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Do-it-yourself Multiple Sclerosis treatment

Dimethyl fumarate (DMF) can treat MS very well, but current treatment cost is 36.000$/year. Analogue DIY medication costs 300$/year.

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I was diagnosed with MS 4 years ago (2012). Since I live in Serbia my immediate treatment options were next to non-existing. I was put on a waiting list for interferons and told I'll get those in 3.5 years or so since our healthcare system is broke. Btw interferons don't help that much, disease progression goes down by only 20-30%.

In early 2013, new medication emerged in USA, Tecfidera (by Biogen idec), with very promising results, disease progression was down by 50% in average, even more for those who started using it early. One thing, DMF pills market price is 36.000$/year. Couldn't afford.

I started research on my own, red Tecfidera pills ingredients list, and found out that the only active ingredient in those is dimethyl fumarate (DMF), a chemical that could be obtained with relative ease. With some effort and external help I managed to create homemade Tecfidera analogue and I'm taking it ever since. My MS is now fine. MRI and blood tests confirm it.

Disclaimer: If you try to do this for yourself, I won't take any responsibility at all. I'm not a doctor and can't give trustworthy medical advice to anyone. It worked for me but I can't tell by any chance is it going to work for you as well.

Background: Dimethyl fumarate was used as psoriasis treatment for over 40 years in Germany and Netherlands and had been proven as clinically safe (with some precaution measures). Around 2006 it was noticed that patients who had MS alongside with psoriasis have huge MS benefits as well while taking DMF. Same year, clinical trials for MS started in USA, patents were granted by 2008, and DMF became available as MS treatment, but at 36.000$ price tag due to patent which expires in 2028.

Tecfidera drug (Dimethyl Fumarate) on RXList

Reality: All you need to produce DIY analogue of this medicaton is lab-grade DMF and empty gastro-resistant capsules, size 1. Dosage should be ~250mg/pill and that's pretty much done by filling size 1 capsuless full. Exact dosage isn't a big deal. Other ingredients present in market pills (talcum, crystalline celulose etc) are fillers and aren't mandatory, however they can be added if one wants. Original info came from this guy, dr Juergen Erhardt, who practically saved my life:

http://www.dmfms.de/

Effects: Noone knows all mechanisms exactly but one of the basic ones is lowering your lymphocyte counts, that is, selective immunosupression. Also, prevents oxidative nerve damage to some extent.

Applicable for: Relapsing-Remiting MS (RRMS). Don't try for other MS types, ever.

Dosage: 250mg pill, twice a day, after a meal.

Interactions with food, drinks: None.

Interactions with medications: Don't combine with any other immunosupressant drugs. You can destroy your immunity if you do so.

Safety: Control your blood counts, liver and kidney function monthly and reduce dosage or discontinue treatment if lymphocyte count goes below 0.5 billion/liter or if there are signs of kidney or liver disfunction. Chances for all these issues are very low, 1-2%.

Common side effects: Gastric issues in first month of treatment (they cease afterwards, dairy products help alleviate those), ocassional skin flushing after taking medication (harmless and short lasting). That's it. Impressive, isn't it? :D

My case: Here's my blog, it's in Serbian but Google translate will do.

Multiple Sclerosis and how to survive it in Serbia (in Serbian)

Basically, I'm taking my homemade pills for 3 years already and I have next to none MS symptoms. I have blood results and MRI results on my blog to confirm this.

MRI-After.png

MRI from December 2014, you can see that my condition is basically the same, which means there was no MS progression. Radiologist confiirms.

Portable Network Graphics (PNG) - 123.63 kB - 05/25/2016 at 09:52

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MRI-Before.png

MRI from October 2012, you can see white brain lessions which correspond to brain damage caused by MS.

Portable Network Graphics (PNG) - 369.57 kB - 05/25/2016 at 09:51

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History.xlsx

Blood counts over the course of my treatment, leucocytes total and lymphocytes total.

sheet - 44.25 kB - 05/25/2016 at 09:49

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  • Progressive MS linked to genetic mutation

    Srbodlak06/06/2016 at 15:15 0 comments

    This is the first time that a form of MS is directly linked to a ganetic mutation. This can pave a way for new treatment options in near future :)

    https://www.sciencedaily.com/releases/2016/06/160601132134.htm

  • Good news from few days ago...

    Srbodlak05/25/2016 at 10:17 0 comments

    Biogen idec is losing its patents on DMF in Europe so chances are that much cheaper Tecfidera analogue will be available from Netherlands (where all good things happen, if you know what I mean... :) )

    Details:

    is-biogen-inc-nasdaqbiib-and-forward-pharma-as-nasdaqfwp-dmf-battle-an-opportunity

  • Some additional therapy

    Srbodlak05/25/2016 at 10:14 0 comments

    I'm also experimenting with high doses of vitamin D (10.000 iu/day, maximum safe dose for an adult). Vitamin K2 also added as a precaution against calcium metabolic disorders. Some papers suggested that it could repair nerve damage to some extent, plus make MS milder in general. Doing this for 3 months already, so far so good, I can feel some improvement of symptoms that I have as a result of nerve damage originating before start of DMF treatment. Of course, can't tell for sure it this is related to vitamin D or not.

    Will publish updates on this. So far, I'm using myself as a lab rat and I discourage people from doing the same unless they are very sure what they're doing.

  • Tried to help others in Serbia and around, but...

    Srbodlak05/25/2016 at 10:09 0 comments

    Tough luck so far. Making even as simple DIY medication as this one requires some basics:

    1) At least some medical knowledge, how immune system works, what are autoimmune diseases, etc...

    2) Ability to read and understand some medical papers and clinical study results at least to some extent.

    3) Some guts. No doctor to blame. No mum to help. You're on your own.

    4) Being honest to yourself. Yes, I'm ill. No it won't go away on its own. Doctors are unable to help me because they're broke (at least in Serbia). I need to fight.

    95% of patients can't do these. It drove me to the edge of nervous breakdown back then. Ever since, if I see that one isn't capable of pulling this off, I tell them to go to their doctor and stop bothering me.

  • Project created :)

    Srbodlak05/25/2016 at 09:57 0 comments

    So, here I am... This project is ongoing for 3 years already, so far so good, I'm still alive and kicking, no significant side effects, very strong and physically active and I hope future brings the same.

View all 5 project logs

  • 1
    Step 1

    Gather basic ingredients:

    Lab-grade Dimethyl Fumarate (97% or more)

    Empty gastro-resistant (enteric) capsules, size 1

    Protective gear:

    Plastic foil or paper to cover working surface; Surgeon's mask or similar; Thin rubber gloves

    Optional:

    Capsule filler, very handy; Elecronic scales

  • 2
    Step 2

    Cover your table with plastic foil/paper or something; Put on gloves to avoid skin irritation; Put on surgeon mask (not mandatory but handy if you sneeze or something, you don't want DMF all over the room).

    DMF isn't toxic but irritates skin a lot. If it happens, wash with water and irritation will go away in 30 min or so. Use gloves.

  • 3
    Step 3

    Fill size 1 capsulles using capsule filler (quicker) or manually with piece of paper. Don't push DMF inside, just fill them gently till longer parts of capsule are full. When filled, close with shorter capsule parts and press gently. You should feel a click, and your capsule is sealed and ready to use. I usually make batches of 100 so it lasts for 50 days for me (taken twice daily).

View all 5 instructions

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Discussions

delta12 wrote 07/05/2017 at 03:55 point

Can anyone plz provide tips to get a hold of DMF?  In NA and a pm would be life saver... using for psoriasis treatment... 

  Are you sure? yes | no

Scrouch wrote 04/01/2018 at 02:47 point

Did you get hold of some DMF or are you taking something else? I have been on the 98% powder since December 2012 and it has been fantastic for me. I tried to get the stuff from a US chemical supplier initially, but they canceled my order and closed my account. So I ordered from China: No problems and a good product which came inside two weeks.

One point to make is that diy refers to supply of the drug only. You will require medical oversite and monitoring to keep you safe.

  Are you sure? yes | no

H wrote 07/22/2016 at 13:32 point

using a 97% pure compound for human usage seems extremely risky since you actually don´t know what the 3% are. For your information VWR sells it at 99% for roughly the same price. (https://us.vwr.com/store/product/7488934/dimethyl-fumarate-99)

  Are you sure? yes | no

Srbodlak wrote 07/22/2016 at 13:43 point

At the time I had no choice, and I was willing to risk. After 3.5 years of taking it I have no issues so I guess other 3% was house dust or something :) Thanks for info, I'll check it out :)

  Are you sure? yes | no

H wrote 07/22/2016 at 15:29 point

you got me with the house dust  ;) usually they are left overs from solvents and such.. but glad to hear you have no issues. Thats great news. But i would highly recommend you start using a higher purity DMF. Considering they are the same price, its a win-win situation. All the best. Further info with several suppliers : https://pubchem.ncbi.nlm.nih.gov/compound/Dimethyl_fumarate#section=Color 

  Are you sure? yes | no

Brett Smith wrote 06/09/2016 at 09:51 point

This is incredible! 

  Are you sure? yes | no

Srbodlak wrote 05/25/2016 at 09:58 point

Anyone out there suffering from MS? Share your experiences with me, especially those regarding DMF as a MS treatment.

  Are you sure? yes | no

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