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.
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!