Long term fumaderm...??

[Coiled_spring]

Hi
I've been on fumaderm for a year now and have reduced my dose from 2 tablets OD to 1 tablet once a day. We are trying every other day at the moment but it's starting to come back quite quickly.
Fumaderm has transformed me and my skin. It has had it's side effects but a very small price to pay and all manageable. I'm concerned what the long term implications will be, my dermatologist has said I can only be on it for 2 years and due to a lack of evidence for long term care I'm starting to feel a little anxious at it all returning again.
Has anyone been on it long term? Advise appreciated please
Charlotte x

[Kat]

I haven't been on fumaderm but wanted to say hello and welcome!

[Coiled_spring]

Hi Kat.
Thank you for the welcome x

[jiml]

Hi
I've been on fumaderm for a year now and have reduced my dose from 2 tablets OD to 1 tablet once a day. We are trying every other day at the moment but it's starting to come back quite quickly.
Fumaderm has transformed me and my skin. It has had it's side effects but a very small price to pay and all manageable. I'm concerned what the long term implications will be, my dermatologist has said I can only be on it for 2 years and due to a lack of evidence for long term care I'm starting to feel a little anxious at it all returning again.
Has anyone been on it long term? Advise appreciated please
Charlotte x

Hi Charlotte and to the club...... I am also on Fumaderm and I will come back to it in a bit
As I said thanks for posting it's nice to see another Fumaderm user on here you will find us all very friendly and pleased to answer any questions you can think of. We help each other through good and bad times,
Re Fumaderm it has been in use in Germany for well over 20 years with very good results I'm not good on the chemistry but I'm sure Caroline or someone else will be able to tell you why it is so safe.... Yes there are side effects I'm sure you have had the stomach cramps and hot flushes. But as long as your bloods, kidney and liver function are good there is no good reason to come off it. I have been on it about the same time as you and I have cut down to far and am now increasing my dose.
I will look out some links for you and post them later
But in my opinion DMF in the form of Fumaderm as a very safe and well proven drug. I will post more later
Thanks for joining and posting
Jim

[jiml]

If you look at this post and cut and paste the link into your browser there is some interesting reading about Fumaderm NHS and Fumaderm
And this snippet is from there

Observational studies following patients for up to 14 years do not indicate that Fumaderm® causes serious or permanent adverse effects [6-8,22,23,28,31,36]. There have been rare case reports of patients developing acute renal failure or proteinuria when given Fumaderm® [1,2,4,10]. Some studies report raised serum creatinine and/or the presence of urinary protein in up to 30% of patients; in the majority of patients the changes were transient and needed no intervention

It goes on to say about regular monitoring and any effects if monitored are reversible

You may want to read the whole article to put it in context

[Coiled_spring]

Thanks Jim, I will have a good read and take it to the dermatologist when I have my next Follow up.
So far my bloods have been reasonable. My HB has dropped a little,but not too much of a concern. My white blood cells can be a little erratic at times but holding there own at the moment. Hell if I have to have blood test every 2 months then so be it.
To have found a drug that works is a miracle in my opinion. It's been really interesting reading other people comments regarding side-effects. The only side-effect I have really suffered with is flushing, I find the more stressed I am or in a rush for the worse the flushing is.
With regards to the stomach cramps I have found that by taking tablets tablets at night does reduce this somewhat. However, I am only on 120 mg once-a-day/ every other.

[jiml]

That's great news you're keeping it down on such a low dose. I have reduced mine to far and have just increased to One in the morning and two at night, I rarely get cramps now but from time to time I do flush bright red

My lymphocyte levels dropped to below the norm which is why I reduced my dose, but I had other problems that could have contributed to the cause. They are back up to sensible levels again now

I would fight my dermatologist if they suggested coming off without a justifiable reason
You don't say your age and I don't blame you but if you are likely to get pregnant that is the time to stop and go back on if it flares after you finish breast feeding

[Coiled_spring]

I'm 31. I've got 2 small people and that's quite enough for me. They wouldn't let me start the medication until I had finished having a family and my husband had the snip. Suits me. X
I'm curious though when I started on the medication I was built up very slowly, for 3 months I was taking 60 mg OD then the dose increased to 120 mg OD then 240mg OD. I'm now back to 120 mg. I haven't experienced the side effects that badly considering. Having read other posts people individual doses are much higher. I do wonder if everyone else started small and then worked up to it and if the side effects may be related. .??

[jiml]

Hi again Charlotte
You were lucky with the side effects, as you say several people have had to give up because the side effects were so bad.
With Fumaderm you should be started on Fumaderm initial first which are I think 30 mg. increasing slowly to a maximum dose of 6 x 120mg tablets a day then as it works cut the dose gradually
My side effects were never bad but always noticeable.... I think the stomach cramps were the worst for me but they weren't every day and only lasted a few weeks, now as I said earlier I get the odd hot flush and no cramps

[Caroline]

Hi
I've been on fumaderm for a year now and have reduced my dose from 2 tablets OD to 1 tablet once a day. We are trying every other day at the moment but it's starting to come back quite quickly.
Fumaderm has transformed me and my skin. It has had it's side effects but a very small price to pay and all manageable. I'm concerned what the long term implications will be, my dermatologist has said I can only be on it for 2 years and due to a lack of evidence for long term care I'm starting to feel a little anxious at it all returning again.
Has anyone been on it long term? Advise appreciated please
Charlotte x

Hi Charlotte,
Just read through your posts.
You started really slowly, normal built up with Psorinovo (another medication with DMF over here in the Netherlands) is 30 mg a week, until it starts working.
Your dose is quite low.
I know people that are on more than 8x 120mg Psorinovo, which can be dosed higher and are already on that dose for many years without problems.
The only things that counts are:
- does your lymphocyte and other measurements stay on the safe side
- can you deal with the side effects, and with me that is mainly a bit unstable intestines. No stomach cramps as Psorinovo is enteric coated slow release.
- the flushes don't count, they are not severe, a bit funny and have positive side effects.
In the about 30 years that it is now used there are hardly any problems. Sometimes someone stops when it apparently does not work anymore, but that is occasional.

Cheers,
Caroline