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[split] Dimethylfumarates and Psoriasis

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[split] Dimethylfumarates and Psoriasis
Beverley Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 607
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Gender: Female
Location: Netherlands
Treatment: Stelera
#21
Sat-14-12-2013, 23:43 PM
Yes it comes from oud-beijerland. Thought yummy was settling down, but it's still a bit iffy.

Still more patches of P appearing and getting bigger. Thought it would have slowed down by now. Beginning to wonder if this drug is for me.

A bit down cos I've had 3 years total clearance for the first time in over 30 years and since stopping the ciclo it's still retuning. Can't even dye my hair. Got nail P which I never had before.

Back at derm in new year so will see what my options are.

Plus side.....joints don't hurt as much
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jiml Offline
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Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#22
Sun-15-12-2013, 00:01 AM
In England with Fumaderm we start with Fumaderm initial which is a weaker strength version after a month on that we then go on to the Fumaderm 120mg tablets
It is not a fast moving drug it does take a while to work on your psoriasis, but if it does start working the side effects will get better, well mine did
I would ask your Dermo about psorinovo on you next visit as it seems to be the. Drug that Caroline says works well for her
I have been clear for a year on it now and virtually no side effects anymore Thumb
I would say get a replacement for the one you are on and then give it a couple of months, before giving up Thumb
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Caroline Offline Author
You must hurry if you ever want to catch a chicken...
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Posts: 26,597
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Location: In between the tulips
Psoriasis Score: 3
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Treatment: Got back to DMF slow release
#23
Sun-15-12-2013, 10:28 AM
Hi Beverley,

Sorry to tell you, but Oud-Beijerland is the wrong stuff. You must go for Psorinovo of Mierlo-Hout.
The advantages are very clear as Psorinovo is coated and slow release. The effect of this is that your intestines are much more quiet. Almost no cramps. And because of the fact that there are no additions you can go over the 6x120 mg per day up to even 12 or more.
There is also a protocol of a building up phase, a plateau phase and a reduction phase.

As Jim says it is a slow drug, it may take months to work, but if it works it does a steady job.
You say your joints don't hurt so much, do you have PsA also?
If your joints are less hurting, that is already an indication that the drug is working.

If I were you I would take up contact (sorry for the sentence construction Jim, but Beverley will understand) with the patients community of Psorinovo. They are very experienced. See the website [web]www.psoriasistherapie dot nl[/web].

Caroline
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jiml Offline
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#24
Sun-15-12-2013, 11:34 AM
Caroline No problem here understanding your English it seems very good to me Thumb
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Beverley Offline
100 + Member I Just Cant Stop !

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#25
Sun-15-12-2013, 13:37 PM
Will ask the derm about psorinovo at my next visit.
Not been diagnosed with PsA. Blood test and x-rays didn't show anything. Pain is mostly hands and feet and 1 elbow. It's worse now than when I was tested. Rheumatoloog suspects that it's psoriasis linked. Back there tomorrow and this time it's also more visible.

Your sentence construction in English is much better than my sentence construction in Dutch Caroline.

Came across the psoriasis vereniging Nederland site. That was very informative.

Ate chocolate last night. Maybe that's why I had a rotten tummy. Had an idea that chocolate was a no go. Still had to check though. Purely for research purposes.
Won't be visiting the chocolate factory next week for Xmas choccies.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
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Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#26
Sun-15-12-2013, 13:44 PM
(Sun-15-12-2013, 13:37 PM)Beverley Wrote: Will ask the derm about psorinovo at my next visit.
Not been diagnosed with PsA. Blood test and x-rays didn't show anything. Pain is mostly hands and feet and 1 elbow. It's worse now than when I was tested. Rheumatoloog suspects that it's psoriasis linked. Back there tomorrow and this time it's also more visible.

Your sentence construction in English is much better than my sentence construction in Dutch Caroline.

Came across the psoriasis vereniging Nederland site. That was very informative.

Ate chocolate last night. Maybe that's why I had a rotten tummy. Had an idea that chocolate was a no go. Still had to check though. Purely for research purposes.
Won't be visiting the chocolate factory next week for Xmas choccies.

What a shame when chocolate messes you up NoNo I think it's worth doing the research again Thumb
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Caroline Offline Author
You must hurry if you ever want to catch a chicken...
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Posts: 26,597
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Psoriasis Score: 3
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Treatment: Got back to DMF slow release
#27
Sun-15-12-2013, 19:49 PM
(Sun-15-12-2013, 13:37 PM)Beverley Wrote: Will ask the derm about psorinovo at my next visit.
Hi Beverley,
It is good to know that the derms are only gaining slow conscienceness on using DMF and specifically Psorinovo, with the treatment of psoriasis. Most of them are on the tracks of the farmaceuts. Now, with the appearance of DMF for MS, more conscienceness may grow. So if you "want" to use Psorinovo, you must put your derm under pressure.
Quote:Not been diagnosed with PsA. Blood test and x-rays didn't show anything.
A blood test can never diagnose PsA, this kind of arthritis cannot be seen. An x-Ray though might reveal changes in your joints.
Quote:Pain is mostly hands and feet and 1 elbow. It's worse now than when I was tested.
Is the pain in the small joints? Fingers and toes? Than that is an indication of PsA. Elbow is not normally a place for PsA.
Quote:Rheumatoloog suspects that it's psoriasis linked. Back there tomorrow and this time it's also more visible.
keep us posted!
Quote:Your sentence construction in English is much better than my sentence construction in Dutch Caroline.
Thank you ! I really do my best to write as English as possible, but sometimes it is hard.
Your remark says to me that you are not native Dutch Smile, are you ?
A bit a pity, I was already excited to write a little in Dutch to you.
Quote:Came across the psoriasis vereniging Nederland site. That was very informative.
That is correct, it is informative but "general", the site of the Vereniging Psorinovo, is specialized on DMF. If you join one of both as a member, your membership will be valid for both of them. PVN and VP work together toward a scientific research on DMF, as despite its long history, albeit 20 years, of excellent usefulness is still not good accepted by most Meds (doctors).
Quote:Ate chocolate last night. Maybe that's why I had a rotten tummy. Had an idea that chocolate was a no go. Still had to check though. Purely for research purposes.
Won't be visiting the chocolate factory next week for Xmas choccies.
Chocolate should not be a problem, apart from the fact that it is quite fatty, in my own experience, fat food is not good for me..... So no Big Macs for me..Sad Sad

Caroline
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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#28
Mon-16-12-2013, 16:23 PM
(Sun-15-12-2013, 19:49 PM)Caroline Wrote: Your remark says to me that you are not native Dutch Smile, are you ?

Psssssst! RE: Dimethylfumarates and Psoriasis Wink
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Caroline Offline Author
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,597
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
#29
Mon-16-12-2013, 18:52 PM
(Mon-16-12-2013, 16:23 PM)Fred Wrote:
(Sun-15-12-2013, 19:49 PM)Caroline Wrote: Your remark says to me that you are not native Dutch Smile, are you ?

Psssssst! RE: Dimethylfumarates and Psoriasis Wink

Doh i Sometimes read soooo badly.... Completely occupied by the DMF. Tongue
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Beverley Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 607
Threads: 22
Joined: Oct 2013
Gender: Female
Location: Netherlands
Treatment: Stelera
#30
Wed-08-01-2014, 13:59 PM
Well, was back at the derm today. Fumerate isn't working and still getting new spots.
Stomach finally settled and pain in hands and feet less though.
Time to stop Fumarate. Now being tested for suitability for Humira.
Thanks for all the info and advise here.
Going to look for a Humira thread now thanks
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