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Hello from Cindy

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Hello from Cindy
cindy.tamblyn Offline
Member


Posts: 10
Threads: 1
Joined: Apr 2014
Gender: Female
Location: Dorset
Treatment: Fumaderm
#1
Fri-25-04-2014, 12:23 PM
Hi I am new to this forum. I have had my Psoriasis for around 8yrs it started after I had my hip operation. I have it severe on the soles of my feet, making some days impossible to walk. I have now been taking Fumaderm for 5 weeks dosage now 390mg a day, but not seeing any sign of improvement. Can someone give me some light at the end of the tunnel and advise me the more I increase my dosage by week, it will start to see an improvement.
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-25-04-2014, 12:24 PM (This post was last modified: Fri-25-04-2014, 14:14 PM by jiml.)
Hi Cindy
Welcome to the forum
We are getting several on now being treated with Fumaderm. Hopefully we can all learn from each other's experiences
You will find us a happy friendly bunch on here. Giving and taking support and advice,
When you are ready search all the posts on here and if you are brave venture into the off topic section Thumb
Thanks for taking the time to post Smile
cindy.tamblyn Offline Author
Member


Posts: 10
Threads: 1
Joined: Apr 2014
Gender: Female
Location: Dorset
Treatment: Fumaderm
#3
Fri-25-04-2014, 12:42 PM
Thanks finding the forum so useful, and just beginning to find my way around
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
#4
Fri-25-04-2014, 12:55 PM
(Fri-25-04-2014, 12:23 PM)cindy.tamblyn Wrote: Hi I am new to this forum. I have had my Psoriasis for around 8yrs it started after I had my hip operation. I have it severe on the soles of my feet, making some days impossible to walk. I have now been taking Fumaderm for 5 weeks dosage now 390mg a day, but not seeing any sign of improvement. Can someone give me some light at the end of the tunnel and advise me the more I increase my dosage by week, it will start to see an improvement.
hi again Cindy
Your dose is still fairly low that's just 3 tablets a day. You must build up slowly with Fumaderm then I am hopeful it will work as well for you as it did for me. I'm sure if Caroline spots this post she will give you some positive advice. I would just say stick with it it should work and when it gets clear in mine and most other users say it tends to stay clear with only very minor flares.
Try to stay positive I know it's difficult if you can't see an improvement but low stress and positivity in my opinion is the key to success Thumb
Jim
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,968
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#5
Fri-25-04-2014, 14:07 PM
Hello Cindy Welcome to Psoriasis Club.

I've moved your posts here to this thread to give you your own introduction as some members may not find you, I see Jim has already spoken to you about Fumaderm, & Caroline will have more to say.

You could also try using the search facility that is a available to members see here: Using The Search Facility Just type in Fumaderm and you will find lots of answers.

Regards.

Fred.
cindy.tamblyn Offline Author
Member


Posts: 10
Threads: 1
Joined: Apr 2014
Gender: Female
Location: Dorset
Treatment: Fumaderm
#6
Fri-25-04-2014, 14:22 PM
(Fri-25-04-2014, 12:55 PM)jiml Wrote:
(Fri-25-04-2014, 12:23 PM)cindy.tamblyn Wrote: Hi I am new to this forum. I have had my Psoriasis for around 8yrs it started after I had my hip operation. I have it severe on the soles of my feet, making some days impossible to walk. I have now been taking Fumaderm for 5 weeks dosage now 390mg a day, but not seeing any sign of improvement. Can someone give me some light at the end of the tunnel and advise me the more I increase my dosage by week, it will start to see an improvement.
hi again Cindy
Your dose is still fairly low that's just 3 tablets a day. You must build up slowly with Fumaderm then I am hopeful it will work as well for you as it did for me. I'm sure if Caroline spots this post she will give you some positive advice. I would just say stick with it it should work and when it gets clear in mine and most other users say it tends to stay clear with only very minor flares.
Try to stay positive I know it's difficult if you can't see an improvement but low stress and positivity in my opinion is the key to success Thumb
Jim
Thanks I will try and stay positive, It just hurts so much to walk and so much horrible pus coming out
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
#7
Fri-25-04-2014, 14:28 PM
(Fri-25-04-2014, 14:22 PM)cindy.tamblyn Wrote:
(Fri-25-04-2014, 12:55 PM)jiml Wrote:
(Fri-25-04-2014, 12:23 PM)cindy.tamblyn Wrote: Hi I am new to this forum. I have had my Psoriasis for around 8yrs it started after I had my hip operation. I have it severe on the soles of my feet, making some days impossible to walk. I have now been taking Fumaderm for 5 weeks dosage now 390mg a day, but not seeing any sign of improvement. Can someone give me some light at the end of the tunnel and advise me the more I increase my dosage by week, it will start to see an improvement.
hi again Cindy
Your dose is still fairly low that's just 3 tablets a day. You must build up slowly with Fumaderm then I am hopeful it will work as well for you as it did for me. I'm sure if Caroline spots this post she will give you some positive advice. I would just say stick with it it should work and when it gets clear in mine and most other users say it tends to stay clear with only very minor flares.
Try to stay positive I know it's difficult if you can't see an improvement but low stress and positivity in my opinion is the key to success Thumb
Jim
Thanks I will try and stay positive, It just hurts so much to walk and so much horrible pus coming out

It's difficult I never had it on my feet which must be painful. It's easy for me to say stick with it, but if you can I am sure you will reap long term benefit. As I have
Keep coming on here we have ways of cheering you up Big Grin 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
#8
Fri-25-04-2014, 14:31 PM
Hi Cindy,

When I started taking DMF I ramped up pretty quickly to 720mg/day. The side effects were horrible but I got a therapeutic effect faster. I can understand the wading in slowly approach though. It is a powerful drug that might work and with the potential for harm. So a slow dosage increase allows a minimum therapeutic dosage to be found. Much safer.

Cheers,

Bill
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,518
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
#9
Fri-25-04-2014, 19:46 PM
Hello Cindy,

Welcome to the forum and very nice to meet you. Big Grin Wave
I read my name already in above posts, so well, hi hi, that gives obligations Smile, but I am happy with that.
Nice that you are going with fumaderm, although I prefer to mention the working substance dimethylfumarates, as both Jim, Bill and I use it in different forms.
Jim uses it just alike you, Bill is using the real tough approach and I am using a specific slow release medication.

Unlike Bill, I am more for the gradual approach, do a slowly build up. Get used to the stuff and the effects.
It is important to realize that it is a slow working medication, so don't worry, it still may start working, maybe it is even working already without you noticing it. 70% of the users benefit from it, so there is a good chance that it works for you also.

I made a little graphic for you, it represents 3 phases of use, the building up phase, you continue increasing until it starts working.

[Image: 14006527802_d8603569f1_o.png]
Then after that there is the stabilization phase, which is as long as the building up phase, so when you are really stable (assuming that it works for you). Then again there is a phase in which you can try to reduce. Do that very slowly and controlled. Go down until the first signs appear again, and then go one step up again.

Maximum of using fumaderm is 6x120 mg.
There is a maximum, because of the additives that are in fumaderm.
Eg Bill's approach and mine do not have this limitation. I know people that use triple of the max fumaderm dose.

Be sure to have your blood levels on specifically lymphocytes checked regularly, they may not go too low.

Well that is the main line of what I have to tell.
Please keep us posted.

Btw, this is a nice forum, so do look around a bit.

Caroline. Wave
cindy.tamblyn Offline Author
Member


Posts: 10
Threads: 1
Joined: Apr 2014
Gender: Female
Location: Dorset
Treatment: Fumaderm
#10
Smile  Sat-26-04-2014, 10:01 AM
Thank you al so much for the feedback.
I totally do get it about starting and building up the dosage gradually.
I was on Cyclosporin (not sure of the spelling) for a year, and I had to come off it back in January as some of my blood readings had got to dangerous. So then I had to go 2mths to get everything out of my system before starting the fumaderm. I am having blood tests at the moment every 2 weeks.
I have also just starting drinking pure Aloa Vera 16ml morning and night to try and cleanse from within.
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