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[split] Dimethylfumarates and Psoriasis

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[split] Dimethylfumarates and Psoriasis
Caroline Offline Author
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,512
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#91
Thu-25-09-2014, 11:00 AM
(Thu-25-09-2014, 10:46 AM)LadyBug Wrote: Hello everyone! I am new. I have been reading your posts for some time.
I am 23 years old, female. I have experienced many different treatements during last 8 years, creams, ointments, lamps, then youngest bilogical treatment in Poland. Nothing helped. (Well, Humira solved all problems after 1st injection, Psoriasis score went down from around 60 to 0... however now I can only pay it in full by myself, which is not an option nowadays). After doing routine research through the Internet I found Psorinovo info. Ordered.

Now it is the topic I would like to share my experiences, as well as reading yours. I am on "small" dosis now, 2nd week - 2 pills 30mg / day... No side effects, as well as no effects (I hope - YET!)

I am pretty surprised theres almost no info about Psorinovo, its almost suspicious, well...
I purchased Psorex before, but found out it was more a scam than any help.

Starting my new try!
best for all!
Joana

Hi Joana,
Welcome to the forum. If I were you I would start a thread in Introductions to introduce yourself. Or maybe Fred may move this post of you to Introductions.
Wow... using Psorinovo ! That is great!
There is a lot of information about Psorinovo on the internet, you only have got to find it.
I see Bill also logged on, so think he will respond also.

Did you order Psorinovo at Mierlo-Hout? Then you have got the right one.
There is a site of the patients community in the Netherlands, that is totally dealing with Psorinovo. I can send the name of it to you.

I myself are also using it. So if any questions I can answer them.

Have fun on the forum, it is a nice bunch of people.

Cheers,
Caroline
Quote
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#92
Thu-25-09-2014, 11:03 AM
Hello Bill,

yes I have been reading your experiences and found you very brave to purchase DMF directly from Asia, as we have lots of bad experiences with Chinese products in general recently Wink
I am ready for all side effects, really. I am srure after MTX and other drugs it will be no worse! I am really willing to take all just to get a little better and get more confidence again!

Fumaderm is very expensive and I cannot afford it, Psorinovo also but it is more within my reach.... So this will be my way from now on...

I have very little hope, I am more afraid to be disappointed again actually than any other side effect...

Joana
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
#93
Thu-25-09-2014, 11:07 AM
(Thu-25-09-2014, 10:46 AM)LadyBug Wrote: Hello everyone! I am new. I have been reading your posts for some time.
I am 23 years old, female. I have experienced many different treatements during last 8 years, creams, ointments, lamps, then youngest bilogical treatment in Poland. Nothing helped. (Well, Humira solved all problems after 1st injection, Psoriasis score went down from around 60 to 0... however now I can only pay it in full by myself, which is not an option nowadays). After doing routine research through the Internet I found Psorinovo info. Ordered.

Now it is the topic I would like to share my experiences, as well as reading yours. I am on "small" dosis now, 2nd week - 2 pills 30mg / day... No side effects, as well as no effects (I hope - YET!)

I am pretty surprised theres almost no info about Psorinovo, its almost suspicious, well...
I purchased Psorex before, but found out it was more a scam than any help.

Starting my new try!
best for all!
Joana

I can assure you Psorinovo is not a scam..... By the way Welcome to the forum, I know you will get a detailed response from a user of Psorinovo ... Caroline.... No there is not a lot of info mainly because it's a Dutch formulation and there is probably a lot of information on Dutch websites. But Caroline is a user herself and will I'm sure explain more.
It is similar to Fumaderm that I am on where you start on very low dose and build up gradually.
It's not a quick fix but it is very effective in the long term....
I am glad you have been following the site and finally decided to post on here and it would be interesting to follow your progress..
Thanks for joining, you now have more boards open for you to explore
Good luck ...... Jim
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LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#94
Thu-25-09-2014, 11:18 AM
Hi Caroline!

yes it is the "original" Psorinovo from Mierlo-Hout. I have translated some Dutch information, however - its still surprisingly small amount of information on % of people that it worked for... This was information I was looking for the most Wink I hope they just got clear and are just not reporting anymore Wink

J.
Quote
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#95
Thu-25-09-2014, 11:20 AM
Dear Jim,

yes, I was checking many times, Mierlo-Hout was the pharmacy that I ordered it from, however again - theres not much info about them... For me comparable info is on Psorex (MEF or similar as far as I remember), which actuall should not work at all.

Thank you all again for useful posts!

J.
Quote
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#96
Thu-25-09-2014, 11:24 AM
My plan is to take

1x30mg for 4 days
2x30mg another 4
3x30mg further 4 days

and then to follow "recommended" Fumaderm schedule

1x120mg / week 2x120mg / week etc...

do you think it is too fast?
I am now taking 2x30mg and I have absolutely no side effects.

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

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#97
Thu-25-09-2014, 11:39 AM
The Chinese supplier I used was fantastic. DMF is an industrial chemical, so a manufacturing country like China will have plenty available. There is also a biochemist in Germany who makes his own capsules at a cost of about 100 Euros a year. He claims that you can buy pharmaceutical Grade DMF for about 1200 Euros a kilo, although the benefit of having a highly purified product only to mix it with your stomach contents is lost on me. As long as the impurities are not toxic I cannot see a problem.

Good luck.

Bill
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Caroline Offline Author
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,512
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#98
Thu-25-09-2014, 11:42 AM
(Thu-25-09-2014, 11:18 AM)LadyBug Wrote: Hi Caroline!

yes it is the "original" Psorinovo from Mierlo-Hout. I have translated some Dutch information, however - its still surprisingly small amount of information on % of people that it worked for... This was information I was looking for the most Wink I hope they just got clear and are just not reporting anymore Wink

J.

Oh that is easy Smile About 70-75% of the people it is working for.

Caroline
Quote
Caroline Offline Author
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,512
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#99
Thu-25-09-2014, 12:28 PM
(Thu-25-09-2014, 11:20 AM)LadyBug Wrote: Dear Jim,

yes, I was checking many times, Mierlo-Hout was the pharmacy that I ordered it from, however again - theres not much info about them... For me comparable info is on Psorex (MEF or similar as far as I remember), which actuall should not work at all.

Thank you all again for useful posts!

J.

Joanna,
MEF stands for mono-ethyl fumarate.
It is an important substance in psoriasis, but.... if you would take this directly in medication form it will no do anything.
Cheers,
Caroline
Quote
Caroline Offline Author
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,512
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#100
Thu-25-09-2014, 12:37 PM
(Thu-25-09-2014, 11:24 AM)LadyBug Wrote: My plan is to take

1x30mg for 4 days
2x30mg another 4
3x30mg further 4 days

and then to follow "recommended" Fumaderm schedule

1x120mg / week 2x120mg / week etc...

do you think it is too fast?
I am now taking 2x30mg and I have absolutely no side effects.

J.

Joanna,

To me this looks like quite a quick build up.
I myself have built up slowlier, more like
Week 1: 30 mg
Week 2: 60 mg
Week 3: 120 mg
Week 4: 150 mg
Week 5: 180 mg
Week 6: 210 mg
etcetera.
It will take a longer time, but gives a bit more information on the moment it will definitely starts working.
If it starts working you should stick with that dose and continue with that dose during the same time you have built up. So if it took you 9 weeks to build to "starts working", then you should also use 9 weeks for consolidation.
After that you can try to lower again by 30 mg /week until the point that you see it coming back. Then go up 1 step of 30 mg, and than that should be your dose.

Are you under control of a doctor?
Did you make a snapshot of your current bloodvalues?
If you need an overview on what to snapshot, I can send you some.

Caroline
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