Author Topic: FUMADERM - HOW MANY UK USERS ARE THERE?  (Read 2232 times)

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Offline MULLINDE

FUMADERM - HOW MANY UK USERS ARE THERE?
« on: February 08, 2011, 12:26:40 AM »
I know that it is not "licensed" in the UK, but I have been prescribed it and I know that there are others here who have also. But how many are we?

For me, I think that it could be the turning point of my life (well at least the last 12 years) what do others think. And why is it not more readily available in the UK.

Loads of responses please.......
I used to have more flakes than Kellogg's

Offline lee

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Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #1 on: February 12, 2011, 11:37:05 PM »
I,m on it and I know a few of the members on here are on it.
Not many posts to my name. But each reply is worth 20yrs of P experience.

Offline MULLINDE

Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #2 on: February 12, 2011, 11:46:28 PM »
Thanks Lee,

Well, that makes at least two of us. And then Imtthink that there is Frost and Luvvie, but how many more?
I used to have more flakes than Kellogg's

Offline Fi.

Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #3 on: February 13, 2011, 10:27:19 AM »
Me! :)



frost

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Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #4 on: February 13, 2011, 01:10:37 PM »
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Thanks Lee,

Well, that makes at least two of us. And then Imtthink that there is Frost and Luvvie, but how many more?
yup your right me and Liz are( altho I think she does it part time ;-))
also a guy or girl called Scam 

Offline Luvvi

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Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #5 on: February 13, 2011, 01:17:27 PM »
Lmao yeah part time for me.....I'm self meditating and it works for the mo thank God!  There aren't huge numbers of people on it, one because as you say, its not licensed in the UK, therefore there is no recorded data on its success or long term effects so that puts people off and secondly, because a lot of people cannot tolerate the side effects!  There will be less people on it, in the Glasgow area in future, as only those already using it will continue to have it prescribed. There is a considerable overspend in Fumeric Acid in our health board so I think this is the route they are going down!  It was certainly life changing for me, worth the side effects and the unknown qualities of the drug. I've read enough literature from the German studies to feel secure in using it and my own Dermatologist is very reassuring!
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Offline MULLINDE

Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #6 on: February 13, 2011, 05:31:00 PM »
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Me! :)




Hi Fi,

How long have you been on it and what have been the benefits?

Regards,

D
I used to have more flakes than Kellogg's

Offline MULLINDE

Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #7 on: February 13, 2011, 05:37:53 PM »
Hi Frost, Luvvie (Liz?),

Thanks for the information. I will try to contact Scam.

I see form older posts that Mariek was using it. I will also try to contact her.

Regards,

D.
I used to have more flakes than Kellogg's

Offline Fi.

Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #8 on: February 13, 2011, 07:17:27 PM »
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Me! :)




Hi Fi,

How long have you been on it and what have been the benefits?

Regards,

D


I've been on it since around last June after I had to come off Infliximab (and the worst flare up of p in 30 years).  It took a long time to notice any changes but most of the p cleared once I was on the max of 6 blues a day.  I still have p all over my body but only small plaques.

No problems really with the old tummy but I do get the odd nuclear reaction and the readibrek glow!

Offline MULLINDE

Re: FUMADERM - HOW MANY UK USERS ARE THERE?
« Reply #9 on: February 13, 2011, 07:37:11 PM »
Hi Fi,

Thanks for that.

I guess that we all know that we will have P for ever, but if it can be controlled do we really care?

I have been really lucky so far as I have had no side-effects except for some diarrhoea. But nothing really to complain about.

How have your bloods been? And has your Derm mentioned how long you can stay on Fumaderm?

Regards,

D

 
I used to have more flakes than Kellogg's