Fumaderm continued success

[Mateychuk]

Hello All

Reading the most recent posts regarding Fumaderm and those trying the product for the first time, I encourage you to continue. Stomach cramping seems to be the most traumatic side effect but well worth the tolerance to achieve the benefits of Fumaderm. What do you take to alleviate the cramping? I used antacids.

As reported previously, I was a +30 year sufferer of Psoriasis, ran the gamut of controls available in Canada and USA except for biologic treatments, and today am totally free of the disease. Some days, it is unbelievable to think back on the severity of the affliction and have no Psoriasis today. I have some scarring, mostly slight discoloration of previous Psoriasis sites, but that's it.

I went through the step-up program, then step-down to a maintenance program of 1 x 120 mg per day for the past 2-1/2 years.

A peculiarity of the disease is that not all treatments work for all people, but my experience prompts me to advise you to try it or stick with it if you are already one the medication.

Good Luck and Hang in there!

William Mateychuk

[jiml]

Thank you William for the message today and permission to post this note telling me that you are still clear on Fumaderm that's almost 5 years on the maintenance dose of one tablet a day


Long may it continue William

[Kat]

Nice update and glad you are remaining clear. You're so right that not every treatment will work for everyone, but it's always so helpful to hear what has worked for people and how they maintain after getting clear.

[Mateychuk]

Hello All;

I continue to have great success with the use of Fumaderm for my Psoriasis, lesions now non-existent for several years. I have now reduced my maintenance dose to 1 x 120 mg every third day. However, I need to throw out a word of caution regarding Fumaderm.

The European Medicines Agency (EMA) has issued new advice for doctors and patients in order to minimise the risk of progressive multifocal leukoencephalopathy (PML) in patients treated with the multiple sclerosis medicine Tecfidera (dimethyl fumarate).

Some patients who are being treated with the psoriasis medicine Fumaderm, whose active substances include dimethyl fumarate, the active substance in Tecfidera, may also have persistently low levels of lymphocytes, and so may also be at higher risk of PML if they have been infected with JC virus. Therefore, related recommendations regarding the monitoring of white blood cell levels are being issued for these medicines, based on the evidence available from the case reports of PML received for Fumaderm.

Further information is available at LINK REMOVED


William Mateychuk

[Fred]

Hello All;

I continue to have great success with the use of Fumaderm for my Psoriasis, lesions now non-existent for several years. I have now reduced my maintenance dose to 1 x 120 mg every third day. However, I need to throw out a word of caution regarding Fumaderm.

The European Medicines Agency (EMA) has issued new advice for doctors and patients in order to minimise the risk of progressive multifocal leukoencephalopathy (PML) in patients treated with the multiple sclerosis medicine Tecfidera (dimethyl fumarate).

Some patients who are being treated with the psoriasis medicine Fumaderm, whose active substances include dimethyl fumarate, the active substance in Tecfidera, may also have persistently low levels of lymphocytes, and so may also be at higher risk of PML if they have been infected with JC virus. Therefore, related recommendations regarding the monitoring of white blood cell levels are being issued for these medicines, based on the evidence available from the case reports of PML received for Fumaderm.

Further information is available at LINK REMOVED


William Mateychuk

The DMF gang have been talking about it somewhere no doubt they will bring it back up.

But I have removed the link you posted as we have a No Link Policy.

Fred.

[Caroline]

Hi William,  (here is the DMF gang, not to be mixed up by the Stelara gang   )

This information is already available for at least thirty years or more.
Therefore the build up of using the medication being it Fumaderm or Psorinovo has to be very slow. The protocol for e.g. Psorinovo is very strong in that, what also holds for Fumaderm.

Tecfidera's protocol for building up is very fast, in a few weeks you go from 240 a day to the full dose. To my idea that is very much too fast.

Still there are in thirty years only a few cases of PML. They are arguably the result of not following the protocol or not stopping the medication if the lymphocytes get too low.  I personally have spoken on the phone with one of the victims where this was the case, she blamed the medication, but in fact did not follow the protocol.

It is very strange that because of a few isolated cases everyone seems to shout around that DMF would be dangerous. Well it is not more dangerous than any of the other medications that are available.  
But..... it is relatively cheap... My guess is that pharma likes selling more expensive medications far better.

In the Netherlands a scientific reseach on DMF is now coming very much closer where the leading dermatologists of the Netherlands are in involved. One of them is already combining the use of biologicals and DMF in one treatment.  
The possibilities of DMF seem unlimited. Psoriasis, MS, Crohns, Lupus, decubitus. Who knows what we are still going to find on this compound.

Your low dose should at least keep you far out of range of too low lympho's.  

Cheers,
Caroline

[jiml]

Hi William yes it's good to see you again (I'm more of the DMF gang)

Yes we have discussed tecfidera and the way it's being used on here before, and I agree that the rates of PML have gone up since its introduction, it's a shame they didn't go for a slow build up with the dose as the body doesn't have time to adjust and the lymphocytes take a hit and leaves the way open for this infection ...

As far as Fumaderm is concerned the incidence of PML is very small and as Caroline has said the known cases are probably due to poor monitoring

[Bill]

Yes, the risk is very small, with 4 PML cases. The precautions make DMF very safe. You could not do this with MTX because it could kill you with any dosing regime and has over a thousand PML cases chalked up to it. DMF for many does not have a rapid rebound of disease when cut, and as William shows, if you clear yourself with DMF there may be the prospect of maintaining yourself with a tiny dosage. What a fantastic result. Well done. Your story leaves me very hopeful of further progress.

[Mateychuk]

Hello All;

My success with Fumaderm continues, continuing to take 1 x 120 mg every fourth day as a maintenance dose.  I have contemplated dropping the medication entirely but being fearful of a relapse and having to start all over again, choose to continue with the small dose with the advice of my Dermatologist.  During the maintenance period, every once in a while I will get an itchy spot somewhere that may or may not be Psoriasis, which goes away as quickly as it appears.  Therefore, credible to say that I am 100% clear for several years now, after +35 years of Plaque Psoriasis to where I had more than 20% of my body covered with the horrible disease.  Fumaderm may not work for all, but definitely worth the trial effort and perseverance to achieve possible success as in my situation.  

William Mateychuk

[jiml]

Great to hear it's still doing it's magic William......I know what you mean about not daring to stop, for fear of a flare up ........I regard myself as clear but like you I get an odd spot to remind me I still have it....