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Newbie Chloe Mary :)

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Newbie Chloe Mary :)
Chloe Mary Offline
Newbie


Posts: 4
Threads: 2
Joined: Aug 2020
Gender: Female
Location: The Netherlands
Treatment: topical creams
#1
Fri-21-08-2020, 10:23 AM
Hi guys! I am so glad i found this group! 

Only yesterday I had bloods done to see if i can start Skilarence! I hope I can! I have had Psoriasis since 2016 ( got it after strep throat) , not nearly as terrible as some people but it is certinaly enough to effect my emotional status & outfit choice!!! 

Some days I wake up & think Feck it Ill wear the short dress, but other days I just cant do it!! I have tried to change my diet, I have tried every topical treatment under the sun & I have had Light therapy ( worked well the first time, just not the second!!) 

I am due to be married next July & I really hope I can have this under control by then! I am scared about the potential side effects of the drug but if I dont try Ill never know! 

Anyway sorry for the ramble there.... Looking forward to being a part of this group! 

Wave
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,200
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#2
Fri-21-08-2020, 10:36 AM
Hello Chloe Mary  Welcome to Psoriasis Club.

I'm sure you will soon hear from the DMF gang re Skilarence so I'll just point you here for now. Skilarence

Also if you use the search facility available to members here Search you will find a lot more information about it.

No need to apologize about rambling, we're all good at that.  Big Grin

If you want to get to know some of us better I can suggest the [Group Specific] you will find all sorts of things going on there away from Psoriasis. Be warned though, I'm the only sensible one there.

Regards.

Fred.
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,177
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#3
Fri-21-08-2020, 11:43 AM
Hi Chloe Mary nice to meet you Wave
JohnB Offline
I wanted to be an Engineer when I grew up, but was told I could'nt do both

100 + Member I Just Cant Stop !
Posts: 4,725
Threads: 36
Joined: Jan 2016
Gender: Male
Location: Lancashire UK
Psoriasis Score: 10
Psoriatic Arthritis Score: Hmm Maybe
PQOLS: 5
Treatment: Otezla/Apremilast & Enstilar occasionally.
#4
Fri-21-08-2020, 12:28 PM
Hi Chloe Mary and welcome to our club  Wave
 It's good to see a new face turning up. The search engines dont help when trying to find us.

You are more than welcome to ramble and it is encouraged. It helps immensely to talk to others in the same situation.

As for the Skilarence, I would not hesitate to go on the stuff, it's my next in line choice. For those that can tolerate it it seems to work wonders.

Enjoy your time on here  Big Grin
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
#5
Fri-21-08-2020, 13:00 PM
Hi Chloe Mary and  Welcome  to the club. I'm one of the DMF gang here and on skilarence. I've been on it (or it's equivalent) for over 7 years that's 7 great years virtually symptom free. I hope you get the Skilarence it is a great drug and pretty harmless as long as you have regular blood tests. I can explain a lot about the drug and it's short term side effects another time when you get your prescription.
We are a great bunch of sufferers here and all chip in to support each other and give advice if needed.

I'm sure you can be clear in time for your wedding next year if the drug kicks in  Thumb it's not a fast drug but I've found that when it gets you clear it's nice and easy to manage the odd little side effect
Jim
D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,286
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#6
Fri-21-08-2020, 16:12 PM
Hi Chloe Mary welcome to the club, I am in the Stelara gang but I am sure that you will have good results. Any questions just ask as everyone on here as you will get answers from people who know all about it not people who think that they know. Take care and I look forward to seeing you on the site.
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,589
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
#7
Fri-21-08-2020, 16:22 PM
Hi Cloe Mary,

Welcome to Psoriasisclub !

Andddd.... perhaps welcome to the DMF gang ! Smile

And very nice that you are from the Netherlands, as I am too.

-----
Concerning DMF/Skilarence
-----
There is a load of know how and experience on DMF right over here on Psoriasisclub and in the Netherlands, although experience with DMF with the dermatologists is limited. There is a real expert on DMF in the hospital in Zoetermeer.

Skilarence/DMF side effects are:
  1. Flushes... you get all red for a while, mostly 20-30 minutes. Totally harmless but very important as it is a signal that the drug is working.
  2. problems in the intestines, cramps may occur and/or tummy may get a bit unstable. No real problem, just perhaps inconvenient. After a while your tummy may get used to the drug just like with Jim.
  3. Lowering of the lymphocytes. Also a signal that the drug is working, there is a publication about that (have to search where). This is the only serious side-effect. !Watch it! your lymphocytes may not become too low. Certainly not lower than 0.5, but the derm will keep an eye on that (where are you treated? btw)
Experience shows that problem 2 is the reason that a number of people will stop with this treatment. That is because DMF is irritating for the intestines. But... you are in the Netherlands...so there is an alternative called Psorinovo. IF you have the intestine problem request to have Psorinovo prescribed, as this will dilute very slowly in the intestine and thus with most patients this will have much less problems over there. 

Some do have problems with side effect 1, first time is a bit scary, but it is really harmless and is an important signal that it works. 

Any questions? Don't hesitate to ask. There is a specific thread on DMF over here: [split] Dimethylfumarates and Psoriasis
And over here in this post RE: Bill's pure dimethylfumarate thread there is a short description of the most probable reason that DMF works against psoriasis. 

Cheers, 
Caroline
Wooley Offline
I'd be unstoppable if I could just get started!

100 + Member I Just Cant Stop !
Posts: 2,654
Threads: 7
Joined: Jul 2017
Gender: Female
Location: Spain
Treatment: Nothing currently
#8
Fri-21-08-2020, 16:24 PM
Hi Chloe Mary 

Welcome to Psoriasis Club!!!

You will find lots of useful advice and information on here - it's just a great group for help, advice and support.  There are lots of lovely people on here willing to assist, when/where they can.

The 'Off Topic' area is good too, to take your mind off things for a while from time to time.

Everything crossed that you can start Skilarence and that it works well for you.

All the best

Wooleyb  Thumb
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
#9
Fri-21-08-2020, 22:05 PM
Welcome Chloe,

I hope Skilarence gets your psoriasis under control. Caroline, Jim and I have responded well to DMF. Unlike most treatments, DMF seems to become more effective the longer you are on it. As Caroline suggested, the thing to watch out for is a low lymphocyte count, which is why you need regular blood tests.

Cheers
Kat Offline
Take my advice; I don't use it anyway.

100 + Member I Just Cant Stop !
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#10
Fri-21-08-2020, 22:22 PM
Welcome!

Skilarence has worked well for some of our group here and I hope you have good results as well. Congrats on the upcoming wedding and I hope you are all clear by then Smile

Kat
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