Should I come off Fumaderm?

[Ruth91]

Hey Guys, I'm new to this forum so hopefully I'm doing this the right way

I have had Psoriasis (covered head to toe in it) since I was a child, I tried EVERYTHING (creams, diets, UV light etc) which didn't work, and then I found Fumaderm

I have been on fumaderm for over 2 years now and I am down to 1 tablet and I am pretty much clear, except for the tiniest bit on my scalp. I can bare the side effects such as the flushing, but I am constantly tired which I believe is down to the Fumaderm. I will be seeing my dermatologist in September but before I speak to him I wanted to see if anyone has any experiences of coming off fumaderm and what happened.? I feel its time to come off it but I really don't know if its a good idea.
Any help would be very much appreciated, Ruth

[jiml]

Hi Ruth
Firstly I'm pleased to a fellow Fumaderm success to the forum.
I have also been on Fumaderm for around two years. There is another guy on here has been taking it for years and is on one tablet a day, he calls it a maintenance dose,
What is your reason to want to come off if it's working so well?
I have cut down to two tablets a day and am still virtually clear like yourself.
As for tiredness, I have just the opposite I'm up all hours and then up early in the morning full of energy, so it may not be the Fumaderm causing the tiredness.
In my opinion Ruth and it is just an opinion I would be reluctant to come off for fear of a big flare, it may not happen but I dare not take the chance
People in Germany and Europe have been on it years and as long as you are monitored and your liver and kidney function is good and your lymphocyte levels are around normal there should be no reason to stop

I'm glad you found this place as it is a great place to come and air your worries with people who understand, we are a small friendly group of people always ready to talk about virtually anything, but mainly psoriasis.
Come back often it's a great safe environment and there will be lots of other advice for you I'm sure
Jim .

[Caroline]

Hi Ruth,

Welcome to the forum. I hope you will enjoy yourself over here.

Only one tablet of Fumaderm !! That's great. So little.

On this forum, Jim is using fumaderm also and Bill and I are also on dimethylfumarates, which is the working substance of Fumaderm.

As far as I know neither of us does have any problems with tiredness. On the contrary, the effect of DMF should be that your metabolic system is a bit speeded up, so you should have enough energy.

My guess is that something else may be causing it. My advice is...
1) go to your GP first, before going to the dermatologist
2) ask Jim if he has trouble
3) read carefully the information with your tablets

I am on 5 tablets of psorinovo and I have a constantly available energy.

Caroline

[jiml]

Hi again Ruth
Just found the guy one one tablet a day click to read what he said and I believe he is maintaining that to this day
Just click the link below
RE: Fumaderm

[Ruth91]

Hi Jim,

Thank you for the welcome

I understand where you are coming from, like I have found a solution and now I'm talking about coming off it. I guess I'm afraid of the effects that taking fumaderm could have on me in the future. I'm 23 years old and this is a relatively new drug so who is not to say that it could create problems down along the line. I get my bloods done every 3 months, but it could have other side effects that we are not aware of yet. I also worry about the chance of a big flare happening too if I come off it.

When I speak to my family about coming off it they tell me I should, but that's only because they hate me being on it. They don't have psoriasis so they don't fully understand how it affects me. Some people can deal with it better than others. When I had my psoriasis I was in a very bad place, It had a huge effect on me. Staying on Fumaderm might be the better opinion, but the thoughts of taking such a strong drug for the rest of my life scares me, thats why I am wondering if a break from it now would be a good idea.

Ruth

[Ruth91]

Hi Caroline,

Thanks for the welcome

I have been to my GP several times about my tiredness and she can not see what the problem is, so I guess I am blaming Fumaderm because I have no other idea of what could be causing it.

I suppose being on one tablet really isn't bad incomparsion but I just wonder if 1 tablet is keeping me clear then could being on No tablets work too?

Ruth

[jiml]

Hi Jim,

Thank you for the welcome

I understand where you are coming from, like I have found a solution and now I'm talking about coming off it. I guess I'm afraid of the effects that taking fumaderm could have on me in the future. I'm 23 years old and this is a relatively new drug so who is not to say that it could create problems down along the line. I get my bloods done every 3 months, but it could have other side effects that we are not aware of yet. I also worry about the chance of a big flare happening too if I come off it.

When I speak to my family about coming off it they tell me I should, but that's only because they hate me being on it. They don't have psoriasis so they don't fully understand how it affects me. Some people can deal with it better than others. When I had my psoriasis I was in a very bad place, It had a huge effect on me. Staying on Fumaderm might be the better opinion, but the thoughts of taking such a strong drug for the rest of my life scares me, thats why I am wondering if a break from it now would be a good idea.

Ruth

I'm sure Caroline will give you better advice regarding the long term use of DMF but as far as I know there are no long term effects such as you would get from say methotrexate
Fumaderm isn't a new drug it's been used in Germany for over 20 years and with virtually no problems. As long as you are monitored and your levels stay good there is no reason to stop.
In my opinion. I know you are young and have to carry the disease with you for life but I would stay on, there are tremendous advances in the study of psoriasis and I'm sure that certainly in your lifetime if not in mine there will be one safe drug fits all.... In the meantime I would grin and bear it, as I'm sure your one tablet is not the cause of your tiredness
But it is the reason you are clear
Jim

[Ruth91]

Thanks Jim, your advice has made me feel more confident about continuing with the drug. I will speak to my dermatologist in September to get his opinion, but staying on it seems like the best option at the moment I guess.

Thanks again,
Ruth

[jiml]

Thanks Jim, your advice has made me feel more confident about continuing with the drug. I will speak to my dermatologist in September to get his opinion, but staying on it seems like the best option at the moment I guess.

Thanks again,
Ruth

Well I know I'm the other end of the age range but if Fumaderm had been offered to me in my teenage years I would have jumped at the chance, it has given you and me our lives back, and I doubt you will have long term problems from taking it more likely problems if you don't but again that's a personal opinion
Good luck and keep us updated it's good to have you here
Jim

[Fred]

Hello Ruth to Psoriasis Club.

My opinions

#1 It's not a new drug, it's been around for 30 + years and has little side effects.
#2 If you stop taking it, you could cause a flare up and end up with worse than what you have had before.
#3 The tiredness isn't down to Fumaderm it's down to you having psoriasis. See these threads: Tiredness and psoriasis and Does psoriasis make you tired?
#4 It's ok your family hating you being on it and recomending you stop, but it's your body and they don't/can't understand what it's like living with psoriasis.
#5 There are other treatments but they all have some sort of side effect, but trust me if you stop taking any form of treatment alltogether you could end up in a hell of a mess.

It's just my opinion, but I would say if 1 Fumaderm pill is working for you now, I would stick with it enjoy your life and wait and see.

Regards.

Fred.