Dimethylfumaric acid and Multiple Sclerosis - A personal experience report for an inexpensive treatment option
The purpose of
this website is to show on how MS can be treated
with Dimethylfumaric acid (DMF) for less than 100 Euro
per year.
In 2005 I was diagnosed with a relatively mild form of MS. At that time time I was already working since 15 years
in clinical research but the available pharmaceutical
treatment options were not very convincing for me and I thought
it's more useful to do some stress reduction and modifications in
my diet. Until 2011 there was no bigger problem but then I got
several times very uncomfortable epileptic cramps
caused by MS. Therefore I checked again the
literature and it was obvious that Dimethylfumaric
acid is probably the most promising medicine for
MS because of it's effectivness, good safety record and very low
cost when it is self made. The effectiveness can be seen in the articles of
the New England Journal of
Medicineand
the fact that Tecfidera the DMF preparation from Biogen is approved
for MS and successfully sold for around 50 000 USD/year in the US.
Tecfidera is pure DMF which is made stomach resistant by mixing it
with some chemicals. Instead of this the stomach resistancy can also be
made by
filling the DMF into stomach resistant capsules. DMF is not a
dangerous medicine and has almost no serious side
effects but to avoid any risk it is
useful to get a supervison by a
medical doctor who has experience with DMF and to start with a DMF
preparation from a pharmacy (besides Tecfidera it's also possible
to use for example the much less expensive Psorinovo which is
used for the treatment of Psoriasis and almost identical). If this
works without problem it's unproblematic to switch to the
self made capsules.
The picture
above shows the material on how to make the DMF capsules. DMF
(here from Merck), stomach resistant hard gelatine capsules (e.g. from
www.purecapsules.co.uk under the section 'Enteric coated capsules'), a
device for filling the capsules (here a Cap M Quik) and an inexpensive
balance which can be used to check the average weight in the
capsules.
The latter two which cost around 20 Euro can be easily found via
Google at Amazon or somewhere
else. The best size for the capsules is 2. These small capsules
can be
filled with approx. 200 mg DMF. With a daily dose of 480 mg
this would be around 17 capsules per week.
DMF
in pure form (mostly 99%) can be bought from various chemical companies
(VWR, Alfa-Aesar, Sigma-Aldrich) but depending on the country it might
need some research to find it and it can be necessary to
get help from someone who has experience in buying chemicals.Since it
is not possible to use DMF for killing or making bombs there are no
special regulations in buying DMF. There is almost no risk that
something unwanted is in the DMF preparation but if someone want to be
absolutely sure it's relatively easy to check this in a pharmaceutical
lab. There
is also a possibility to buy DMF in pharmaceutical quality from a
company in Holland (www.ofichem.com). The price is around 5 times
higher (1200 Euro/kg).
The best time to take
the capsules is in the morning
and the evening
some time (around 30 min) before the meals. This ensures that the
capsules are already in the small intestine before they get mixed with
the food and stay then for longer in the stomach. To prevent an
early opening of the capsule the cap should also be firmly pressed
on the bottom part and with the fingers any DMF leftover on the
side of the capsule removed to get the capsules tightly closed. With
some experience it takes approximately half an hour to make
the capsules for one month.
Usually
the DMF treatment is started with a low dose and then gradually
increased until the final dose of 480 mg/day is reached. A typical
scheme can be: Day 1: 1x30 mg, Day 2-4: 2x30 mg, Day 5-11: 3x30 mg,
Day 12-18: 3x60 mg, Day 19-25: 3x90 mg, Day 26-32: 3x120 mg and then
the final dose with 240 mg in the morning and evening). If the dose is
increased too fast or someone is more sensitive it might cause some
stomach pain or diarrhea but usually this disappears after some time or
when the dose is reduced. Another side effect is flushing (red color of
the skin and a bit itchy for some time). Most experience this more
as a sign that the DMF is working. There is only a
very small risk that DMF has a negative effect on the liver
or the kidney. Therefore it's useful to check in the
beginning regularly certain blood values (creatine for the
kidney, ALAT for the liver and total blood count for the
leucocytes). In the long term it's sufficient to do these checks every
half year (or more often when the blood assessment is convenient to do
e.g. directly in a clinical chemistry lab).
A more intelligent procedure which is used at the University
clinic in Bochum (this is the place where DMF was discovered for the
treatment of MS) is to use 5 mg DMF per kg body weight as the final
dose and to use the number of lymphocytes as sign that the therapy is
working (small reduction => increasing the DMF dose, too much
reduction => reduction of DMF dose). The absolute number of the
lymphocytes should never fall below 0.5 and the total number of
Leucocytes below 3.0. Since the fall of the leucocytes is not observed in
all who take DMF it's shouldn't taken too serious if there is
no reduction seen.
The following picture shows on how my leucocytes were reacting:
It
seems that 480 mg/day was too much for me. Therefore I reduced the
dosage to 240 mg/day but since this amount was not so
effective in the evaluation studies and my leucocytes were showing a
trend to go back to normal values I increased the DMF to 360 mg/day.
With this dose the leucocytes were decreasing again and I changed it
back to 240 mg/day (most recently to 200 mg/day since this corresponds
to one capsule/day). For testing I reduced the dosage further and the
lymphocytes seems to stable on a relatively low level. Maybe this very
low dosage is sufficient for me as long as my MS symptoms are not
getting worse.
I'm happy for any suggestions to improve this website!
erhardtj@gmx.de