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[split] Dimethylfumarates and Psoriasis

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[split] Dimethylfumarates and Psoriasis
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#111
Thu-25-09-2014, 21:33 PM
Yes, this is where I read most and saw pics,that was on this website Psoriasistherapie dot nl
My concern was - it all looks so promising, and all examples are in much better condition. I also read it should help around 75% but was not sure how is it confirmed or was there any study done? (Apart from Fumaderm, where there is much more studies... I am hoping it will be better than Fumaderm actually.) I have read on Polish forum that Biogen is preparing new drug called Panaclar and it will be replacing Fumaderm. It is supposed to be much improved version of Fumaderm that contains...... surprise - only DMF.........(!)
That made me thinking I really must try Psorinovo! after 1 month of preparing prescription and , uf, money I finally got some supply!
J.
Quote
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#112
Thu-25-09-2014, 22:03 PM
(Thu-25-09-2014, 21:33 PM)LadyBug Wrote: Yes, this is where I read most and saw pics,that was on this website Psoriasistherapie dot nl
My concern was - it all looks so promising, and all examples are in much better condition. I also read it should help around 75% but was not sure how is it confirmed or was there any study done? (Apart from Fumaderm, where there is much more studies... I am hoping it will be better than Fumaderm actually.) I have read on Polish forum that Biogen is preparing new drug called Panaclar and it will be replacing Fumaderm. It is supposed to be much improved version of Fumaderm that contains...... surprise - only DMF.........(!)
That made me thinking I really must try Psorinovo! after 1 month of preparing prescription and , uf, money I finally got some supply!
J.

Now that is interesting I hadn't heard that Biogen were introducing a new DMF drug. I will have to look that up

Regarding your psorinovo I would say beware of increasing your dose too high too soon. It may well work faster but it will possibly cause you to have exaggerated side effects. I hope it doesn't but if you do start suffering be prepared to take a step backwards..
Good luck and keep updating it's helpful information
Quote
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,951
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#113
Thu-25-09-2014, 22:09 PM
(Thu-25-09-2014, 22:03 PM)jiml Wrote:
(Thu-25-09-2014, 21:33 PM)LadyBug Wrote: Yes, this is where I read most and saw pics,that was on this website Psoriasistherapie dot nl
My concern was - it all looks so promising, and all examples are in much better condition. I also read it should help around 75% but was not sure how is it confirmed or was there any study done? (Apart from Fumaderm, where there is much more studies... I am hoping it will be better than Fumaderm actually.) I have read on Polish forum that Biogen is preparing new drug called Panaclar and it will be replacing Fumaderm. It is supposed to be much improved version of Fumaderm that contains...... surprise - only DMF.........(!)
That made me thinking I really must try Psorinovo! after 1 month of preparing prescription and , uf, money I finally got some supply!
J.

Now that is interesting I hadn't heard that Biogen were introducing a new DMF drug. I will have to look that up

Jim it could be to do with what I posted here about Biogen buying out Fumaderm: Fumaderm what's it's future? plus don't forget they are also making Tecfidera. Could be under a different name in Poland.
Quote
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#114
Thu-25-09-2014, 22:24 PM (This post was last modified: Thu-25-09-2014, 22:25 PM by jiml.)
(Thu-25-09-2014, 22:09 PM)Fred Wrote:
(Thu-25-09-2014, 22:03 PM)jiml Wrote:
(Thu-25-09-2014, 21:33 PM)LadyBug Wrote: Yes, this is where I read most and saw pics,that was on this website Psoriasistherapie dot nl
My concern was - it all looks so promising, and all examples are in much better condition. I also read it should help around 75% but was not sure how is it confirmed or was there any study done? (Apart from Fumaderm, where there is much more studies... I am hoping it will be better than Fumaderm actually.) I have read on Polish forum that Biogen is preparing new drug called Panaclar and it will be replacing Fumaderm. It is supposed to be much improved version of Fumaderm that contains...... surprise - only DMF.........(!)
That made me thinking I really must try Psorinovo! after 1 month of preparing prescription and , uf, money I finally got some supply!
J.

Now that is interesting I hadn't heard that Biogen were introducing a new DMF drug. I will have to look that up

Jim it could be to do with what I posted here about Biogen buying out Fumaderm: Fumaderm what's it's future? plus don't forget they are also making Tecfidera. Could be under a different name in Poland.

Yes just been looking it up it's biogens BG12 I think which is roughly the same as tecfidera or Fumaderm
Quote
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#115
Thu-25-09-2014, 23:57 PM
Yes, BG-12
Tecfidera has just been registered here in Poland for couple months, its non refundable and patient must cover an outrageous price of 1500 EUR / month, which is way over monthly average salary in POL... :(

Thank you for warning Jim.

Could you tell me what final dose are you on with Psorinovo?
And Caroline? As it seems worked for you well, how many mg are taking daily?

J.
Quote
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#116
Fri-26-09-2014, 00:13 AM (This post was last modified: Fri-26-09-2014, 00:16 AM by jiml.)
Hi Joana
It's criminal what they are charging for such a cheaply produced drug. Bill has told us the cost of the raw materials which is minimal.
I don't know what your system of healthcare is in Poland. Is it insurance based or is it state funded?

I am not on psorinovo but Fumaderm. My maximumm dose of that was 600mg a day which was 2 tablets morning one with lunch and two with my evening meal. I was on that dose for a couple of months then started reducing got down to two tablets a day..... But that was not enough .....my psoriasis started to come back. I am now on three tablets a day and have my psoriasis more or less under control

Jim
Quote
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#117
Fri-26-09-2014, 00:19 AM
(Fri-26-09-2014, 00:13 AM)jiml Wrote: Hi Joanna
It's criminal what they are charging for such a cheaply produced drug. Bill has told us the cost of the raw materials which is minimal.
I don't know what your system of healthcare is in Poland. Is it insurance based or is it state funded?

I am not on psorinovo but Fumaderm. My maximumm dose of that was 600mg a day which was 2 tablets morning one with lunch and two with my evening meal. I was on that dose for a couple of months then started reducing got down to two tablets a day..... But that was not enough .....my psoriasis started to come back. I am now on three tablets a day and have my psoriasis more or less under control

Jim
It is state funded. I know, the raw material is not even 5% of the final cost... Bill actually opened my eyes, as my first thought was to buy a supply from China as well, however I thought it was kind of "technical" DMF, lets call it "dirty", in similar way as alcohol to drink or technical alcohol for example to clean electronics... But it definitely seems to be working for him. Anyway he was the brave man to me for trying! Smile

Unfortunately Fumaderm is not registered here, it is only possible to get it for special import if it saves life... and it takes 6 months usually or buy myself which is not possible with pricetag set over 300 EUR / box
Quote
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#118
Fri-26-09-2014, 00:29 AM
(Fri-26-09-2014, 00:19 AM)LadyBug Wrote:
(Fri-26-09-2014, 00:13 AM)jiml Wrote: Hi Joanna
It's criminal what they are charging for such a cheaply produced drug. Bill has told us the cost of the raw materials which is minimal.
I don't know what your system of healthcare is in Poland. Is it insurance based or is it state funded?

I am not on psorinovo but Fumaderm. My maximumm dose of that was 600mg a day which was 2 tablets morning one with lunch and two with my evening meal. I was on that dose for a couple of months then started reducing got down to two tablets a day..... But that was not enough .....my psoriasis started to come back. I am now on three tablets a day and have my psoriasis more or less under control

Jim
It is state funded. I know, the raw material is not even 5% of the final cost... Bill actually opened my eyes, as my first thought was to buy a supply from China as well, however I thought it was kind of "technical" DMF, lets call it "dirty", in similar way as alcohol to drink or technical alcohol for example to clean electronics... But it definitely seems to be working for him. Anyway he was the brave man to me for trying! Smile

Unfortunately Fumaderm is not registered here, it is only possible to get it for special import if it saves life... and it takes 6 months usually or buy myself which is not possible with pricetag set over 300 EUR / box
Yes bill is very brave to go down the do it yourself route but he saw the possibilities and as there was no DMF available went down the route he has chosen. He seems to be doing extremely well on it and monitoring well himself

The price of Fumaderm here is around £2:00 a tablet that's £140 a box of 70

Is the state funding psorinovo for you or are you buying it yourself?
Quote
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#119
Fri-26-09-2014, 00:37 AM
(Fri-26-09-2014, 00:29 AM)jiml Wrote:
(Fri-26-09-2014, 00:19 AM)LadyBug Wrote:
(Fri-26-09-2014, 00:13 AM)jiml Wrote: Hi Joanna
It's criminal what they are charging for such a cheaply produced drug. Bill has told us the cost of the raw materials which is minimal.
I don't know what your system of healthcare is in Poland. Is it insurance based or is it state funded?

I am not on psorinovo but Fumaderm. My maximumm dose of that was 600mg a day which was 2 tablets morning one with lunch and two with my evening meal. I was on that dose for a couple of months then started reducing got down to two tablets a day..... But that was not enough .....my psoriasis started to come back. I am now on three tablets a day and have my psoriasis more or less under control

Jim
It is state funded. I know, the raw material is not even 5% of the final cost... Bill actually opened my eyes, as my first thought was to buy a supply from China as well, however I thought it was kind of "technical" DMF, lets call it "dirty", in similar way as alcohol to drink or technical alcohol for example to clean electronics... But it definitely seems to be working for him. Anyway he was the brave man to me for trying! Smile

Unfortunately Fumaderm is not registered here, it is only possible to get it for special import if it saves life... and it takes 6 months usually or buy myself which is not possible with pricetag set over 300 EUR / box
Yes bill is very brave to go down the do it yourself route but he saw the possibilities and as there was no DMF available went down the route he has chosen. He seems to be doing extremely well on it and monitoring well himself

The price of Fumaderm here is around £2:00 a tablet that's £140 a box of 70

Is the state funding psorinovo for you or are you buying it yourself?

state will not fund any drug that is not officially registered in Poland, Psorinovo and Fumaderm are not. I buy Psorinovo myself.
Quote
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#120
Fri-26-09-2014, 00:42 AM
(Fri-26-09-2014, 00:37 AM)LadyBug Wrote:
(Fri-26-09-2014, 00:29 AM)jiml Wrote:
(Fri-26-09-2014, 00:19 AM)LadyBug Wrote:
(Fri-26-09-2014, 00:13 AM)jiml Wrote: Hi Joanna
It's criminal what they are charging for such a cheaply produced drug. Bill has told us the cost of the raw materials which is minimal.
I don't know what your system of healthcare is in Poland. Is it insurance based or is it state funded?

I am not on psorinovo but Fumaderm. My maximumm dose of that was 600mg a day which was 2 tablets morning one with lunch and two with my evening meal. I was on that dose for a couple of months then started reducing got down to two tablets a day..... But that was not enough .....my psoriasis started to come back. I am now on three tablets a day and have my psoriasis more or less under control

Jim
It is state funded. I know, the raw material is not even 5% of the final cost... Bill actually opened my eyes, as my first thought was to buy a supply from China as well, however I thought it was kind of "technical" DMF, lets call it "dirty", in similar way as alcohol to drink or technical alcohol for example to clean electronics... But it definitely seems to be working for him. Anyway he was the brave man to me for trying! Smile

Unfortunately Fumaderm is not registered here, it is only possible to get it for special import if it saves life... and it takes 6 months usually or buy myself which is not possible with pricetag set over 300 EUR / box
Yes bill is very brave to go down the do it yourself route but he saw the possibilities and as there was no DMF available went down the route he has chosen. He seems to be doing extremely well on it and monitoring well himself

The price of Fumaderm here is around £2:00 a tablet that's £140 a box of 70

Is the state funding psorinovo for you or are you buying it yourself?

state will not fund any drug that is not officially registered in Poland, Psorinovo and Fumaderm are not. I buy Psorinovo myself.

Ouch that sounds like a large amount of money to come out of your income each month
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