Tecfidera vs Fumaderm

[jmcarlo83]

Not a problem Caroline, we here in the states are so used to abbreviating everything especially with the amount of text messages we send each other. I almost do not even realize i am doing it. Very excited to update you all with my progress.

[jmcarlo83]

Caroline i also wanted to ask you if fumaderm works so well and has been around for so long, why do you think it never made its way here to the states?

[mataribot]

It has do with the pharmaceutical companies... There are two different variants currently in trial for psoriasis and PsA.

[Caroline]

Caroline i also wanted to ask you if fumaderm works so well and has been around for so long, why do you think it never made its way here to the states?

Hello jmcarlo,

That is mainly because the development did not come from Big Pharma, but from a doctor (dr. Schweckendieck) that first was not understood by regular medics. Then a small drug production firm picked it up on the one side, that led to the production of Fumaderm in Germany and on the other side it was picked up in the Netherlands by doctor Kunst which led to the creation of Psorinovo.
Both products are already around for many years (30) in Germany and the Netherlands. Supported by smaller groups of doctors with a broader view on the patient than only its disease. The products are still hardly accepted by normal medicine as they did not pass the normal tryout protocol that belongs to new medicines. In the mean time all gathered knowhow and history should be enough to skip all these tests, but the regulators are stubborn and will not accept that. So the availability for e.g. Psorinovo is now only at one place in the Netherlands, Fumaderm is a bit more available, and you only get it if you really put the thumbscrews on your dermatologist, even while the guidelines of 2011 state that DMF is a first line medication for the treatment of psoriasis and PsA.
So you have to be a very active and knowledged patient.

Nobody in the States has picked this up in the past 30 years, maybe also because your FDA is very restrictive.
Recently Biogen created Tecfidera. They made their own production process (there is a description of it available) and did the required tests aiming on the MS market. They claim that this is why it is so expensive.
But..... I don't understand that as, reduced to a simple process:

1. DMF is available on the market for $160/kg, which is extremely cheap. Which means that the production process can never be really expensive.
   
2. Trials on patients cannot cost much money, you have to register 2 or more groups of patients, you can do that even with a simple excel, and you have to provide them with the medication, which is also not a complex process.
   
3. Then check and control these patients for quite a period. To me this also seems a limited and not complex procedure.
   
4. For the rest it should be filling out some forms
   

In the Netherlands we, again already for 30 years, know that DMF works good for Psoriasis, MS ánd even for Crohn's disease. But, except now for MS, this has never been picked up by the medical world. Which is of course very pitiful for the sufferers on these diseases.

It seems that Matari has info from another side.

It has do with the pharmaceutical companies... There are two different variants currently in trial for psoriasis and PsA.

Hi Matari,

Can you tell more on this ?
Which variants are being tried?
Is it all DMF-like?

Tell me more !  

Caroline

[Bill]

Hi jmcarlo,

I take raw DMF for p and psa. The use of DMF for ms is quite different as you are put on a standard dosage, whereas for p and psa the dosage is titrated by your dermatologist or rheumatologist until an effective dosage is found. During treatment you are monitored for effects on your liver and kidney function as well as your lymphocyte levels. If you respond well to treatment your specialist will gradually reduce the dosage of DMF until a minimum effective dosage is found. It may be of interest to you that the topical therapeutic calcipotriol has a synergistic effect when used in conjunction with DMF, so this might be an option for you if you are only taking DMF for ms.

If I could only offer you one piece of advice it would be to take your DMF with plenty of food, and on no account should you ever take the raw stuff with bananas.

Good luck.

Bill

[jiml]

Hi jmcarlo,

I take raw DMF for p and psa. The use of DMF for ms is quite different as you are put on a standard dosage, whereas for p and psa the dosage is titrated by your dermatologist or rheumatologist until an effective dosage is found. During treatment you are monitored for effects on your liver and kidney function as well as your lymphocyte levels. If you respond well to treatment your specialist will gradually reduce the dosage of DMF until a minimum effective dosage is found. It may be of interest to you that the topical therapeutic calcipotriol has a synergistic effect when used in conjunction with DMF, so this might be an option for you if you are only taking DMF for ms.

If I could only offer you one piece of advice it would be to take your DMF with plenty of food, and on no account should you ever take the raw stuff with bananas.

Good luck.

Bill

That's strange Bill I love bananas and they don't affect me in any way ... Interesting how it affects different people it must be the coating on tablet form that protect me

[Bill]

Hi Jim,

I've no idea why, but bananas and the raw stuff cause a very nasty tummy ache.

Cheers,

Bill

[jmcarlo83]

Good morning all, i just wanted to post an update with the tecfidera. About a month ago i met with a new derm that discussed my treatment with my neurologist. They both agreed to put me on cosentyx and copaxonr a drug for ms. I have been on cosentyx for two weeks now. It has worked really well. Many spots are clear. My legs are the most stubborn but getting better. I am hopeful once again and looking forward to summer. I want to thank all of you from the bottom of my heart for being so helpful and posting amazing comments with links and research. You all gave me hope in a time of deeo despair, and i thank you! Have a blessed day all.

[jiml]

Hi and thank you for the update it is greatly appreciated . I hope that the current treatment will continue to clear your psoriasis and give you remission from the MS
Again thanks for updating it will,be interesting to hear if the treatments continue to work I do hope so as its so good to get your life back from this unforgiving disease
Jim

[Caroline]

Good news jmcarlo. !!
Really great to hear.

Please do have regular checkups of your blood values. That is very important, specifically the lympho's.

Keep on going