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Hi everyone
MaDbEaR Offline
Member


Posts: 17
Threads: 2
Joined: May 2015
Gender: Female
Location: Leicestershire
Psoriasis Score: was 15 now 47!!
Treatment: Ciclosporin but starting fumaderm soon
#1
Smile  Tue-05-05-2015, 13:13 PM
Hi guys,

I've had P since I was 15, and I've just turned 30. I'm currently on ciclosporin but my dose is being lowered and I'm being switched on to fumaderm after being told by my dentist that I needed to stop the ciclo. I've been on methotrexate, but that turned me into a grumpy lazy sod, and being a single mum I couldn't carry on like that! I've had 3 lots of light treatment, had a couple of years clear after my first lot but second and third attempts just resulted in quite bad burns so no more of that. I try and avoid steroid creams as I had severe eczema as a kid so went through a lot of them and as a result I seem to have become resistant to them.

My son is great and helps me put my hydromol on if I've had a bad skin day. He has seen me suffer so much with my skin and I'm looking forward to the day my legs are clear so I can take him swimming. I haven't been swimming with him for 5 years, he is only 5 1/2!!
My skin is under control at the minute, but I am feeling a bit apprehensive about going onto fumaderm. Ciclo worked for me in the beginning, then I had a "controlled flare" (only the bits that were already there got worse and one or two bits came back) over winter so the derm upped my dose and I was seeing results less than a week after going up to 175mg then my dentist advised that my gums were getting really bad and I should come off them. I'm hoping that my tablets turn up soon so that I can start them before I worry too much more and cause a stress flare up!!
Fred Online
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,925
Threads: 3,887
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#2
Tue-05-05-2015, 13:36 PM
Hello MaDbEaR  Welcome to Psoriasis Club.

You will soon get other replies from others about Fumaderm, and some will tell you about Dimethylfumarates (DMF) which is what Fumaderms main ingredient is.

So I will leave you to them, also if you use the Search Facility will give you a load of information about Fumaderm. Using The Search Facility

But if it helps by what I have seen from our members using it, most seem to tolerate it well and get good results from it too.

Good luck and please don't hesitate to start a thread in Prescribed Treatments For Psoriasis once you start, your information could help others and it's a good way of monitoring your progress.

Regards.

Fred.
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
#3
Tue-05-05-2015, 13:56 PM
Hi madbear and a great  Welcome to the club, I see Fred has already posted, you will find this a very informative and supportive site given to us by Fred to discuss our psoriasis and treatments, it is a very friendly place and I think it is unique in that it is free from any cyber nasties, spammers or advertising , just a group of psoriasis sufferers exchanging views
Thank you for your comprehensive introduction you have certainly been through your fair share of treatments.
This could be your lucky time though being offered fumaderm is a very positive thing....ok it's not the fastest working drug but it is tried and tested and amongst the safest in my opinion ( the key to safety with all these drugs is monitoring ) as long as you are monitored and can tolerate the side effects at the start you should be ok. It works for around 70% of people and I think the others don't always stop because of the efficacy of the drug, but because the side effects are to severe for them to carry on. It has been used in Europe (Germany)for well over 30 years with very few problems
If you experience bad side effects come and talk about them we always have suggestions to lessen them.
Embrace this chance, it's a great drug I have been on it well over three years and it has totally changed my life for the better , and I just get mild face flushing now as a side effect it's so small now that I barely notice it
Look forward to hearing how you get on taking it and this is a great place for you to chronicle your journey so you can look back and see what works and what others have advised
Thanks again for posting Thumb
Jim
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,501
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
#4
Tue-05-05-2015, 16:03 PM
Doh Oh no! Now Jim has told you all the secrets of Fumaderm.

But there is a lot to tell about DMF, you can look in the thread Dimethylfumarates and Psoriasis.
DMF is the working substance.

Few basic rules:
- don't worry, it can take long before it works
- please slowly build up, goes better with the side effects and the effect on your lymphocytes
- have lymphos regularly checked, they are most important
- do come around here, even start your own thread on your progress. We are here to assist you and give advice and listen to you.

Fumaderm is being used in Germany already for 30 years, in the Netherlands we have another form of this medication which has less side effects already for at least 20 years. I am already for I think ten years on that medication and still going fine.

Any questions, just ask.

And of course welcome to psoriasisclub.

Caroline
bav101 Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 919
Threads: 7
Joined: Apr 2015
Gender: Male
Location: Bristol
Treatment: Tremfya
#5
Tue-05-05-2015, 17:04 PM
Welcome!

I'm Bav i like walks in the park, picnics and going to the Cinema, vodka and all things sci fi... wait.. screw that i just like cookies...

Ok seriously, this is one of the best places to be for information on P, these guys seriously know there there stuff, so feel free to kick back relax and join in the mayhem and enjoy yourself. Smile
Kat Offline
Take my advice; I don't use it anyway.
*
Forum Helper
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#6
Tue-05-05-2015, 18:11 PM
Welcome! You'll find lots of information here and we have some members on Fumaderm. This is a great place to talk about treatments, good days, bad days or just chat. The people here are very friendly and willing to help. Smile
MaDbEaR Offline Author
Member


Posts: 17
Threads: 2
Joined: May 2015
Gender: Female
Location: Leicestershire
Psoriasis Score: was 15 now 47!!
Treatment: Ciclosporin but starting fumaderm soon
#7
Tue-05-05-2015, 20:50 PM
Thank you for the welcome, I am a member of some p groups on fb but they are no where near as friendly as you guys ? I have had a phone call from the hospital since my first post and my fumaderm tablets have arrived I am going to collect them after I collect my son from school tomorrow so will be taking my first dose after dinner. I have read on the other posts that yoghurt is good to have when taking them and to avoid bananas (easy as I can't stand them!), is there anything else that I need to avoid?

Thanks again for the welcome ?
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,104
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#8
Tue-05-05-2015, 20:59 PM
Hi there nice to meet you! I hope you think about swimming even with P, it's a brave step but hey, people need to get used to seeing P just like they get used to any other things out of the ordinary. I was worried about it but I don't even think about it now.
Fred Online
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,925
Threads: 3,887
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#9
Tue-05-05-2015, 21:07 PM
(Tue-05-05-2015, 20:50 PM)MaDbEaR Wrote: I am a member of some p groups on fb but they are no where near as friendly as you guys

I can't help with the question, others will answer.

But I wanted to say thank you for the kind words, we do work very hard to keep Psoriasis Club friendly and to get feedback like that from a new member is nice to hear.  Smile
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
#10
Tue-05-05-2015, 21:15 PM
@ turnedlight
That's very brave I never went swimming until I was clear I wish I had not bothered what people thought  Thumb

@madbear
Glad you will have your tablets tomorrow they should be the fumaderm initial which are 30 mg and you should start on one a day
Always take with a meal and plenty of fluid which should minimise the stomach cramps, which you probably will get, but they should be short lived
If you have any questions just shout and someone will try to help
Good luck and don't worry there should be no nasty surprises  Thumb
Jim
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