Should I come off Fumaderm?

[Ruth91]

Hi Fred

Thank you for the advice. Should I stay on fumaderm for life so? (well until I decide to have children). I just thought that because my psoriasis is clear that I should consider coming off the fumaderm (in hopes that it would stay clear). The thoughts of taking fumaderm forever is scary, and expensive :(

Ruth

[Fred]

Hi Fred

Thank you for the advice. Should I stay on fumaderm for life so? (well until I decide to have children). I just thought that because my psoriasis is clear that I should consider coming off the fumaderm (in hopes that it would stay clear). The thoughts of taking fumaderm forever is scary, and expensive :(

Ruth

As for being on it the rest of your life, it may stop working one day. Psoriasis treatements can do that, but I would say you will be taking something to control it for the rest of your life so better the devil you know. I don't know of anyone that has completely stopped all treatment and never had it come back, it's a matter of controling it, accepting you have it, and accepting you will have to take something for the rest of your life (be it light treatment, pills, creams, injection, etc)

I'm 100% with you on your thinking that as you are almost clear you may as well stop, but in my opinion it will come back and probably worse than it was.

As for expensive don't you have NHS in Ireland like the UK?

[Ruth91]

I didn't even consider the possibility of it not working some day, guess I should be happy that I am only on 1 tablet and it is still working for me. Yes we have a drug payment scheme here, I have to pay €144 a month to get my tablets, which ain't cheap when you are in college and working part-time.

It clearly makes sense to stay on it tho.
Thanks for all the help and advice

[Fred]

I didn't even consider the possibility of it not working some day, guess I should be happy that I am only on 1 tablet and it is still working for me. Yes we have a drug payment scheme here, I have to pay €144 a month to get my tablets, which ain't cheap when you are in college and working part-time.

It clearly makes sense to stay on it tho.
Thanks for all the help and advice

Yes unfortunatly it may stop working one day, however that's not to say it definatly will. Some people go on for ages with the same treatment, some learn to put up with it and just hide it and slap a bit of cream on. I was one of those people till I got it so bad I was covered head to toe, and ended up with Psoriatic arthritis and couldn't move. Modern day treatments have given me my life back, so for me yes they are worth staying on.

€144 that is expencive, I'm sorry I don't know the working of Ireland but it may be worth asking around if there is some more assistance for medical treatments as Psoriasis is a long term ilness. Here in France long term ilness gets free treatment if you get a certificate form your doctor every 5 years.

Please do keep coming back here and keep us updated as it could help others.

And if you do want to chill out I can reccomend the [Group Specific] for some chat or pure nonsence if it's from Jim.

[Ruth91]

I will be seeing my dermatologist in September and will I definitely come back here and tell you my decision then, to stay on it or not

This is a great forum and it's nice to be able to speak to other people who also have psoriasis.

If anyone ever has any questions about my experience of being on Fumaderm and how it worked for me just let me know I know its not for everyone but I am lucky that it has worked for me and I have managed to put up with the side effects. Over the years I have tried creams, diets, UV light and I even went to a healer...all of which didn't work. By just reading over what I have read I think I would mad to come off Fumaderm haha.

Thanks Again,

Ruth

[Caroline]

Hi Fred

Thank you for the advice. Should I stay on fumaderm for life so? (well until I decide to have children). I just thought that because my psoriasis is clear that I should consider coming off the fumaderm (in hopes that it would stay clear). The thoughts of taking fumaderm forever is scary, and expensive :(

Ruth

Hello Ruth,

I see that Fred is mowing grass away before my feet, though I still may be able to add some things to the discussion, of which I hope you will read them.
(basic reason that Fred is mowing grass away, is because since he moved he has a high speed line, before he had dial up, but now he is also speedy in posting, but all that is off-topic).
Fumaderm is, compared to other treatments, relatively cheap. Methotrexate (MTX) is cheaper, but very poisonous.
144 euro's a month is acceptable, i pay about 600 euro's for 600 tablets, good for about 2-3 months, but most of it is covered by the insurance.

You are only on 1 tablet per day, i think there is a possibility that you could get away with only a diet. You should check the relevant posts on our forum.
This because psoriasis is an immune disease and there are certain triggers that if you avoid them could prevent an outbreak.

Indeed as Fred states, it is not a new drug, it is already quite old. And there is a lot of experience with DMF which show that it is quite harmless AS LONG AS you keep an eye on your blood measurements (I know this is not the right way to say, but I am not english, so forgive me) on liver functions and lymphocytes. In the long experience of DMF, 30 years, there were two problems in the Netherlands over thousands of patients, both were basically not caused by the medication but due to lack of checking the status of the lymphocytes.

The rate of success with DMF at psoriasis is around 70%, apparently you belong to one of them and that is lucky.

Fumarates are a body owned substance, that is the power of it, they control a part of the energy cycle in your cells. DMF's like fumaderm, power up a broken part of this energy cycle and have an immunosuppressive function. This takes care of the problem in the immune system that psoriasis basically is. It has nothing to do with your skin, psoriasis gives only an expression on you skin or joints if you have PsA.

I know a girl/woman who has used DMF since her 16th and she is now around her thirties. She uses an x-fold more than you are using now and she is still going strong.

IF your are going for children, than stop the use of DMF. Not that there is an indication for it, but just because we don't know, you better be on the safe side.

Looking at what is happening, DMF is on the edge of making a large step in use as it appears to have a broader effect on more auto-immune diseases as psoriasis.
It is know to be able to stop MS and Crohns disease, and seems to have positive effects on meunieres, because of the flushes.

I am curious about your personal experiences with DMF.

cheers,
Caroline

[tanlou]

Hi and hello - im new on this group also - and believe me they are a great bunch - Fumaderm was not good for me but we are all different - if it is working for you stick with it - even 1 tablet a day - I hope you have good results x

[Ruth91]

Hi Caroline,
Thank you for the info and advice on fumaderm Private message me and ask me whatever you want about my experiences of being on fumaderm, if you want

Hi Tanlou,
Sorry to hear that fumaderm didn't work for you, I hope you find something that works for you.

Thanks again guys

[jiml]

Hi Ruth you can read of my experience of Fumaderm here
Click here Fumaderm and hormone injections

Ignore the bits about cancer that's past history but the rest may be interesting
Jim

[Bill]

Hi Ruth,

I went cold turkey and had an aggravation of my psoriasis over four weeks. It is not a particularly fun drug, but it is extremely effective for some.

There is a German biochemist by the name of Juergen Erhardt who makes his own DMF capsules for around 100 Euros a year, and I think that he takes about 480 mg per day. He has a web page outlining his method. I have emailed him and found him approachable and helpful. I take the raw stuff and it costs me a bit under 25 USD per year.

Cheers,

Bill