Jims journey on Skilarence

[jiml]

I'm intrigued Jim. Is this tuning being done off your own back or is this something you discussed with your Dermy.

I generally get the feeling mine takes a dim view when if comes to self experimentation

I had the discussion with my dermatologist when I started to get psoriatic arthritis he sent me  to the rheumatologist who said she wanted me on methotrexate I asked if it was to combine with the Skilarence but she said no and  to stop them and just use methotrexate. I asked why couldn't I increase the dose of the Skilarence (it was actually fumaderm at the time but using skilarence now so I'll  relate it to that as it's a basic swap like for similar) after telling her I was not going down that route as for the first time in 50 years I  had a drug that worked ...she more or less told me to go away if I wouldn't take her advice so went and spoke to dermatology and explained my predicament and told him that in Europe it is used widely and works well on the arthritis.. he repeated there was no evidence that it worked on the arthritis but let me have my way and let me increase the dose from 4 tablets which controls the psoriasis to 5 which I was hopeful would help with the arthritis and it makes a huge difference. So he was happy with me increasing the dose and pleased that it worked. He seems happy that my bloods are done regularly and stay well within the normal ranges

So in answer to your question no he doesn't Mind as I don't increase beyond his prescribed dose but reduced to see if I could manage on lower dose

[Caroline]

Well Kat... that is what right is the point about, no knowledge.

I know that they are treating MS with Tecfidera.
The Max dose they are using is two pills 240mg a day, which is less than Jim.
BUT..... i know they have a wrong building up scheme, they are going much too fast, that is why one of the side effects is PML a braindisease, which is NOT caused by the DMF, but by the too low lymphocytes because of the too fast buildup. And, not to exclude, maybe because of the type of disease that MS is. It could be that the reaction to DMF is stronger that with Psoriasis.... but the build up is too fast. 

Indeed I see all kinds of reports of liver disease with Tecfidera. But....what is the real cause? As we over here with 35 years of history, hardly have any liver problems. Is it so that the liver is already damaged by the MS?

The funny thing is... in the leaflet of Skilarence (this is not off topic.. ) It says that is may cause liver and kidney problems. But did you know that they did not test that.. ?    They took it over from other leaflets and historical data. And lots of that information is coming from the use of ... Fumaderm.
And yes, I fully agree that Fumaderm may have caused liver and kidney problems, because it contained a toxic part called MEF. This has all been investigated by Nicolle Litjens in her promotion. (Real Science)
But plain DMF... minor problems over here.
I hope Almiral is keeping records on how Skilarence is doing in practice and build up some historical knowledge that can get rid of the “believe”, “seems” and “I heard that”, and give clean numbers. 
There are too much rumours going around on this medication.

[Caroline]

I'm intrigued Jim. Is this tuning being done off your own back or is this something you discussed with your Dermy.

I generally get the feeling mine takes a dim view when if comes to self experimentation

I had the discussion with my dermatologist when I started to get psoriatic arthritis he sent me  to the rheumatologist who said she wanted me on methotrexate I asked if it was to combine with the Skilarence but she said no and  to stop them and just use methotrexate. I asked why couldn't I increase the dose of the Skilarence (it was actually fumaderm at the time but using skilarence now so I'll  relate it to that as it's a basic swap like for similar) after telling her I was not going down that route as for the first time in 50 years I  had a drug that worked ...she more or less told me to go away if I wouldn't take her advice so went and spoke to dermatology and explained my predicament and told him that in Europe it is used widely and works well on the arthritis.. he repeated there was no evidence that it worked on the arthritis but let me have my way and let me increase the dose from 4 tablets which controls the psoriasis to 5 which I was hopeful would help with the arthritis and it makes a huge difference. So he was happy with me increasing the dose and pleased that it worked. He seems happy that my bloods are done regularly and stay well within the normal ranges

So in answer to your question no he doesn't Mind as I don't increase beyond his prescribed dose but reduced to see if I could manage on lower dose

And then to know that MTX does NOT work for the arthritis!!!
Look for the article : A randomized placebo-controlled trial of methotrexate in psoriatic arthritis
In: Rheumatology 2012;51:1368?1377

The insanity of this hits me everytime.

In practice, from a recent interview with a rheumatologist, they only have 50% max success with MTX anyway.

[jiml]

Ohhhh where do I start
@kat feel free to discuss dmf here it's a good place to do it and it's on topic as it's relevant
Caroline is right the tecfidera tablets for ms should have had a build up stage allowing the body to adjust to the invader with Fumaderm and skilarence you do a slow build up by increasing quarter strength tablets on a weekly basis until you are on to the full strength tablets and again increase slowly depending on blood test results.
Again you are right that many drop out because the side effects of abdominal cramps and  bad flushing and some were held back for so long on low doses and it never started to clear so gave up

Why it's not approved in the US I'll never know as there are many people there that can't afford treatment and it would be a great alternative to methotrexate at a much lower cost than biologicals

[jiml]

And then to know that MTX does NOT work for the arthritis!!!
Look for the article : A randomized placebo-controlled trial of methotrexate in psoriatic arthritis
In: Rheumatology 2012;51:1368?1377

The insanity of this hits me everytime. 

In practice, from a recent interview with a rheumatologist, they only have 50% max success with MTX anyway.

I'm sure that document has been posted here as I know I've read it some time ago
It was a crazy idea taking me off a drug that works so well for me to put me on a drug that I had failed on 7 years ago and my fear was if I came off it and whatever I was given might not work then they wouldn't let me go back onto skilarence

[Fred]

It's not used in France either.

[D Foster]

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

[Fred]

And then to know that MTX does NOT work for the arthritis!!!
Look for the article : A randomized placebo-controlled trial of methotrexate in psoriatic arthritis
In: Rheumatology 2012;51:1368?1377

The insanity of this hits me everytime. 

In practice, from a recent interview with a rheumatologist, they only have 50% max success with MTX anyway.

I'm sure that document has been posted here as I know I've read it some time ago
It was a crazy idea taking me off a drug that works so well for me to put me on a drug that I had failed on 7 years ago and my fear was if I came off it and whatever I was given might not work then they wouldn't let me go back onto skilarence

Pssssssssssssst: Methotrexate not working for Synovitis in psoriatic arthritis

[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.

[jiml]

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