Fumaderm failure, advice on medication change

[ccarr06]

Hi guys!

I've been on fumaderm for the last 2 1/2 years, on 6x120 mg a day. As the title suggest, my fumaderm treatment seems to be failing. Long story short, I reduced my dosage from 6 tablets a day to 5 for a couple of months last year. I noticed my psoriasis went from 99% to about 80%. I then increase back to 6 a day. That was over a year ago, and since then my psoriasis has only gotten worse. I would say I'm about 30% covered at the moment, and it's not getting better even with using betnovate. Fumaderm had worked really well up until I had to reduce it.

I was curious if this has happened to other people, and what treatments they went on to next? My dermatologist has suggested I go on methotrexate and have not told me of any other options. I'd rather not go in methotrexate, so would like to hear from other people what other treatments they found effective.


Thanks in advance for any advice given

[jiml]

Hi CC what a shame it stopped working for you, but it goes to prove that it doesn't work for everyone ....as you know I have been able to keep clear on it long term, but if it's failing and you've tried the steroid creams with it, perhaps it is time to move on  
I would ask about biological treatments and see if they will move you towards one of those....if however they insist on Methotrexate, I would say give it a try it might work and you may tolerate it well, it was not good for me ...but dermatologists have a protocol to abide by, which means you have to have tried and failed some of these drugs, ....if you are uneasy about it after a couple of weeks tell them you can't stick the side effects ...then they should offer something else..
I'm sure others will tell of their experience, but with me it was Methotrexate first....which I failed on then moved to Fumaderm
Good luck in your next treatment
Jim  

[Caroline]

It seems that dayoc also has these same problems [Group Specific].

Very unfortunate that it is failing you, also with returning back to 6 again.
Also unfortunately you cannot increase anymore, such a pity that Psorinovo Is not available with you, as then you might increase higher and perhaps could control it. In the Netherlands several people are on a dosage of 8 pills. Doesn't help you of course, but I want to point out that DMF surely could stay working at a higher dose. Bill will probably support this opinion.

Personally I would try to avoid MTX. I think it is a terrible medication. So perhaps head for the bio's

[artemie]

hi CC, sorry to hear it's failing for you...
My experience in the Netherlands, I've been successful with 9x120, anything less was not enough. Is there a chance you can increase your dose without
 too many ill effects?  There is a Dutch forum with users of Psorinovo (DMF stomach resistant and slow release) where people were reporting the same as me, so 9x120 being enough and anything less gave them symptoms again. 

   ArteMie

[Fred]

Shame it's failing for you CC, but like Jim said what works for one may not work for another.

I've never tried Fumaderm so couldn't comment, but for me the only thing that has ever worked are the Bio's. But even then some have failed quickly and my last on Stelara lasted about 6 years.

It all about trial an error to find what works for you, If you're not happy going onto methotrexate you should tell them about your concerns. Some do ok on it and some have a bad experience (I'm in the latter group). If their protocol insist you try it, then you could try it and see how it goes, after a couple of months if you tell them you are always sick and feel like a zombie then you will probably be listed as a fail. hint hint.  

If you like a drink they are less likely to give you methotrexate, if you are thinking of trying for a baby they should not give you methotrexate.

You could try pushing for a bio and explain that you are not prepared to try methotrexate, depending on how you explain your reasons they may offer an alternative.

If you want to arm yourself with information about the Bio treatments this thread will help: Biological Treatments For Psoriasis

But at the end of the day remember it's your body they are playing with and you have the final say on what you are prepared to use.

[jiml]

hi CC, sorry to hear it's failing for you...
My experience in the Netherlands, I've been successful with 9x120, anything less was not enough. Is there a chance you can increase your dose without
 too many ill effects?  There is a Dutch forum with users of Psorinovo (DMF stomach resistant and slow release) where people were reporting the same as me, so 9x120 being enough and anything less gave them symptoms again. 

   ArteMie

No I'm afraid the maximum dose for Fumaderm is 6 tablets a day ArteMie....it's a shame it can't be increased but I think caroline has explained it's the additives in Fumaderm that restrict the size of dose that is safe

[artemie]

hi CC, sorry to hear it's failing for you...
My experience in the Netherlands, I've been successful with 9x120, anything less was not enough. Is there a chance you can increase your dose without
 too many ill effects?  There is a Dutch forum with users of Psorinovo (DMF stomach resistant and slow release) where people were reporting the same as me, so 9x120 being enough and anything less gave them symptoms again. 

   ArteMie

No I'm afraid the maximum dose for Fumaderm is 6 tablets a day ArteMie....it's a shame it can't be increased but I think caroline has explained it's the additives in Fumaderm that restrict the size of dose that is safe

hi Jim, ah ok that would explain it, didn't know that. My doctors didn't know that too, and only because I persisted, presenting 'evidence' from the Dutch forum, they gave me more and it worked (then). But Fumaderm is not Psorinovo, so thanks for filling me in on that, Jim. Also CC: I agree with Jim; if 30% coverage, its time to at least try to find a biological that suits you. Join me in this kinda scary voyage; next week I hear if my blood work is ok and then I can start...

[Caroline]

hi CC, sorry to hear it's failing for you...
My experience in the Netherlands, I've been successful with 9x120, anything less was not enough. Is there a chance you can increase your dose without
 too many ill effects?  There is a Dutch forum with users of Psorinovo (DMF stomach resistant and slow release) where people were reporting the same as me, so 9x120 being enough and anything less gave them symptoms again. 

   ArteMie

No I'm afraid the maximum dose for Fumaderm is 6 tablets a day ArteMie....it's a shame it can't be increased but I think caroline has explained it's the additives in Fumaderm that restrict the size of dose that is safe

hi Jim, ah ok that would explain it, didn't know that. My doctors didn't know that too, and only because I persisted, presenting 'evidence' from the Dutch forum, they gave me more and it worked (then). But Fumaderm is not Psorinovo, so thanks for filling me in on that, Jim. Also CC: I agree with Jim; if 30% coverage, its time to at least try to find a biological that suits you. Join me in this kinda scary voyage; next week I hear if my blood work is ok and then I can start...

Yes Indeed. Fumaderm has some salts added and some MEF (MonoEthylFumarate), which does hardly anything, an excess of that additives is bad specifically for your kidneys.  
It is an ancient result of the early days of DMF, where dr. Schweckendieck tried to protect his invention by adding some 'secret' ingredients. He did that because DMF is not patentable. Even while he knew it was useless, which was later on proved in e.g.  a promotion study of Mrs. Litjens.
Even in the Netherlands, still dermatologists try sometimes to give their patients this combined preparate.


Good luck !!  

[Bill]

Hi CC,

I found that 3*240mg daily DMF started losing efficacy about 6 months into treatment, so I increased to 3*360 mg daily for a while. This worked, but it was a tough regime for me. The short of it is that I found that I got better efficacy with larger doses. I also found that with larger doses I could take DMF less frequently. Currently I am on 800 mg doses, which seem to be optimal for me (I have tried larger and smaller doses). Be aware that my treatment is experimental and that I take raw DMF powder. I take a few grams of l-cysteine an hour before dosing and take my DMF with a large, bland meal. This regime works very well for me and I have noted no loss of efficacy with it.

Anyway, I hope you can get some effective treatment soon.

Cheers,

Bill