kind of WD40, but I think that can be used much wider and thus cheaper, and more effective than it is used up to now. And of course it will not work with everyone. It certainly is not everyone’s cup of tea, I know several people who have tried, but did not succeed.
It is even more logical to use it, as DMF is able to turn down, reduce the activity, of a number of interleukins which the bio’s also do, only the bio’s completely disable specific il-‘s . DMF works wider and with a tunable strength/impact.

The side effects are known, can be measured, partly controlled are not toxic. But.. it will not work for everyone.

[Kat]

Okay.... I agree with a major lack of knowledge.   

If I, just a patient without medical training, over here in Europe have to tell a specialist rheumatologist about DMF and that it works for Psoriatic Arthritis and he can only answer me that he has “heard” that it does not work (and he is not the first I have met on that) I can only agree with “major lack of”. 
In the states knowledge is even less, you have a lot less history with DMF.

I have never said that it is kind of WD40, but I think that can be used much wider and thus cheaper, and more effective  than it is used up to now. And of course it will not work with everyone. It certainly is not everyone’s cup of tea, I know several people who have tried, but did not succeed.
It is even more logical to use it, as DMF is able to turn down, reduce the activity, of a number of interleukins which the bio’s also do, only the bio’s completely disable specific il-‘s . DMF works wider and with a tunable strength/impact.

The side effects are known, can be measured, partly controlled are not toxic. But.. it will not work for everyone. 

And I can agree with all of the above. I wonder if the "cheaper" is part of the issue here, as I said I think pharma pushes the more expensive drugs, they get all the attention. I see constant commercials to ask your doctor about "Cosentyx, Tremfya, Ilumya" and some others. I've never seen a commercial about oral meds and/or topicals (other than infomercial type scam stuff on topicals and those are rare) And I'm not against biologics! I am FOR anything that works just to be clear!

Also I did find this info: (Note: Tecfidera (dimethyl fumarate) is a brand-name prescription medication. It’s used to treat relapsing forms of multiple sclerosis (MS) in the United States)

Tecfidera is used off-label to treat plaque psoriasis. Off-label use is when a drug is approved to treat one condition but is used to treat a different condition. In a clinical , about 33 percent of people taking Tecfidera had their plaques clear or almost completely clear after 16 weeks of treatment.

[JohnB]

Apologies for the hijack Jim, I've been banging on about wanting to try a DMF medication for years now and my Dermys are VERY resistant to the drug. Primarily it came down to cold hard cash. As Fumaderm was and is still not fully licenced for use on Ps the Dermy had to go to the Hospital trust begging for funding and as I am lead to believe all bar one patient succeeded on the drug. The trust put a 12 week limit for clearance and if it was not substantial the funding got pulled. Now in my experience 12 weeks on any oral has never given me anything like a substantial clearance. Most dropped the drug through the  side  effects  though. This 'medical' opinion and the NICE guidelines for Skilarence don't seem to help. Even though Skilarence is on ticket for Ps it still has to be funded by the local Trust and although it's not the eye wateringly extortionate cost of a bio it is still expensive. Maybe they need to talk to Bill   

[jiml]

@JohnB hijack away it's all relevant and the parts I need to retrieve are in my journal 

I'm pleased to hear you are still trying for it John and if they put a 12 week limit in getting clearance then that is never or rarely going to work as the build up stage of skilarence will take over one month then a slow build up from one tablet a day to six a day over the next few weeks then a plateau period while it works before gradually reducing till psoriasis begins to reappear then up by one tablet which should keep working
My costs at list price are £3800a year with tablets costing £2.11 each but many can reduce the tablets lower than mine which again would reduce the cost
Bear in mind these are manufacturers prices and I would hope the NHS negotiate a better deal than that

I suppose it is expensive when compared to cyclosporine  £0.28 a tablet
And acetretin at just under £.0.50 a tablet

[Caroline]

Apologies for the hijack Jim, I've been banging on about wanting to try a DMF medication for years now and my Dermys are VERY resistant to the drug. Primarily it came down to cold hard cash. As Fumaderm was and is still not fully licenced for use on Ps the Dermy had to go to the Hospital trust begging for funding and as I am lead to believe all bar one patient succeeded on the drug. The trust put a 12 week limit for clearance and if it was not substantial the funding got pulled. Now in my experience 12 weeks on any oral has never given me anything like a substantial clearance. Most dropped the drug through the  side  effects  though. This 'medical' opinion and the NICE guidelines for Skilarence don't seem to help. Even though Skilarence is on ticket for Ps it still has to be funded by the local Trust and although it's not the eye wateringly extortionate cost of a bio it is still expensive. Maybe they need to talk to Bill   

Yes, they do need to talk to Bill. It is a stubborn group.. which again... is not backed by much knowledge. (did I say that before ?? )
And viewing this Only 1/4 patients achieved complete skin clearance after 6 months of biologics, a clearance time of 12 weeks is absurd.... just rub it in John.
And ... not to mention the costs of a biological.

Yes. Most are dropping because of the side effects. Almirall has been warned, but did not listen, therefore we still have the slow release version in order to try for for when side effects, that is tummy ache, are too worse.

[Fred]

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. 

[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. 

Indeed Fred.. it is quatsch. Totally does not fit to 35 years of Dutch experience and the risks are far overrated, there is only one risk PML, but that is easy to control.
It all comes down to one thing, lack of knowledge, and not willing to have a open mind.
But it is a valuable text, I will discuss it with Almirall..