Bill's pure dimethylfumarate thread

[Bill]

I purchased a kilogram of 98% DMF from a chemical supplier in Shanghai at a cost of 160 USD delivered. Customs opened and sampled the package, but were unable to seize it as it is not a registered therapeutic nor is it subject to importation bans in Australia (or maybe they just stuffed up).

A word of caution though: It is a very strong drug with the potential for unpleasant side effects. And dont take it with bananas. I had a headache for 14 hours the last time I did that, and there wont be a next time.

Good luck,

Bill

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EDIT by Fred: I feel I should point out that Bill is using the non prescribed pure form of Dimethylfumarates and you would be wise to seek professional advice before trying this.

If you want to know more about Dimethylfumarates Caroline has explained here: Dimethylfumarates and Psoriasis

[Caroline]

I purchased a kilogram of 98% DMF from a chemical supplier in Shanghai at a cost of 160 USD delivered. Customs opened and sampled the package, but were unable to seize it as it is not a registered therapeutic nor is it subject to importation bans in Australia (or maybe they just stuffed up).

Hi Bill,

So you now have the pure DMF. Indeed there are no bans anywhere, as it is a normal substance which we all have in our bodies, and which is already so old that it cannot be patented by some moron.

A word of caution though: It is a very strong drug with the potential for unpleasant side effects. And dont take it with bananas. I had a headache for 14 hours the last time I did that, and there wont be a next time.

Good luck,

Bill

Here you are exactly pointing at the disadvantage of using DMF in its pure form. Already 40 years ago dr. Schweckendieck did a lot of research on this.
From this research it follows that it is absolutely not good to use DMF in it's pure form. You can get heavy stomach-aches and the pure concentration of it in your intestines are not nice for them.
This is also why Fumaderm has additives to prevent the problems in stomach and intestines.

Therefore in the Netherlands, dr. Kunst, developed Psorinovo. A Fumaric Acid ester, in the form of pills that are coated so they will pass your stomach without doing harm there, and in a slow release version so during the day/night it will gradually release the DMF. This appears to be a very nice approach as is revealed by research of dr. Kunst himself. So here the Netherlands we are already aware that dimethylfumarates work very well for most of psoriasis patients (not all !. I just read a mail from someone with whom it does not work).

Caroline

[Bill]

Hi Caroline,

I take my DMF with a meal and soy milk, and I think that the side effects are at the mild end of the spectrum, from what I have read of people taking formulations like fumaderm.

Maybe I am at the end of the Bell Curve, but I suspect that the side effects might be post absorption rather than pre absorption, so measures like enteric coatings and slow release formulations will only do so much.

In any event, Australian laws would prevent me from importing Fumaderm (not that I am complaining about something which is 2% of the cost), and if DMF is approved for MS therapy, I doubt if I will be able to import that either. Maybe I should stock up.

I Thank you for your informative posts. I have been taking DMF for 2 1/2 weeks now and I am finding it to be very effective. The side effects, apart from the headaches, have been annoying but bearable, and I have noticed that my sense of taste and smell have improved.

Kind regards,

Bill

[Bill]

An update.

I am now five weeks into treatment with DMF (240 mg three times daily with food and soy milk). I missed about four doses, mainly due to headaches. Side effects have abated, but the most irritating thing is that with my changed taste I find soy milk revolting (I have almost cut out wheat and dairy as both exacerbate my arthritis, so these things are not options for me at present). I did consider putting the DMF in enteric capsules prior to the side effects abating. On one occasion I chewed the crystals and held them in my mouth for about ten minutes before swallowing them and washing them down with soy milk. Two things followed: A nasty headache and a sore mouth, though the only thing I could see was a small red patch in the centre of my tongue. I guess this shows that DMF can be a local irritant and that the larger cyrstals eaten with food are absorbed more slowly.

The result has so far been good, with plaque area declining from over thirty percent to under twenty percent of body surface area. Overall plaque activity has declined by over ninety percent. I use creams on my shins, wrist, face and the back of my neck a few times weekly (previously daily to all plaques). I am also getting some full body sun exposure for twenty minutes twice a week, and I am swimming in the ocean at least weekly. The arthritis has been slower to respond, but I am no longer taking nsaids (previously ibuprofen 400mg twice daily with 500mg paracetamol).

From what I have read, the full effect of the DMF should be apparent in about another three to seven weeks. So far so good.

[Bill]

An update. I am eight weeks into treatment with DMF. Plaque coverage has declined from around 40% to below 15%. PASI has declined from 15-20 to ~1.6. The arthritis is improving, and while I am more comfortable on no analgesics than I was prior to DMF, I have decided to take 400 mg ibuprofen and 500 mg paracetamol at night. Side effects have reduced greatly, with only a couple of uncomfortable episodes weekly. The most resistant plaques have been on my shins and the back of my neck, but even these plaques are reducing. I am applying a tar based ointment to all remaining plaques as I feel it is beneficial. I continue to swim in the sea and get sun exposure weekly. I doubt that I will be able to clear my skin within another month as I suspect that I will still have at least 3% coverage, but I am hopeful that I may be clear within eight weeks.

[Fred]

An update. I am eight weeks into treatment with DMF. Plaque coverage has declined from around 40% to below 15%. PASI has declined from 15-20 to ~1.6. The arthritis is improving, and while I am more comfortable on no analgesics than I was prior to DMF, I have decided to take 400 mg ibuprofen and 500 mg paracetamol at night. Side effects have reduced greatly, with only a couple of uncomfortable episodes weekly. The most resistant plaques have been on my shins and the back of my neck, but even these plaques are reducing. I am applying a tar based ointment to all remaining plaques as I feel it is beneficial. I continue to swim in the sea and get sun exposure weekly. I doubt that I will be able to clear my skin within another month as I suspect that I will still have at least 3% coverage, but I am hopeful that I may be clear within eight weeks.

Thanks for taking the time to update this thread Bill
I wish a few more would come back and tell us how they are doing, as it's helpful to others.

[Bill]

No worries, Fred. And I would add that I no longer find the taste of soy milk nauseating. This is good as soy is the best milk substitute, but perplexing for me as well. I wonder whether the altered taste was a direct side effect of the drug, or a consequence of it giving me a clearer airway. If it is more a result of the latter, then that is a little worrying as it may mean that the drug is becoming less effective. I guess this is why objective measures like the PASI are so useful and potentially reassuring. I am sure I'm not the only one to find psoriasis a bit of an emotional roller-coaster.

[Caroline]

Interesting to read your progress Bill.

To me it seems you are about at the point where dr Schweckendieck was around 20 years ago.
It is clear that fumarates do the job. Your psoriasis is greatly diminishing.

But dr Schweckendieck finally had to give up because of the side effects. Hopefully you don't have to, too.
Over here in the Netherlands, dr Kunst invented a way to circumvent your problems.
I am using fumarates also, but do not have problems like you are describing. I have minimal intestine problems and an occasional flare up.
I am very interested in your progress, but know there is a solution.

Cheers,
Caroline

P.s. I am never emotional, always my cool self...........

[Bill]

Thanks, Caroline. I agree that the side effects I experienced were very unpleasant at the start of treatment and I would have welcomed some means of amelioration. But the side effects now are mild and quite bearable. Do you know what form and dosage of esters Dr Schweckendieck was taking? He may have been taking a higher dose and a combination with less efficacy and more toxicity.

It is interesting that you mention flareups as a side effect. Earlier this week, plaques on my shins, neck, and the top of my abdomen became a shade redder quite quickly. They have since faded. Is that what you meant by flareups?

[Caroline]

Thanks, Caroline. I agree that the side effects I experienced were very unpleasant at the start of treatment and I would have welcomed some means of amelioration. But the side effects now are mild and quite bearable. Do you know what form and dosage of esters Dr Schweckendieck was taking? He may have been taking a higher dose and a combination with less efficacy and more toxicity.

Hi Bill,
No I don't know exactly how dr Schweckendieck treated himself (and his wife), I guess it somewhere can be found. I could make a try on finding out, but that may take some time as I may have to ask for at some people.

It is interesting that you mention flareups as a side effect. Earlier this week, plaques on my shins, neck, and the top of my abdomen became a shade redder quite quickly. They have since faded. Is that what you meant by flareups?

No, that is not what I mean by a flareup, maybe I should name it differently. You can also call it a flush.
The effect is because of the DMF and it cannot be predicted. It starts at the top of my head, which begins to tickle en if thousands of little needles are stuck into it. But it is not painful. By then I gradually, from my head first, turn completely red. I think it has to do with the extents of the blood vains. It takes between 20-30 minutes for me to become completely red (and warm) and to cool down again and get my normal color.
Sometimes it stops earlier and it will only be on my head. This occurs occasionally, on average about one time a week. Luckily mostly in the nights, so I sleep through it.