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intro ArteMie

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intro ArteMie
artemie Offline
Be careful about reading health books, you might die of a misprint

100 + Member I Just Cant Stop !
Posts: 681
Threads: 9
Joined: Jun 2017
Gender: Female
Location: Netherlands
Psoriasis Score: 4
Treatment: Diet started 22th july 2019
#1
Fri-23-06-2017, 08:44 AM
hi,

How nice to have found such a large and savvy community. I'm from Amsterdam, the Netherlands. This weeks visit to the AMC academic medic hospital gave me a PASI 11.5 score.

Had P since I was 10 or so and it's been on and off, DMF gave relief until the common side effects got to bad. Diet is unsustainable and also doesn't work, there are lots of stress triggers for me.

Now, after 'shopping' at three hospitals, the AMC is the first hospital that says YES to biologicals.
How and where do I put up a proper post with my dilemma there? I can have a choice of meds (hooray?) and I'd like to ask the opinion of people on this forum.

And I want an avatar, but I'm not cleared for changing details on my login yet?

Cheerio and thanks!

   ArteMie
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
#2
Fri-23-06-2017, 09:20 AM
Hi Artimie and  Welcome to the club you will find us a very friendly group of fellow sufferers. And this site gives us a platform to share our experiences and support each other through the good periods and the bad periods with the disease, there is so much information here, about the disease and its treatment. If you need any help navigating around the site or a question just shout out and someone will reply

It's good to read if your experience, but sorry to hear DMF side effects got too bad to continue, but the positive side is you have been offered a biological drug which is brilliant, have you read through on here what is available ? If not look here Biological Treatments For Psoriasis


I'm sure you will get a lot of opinions here about the various options that are available from other members but as I'm still on Funaderm and haven't needed bios,  I'll let others offer advice  Thumb
A great way to keep in touch with the latest news and members threads is to subscribe to the clubs free monthly newsletter Groups
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,560
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
#3
Fri-23-06-2017, 09:39 AM
Hi Artemie,

Welcome to psoriasisclub.

Did you use Psorinovo or another form of DMF?

If the second, than it makes sense to try Psorinovo because this is enteric coated and slow release, so will gradually release in your intestines lowering the side effects.

Certainly I personally would try that before going to the bio's. It is cheaper and less "strong" than the bios. I have used it myself for a very long time without problems.

What kind of side effects did you have by the way?

Cheers,
Caroline

P.s. Adding more posts will gradually give you more rights and views on the forum, like the possibility to send and receive PM's after you have done 5 posts.
artemie Offline Author
Be careful about reading health books, you might die of a misprint

100 + Member I Just Cant Stop !
Posts: 681
Threads: 9
Joined: Jun 2017
Gender: Female
Location: Netherlands
Psoriasis Score: 4
Treatment: Diet started 22th july 2019
#4
Fri-23-06-2017, 09:55 AM
tnx for your reply Fred =] Caroline; After endless research (google) I insisted on Psorinovo just because of the enteric coating and the slow release... It worked fantastic, but I  was off it for a while for personal reasons. When I went back on it after a year and a half I couldn't take the side effects anymore. It felt like the DMF without enteric coating and slow release. painful tummy, toilet runs, etcetera. 

Now, I've been told at the AMC hospital:

or partake in a study, where 50% of the participants get Humira and a low dose of MTX, and 50% of the participants only get Humira.
or I can take Cosentyx. Although they don't recommended starting on Cosentyx straight away, because they don't know enough yet about the long term effects, whereas in Humira they know a lot more.

Meaning if I partake, i could be either on just Humira or Humira and MTX.

AMC and other hospitals in the Netherlands want to know if Humira works longer if combined with MTX. About 50% of Humira users start to develop antibodies and Humira stops working. There's a chance that MTX slows down or turns of this development of antibodies.

I really don't want biologicals, or maybe I do, hard choice! 

My question is; what is the preference of members here if given the choice between Humira and Cosentyx. Should that be posted here or in a new thread, if so, where?

Tnx!
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,108
Threads: 3,898
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#5
Fri-23-06-2017, 10:47 AM
Hello ArteMie  Welcome to Psoriasis Club.

I see you have an avater so I assume you no longer need help with that? If you do need any help finding your way around the forum this section has a lot of information: Help using the forum or just shout out and someone will find you.

As for where to post your questions about about the Bio's and get others to give feedback it would be best to start a new thread here: Prescribed Treatments For Psoriasis

*But my quick answer to your question would be to go for the Cosentyx. But a new thread would get you better answers.

Regards.

Fred.
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,560
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
#6
Fri-23-06-2017, 10:50 AM
I hope you don't confuse me with Fred.    Big Grin  Who has not welcomed you yet, because of some computer trouble, which will be solved soon.

But anyway, both Fred and I would not go to something with MTX.
I have used MTX, before finding Psorinovo (good that you insisted on that and a pity that you could not restart with that, you could send a mail to e.g. Dr. V** ****, maybe he can explain, he has gigantic experience) .
MTX was terrible for me, I felt my whole body resist to that stuff.
Fred has the same opinion on it and himself is very content with Cosentyx. Cosentyx seems to work very good for psoriatic arthritis.
Dave though is a real MTX fan. So on the forum the ideas are divided.

I think more of us will give an opinion. Myself I went a totally different direction. You can see that in my journal, which you cannot see yet... 85

Caroline
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,108
Threads: 3,898
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#7
Fri-23-06-2017, 10:56 AM
(Fri-23-06-2017, 10:50 AM)Caroline Wrote: I hope you don't confuse me with Fred.    Big Grin  Who has not welcomed you yet, because of some computer trouble, which will be solved soon.

An easy mistake. Big Grin

I posted above you. Smile
artemie Offline Author
Be careful about reading health books, you might die of a misprint

100 + Member I Just Cant Stop !
Posts: 681
Threads: 9
Joined: Jun 2017
Gender: Female
Location: Netherlands
Psoriasis Score: 4
Treatment: Diet started 22th july 2019
#8
Fri-23-06-2017, 11:10 AM
Fred; yep, avatar is sorted, it's one of a series of mugs I design, this one just for at the office situations =] Go work-ethos.

Caroline tnx for your reply, you don't happen to have dr. ***** e-mail I suppose... ? or how to contact him. Say 23.05 on a saturday night? (just kidding!)  I also look forward to reading your journal, when I have clearance.
tnx for advice, I'll start a new thread in the right place. 
Soft of rooting for the Cosentyx, but want to be sure. Messing with the immune system is kinda scary, but summer dresses are collecting dust.

   ArteMie



Edit by Fred doctors name removed.
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,147
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#9
Fri-23-06-2017, 11:16 AM
Hi ArteMie! Wave
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,108
Threads: 3,898
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#10
Fri-23-06-2017, 11:20 AM
I have removed the mention of doctor as it's against our rules to post doctors names.

I will send a PM to Caroline for you with the doctors name you mentioned in case she missed it.

Fred.
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