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'l make my own BG12!'

This is the title of an article in this weeks ~Pathways mag. Juergen Erhardt - biochemist in Germany - he has MS. So after lots of research he decided to make his own BG12. [Tecfidera- dimethylfumarate DMF] Which has been used for more than 20yrs in drugs to treat psoriasis. ln its pure formDMF can be bought for around £2 for 1kg - against around $50.000 the annual cost of Tecfidera in the US.

He prepares his own by putting the correct dose of DMF inside gelatine pill capsules and sealing them with the solvent Eudragit - both available online.

Juergen started on a low dose and has gradually increased over a month.

Juergens website:[edited]

Well, he is an idiot and so is anyone who follows his advice. BG12 or tecfidera is NOT pure Dimethyl Fumarate at all. It is then mixed in the appropriate quantities with three salts of ethylhydrogenfumarate (EHF). The adding of ethylhydrogenfumarate (EHF) is essential to reduce side effects, particularly gastrointestinal ones which can be pretty miserable.

Fumaderm was the company that originally found thius formulation and used it to treat psoriasis in germany. Biogen then bought the patent from them when they saw the potential for its benefit in MS. But I can guarantee you that the exact formulation of the drug is protected by Biogen whilst it is under patent.

To take Dimethyl Fumarate without the additives would be extremely foolish indeed. As the only person to date on the Boards who is actually ON Tecfidera I can assure you that the side effects can be quite severe enough without playing amateur chemist with the formulation.

Not to mention the essential need to be properly monitored before and after by a neurologist to make sure the blood work remains safe. The advice he gives regarding lymphocyte and leukocyte counts is actually WRONG. Any reduction in lymphocytes or leukocytes (ie the developement of lymphopaenia) is a reason to stop treatment.

It is dangerous and irresponsible to post this sort of thing in my opinion, Frances.

Crossly,

B

Hello,

Wow what a way to save money, would never have thought it would be so easy. If only i was a bio-chemist.

Thanks for the link very interesting.

Darren

Darren, read my reply. It isn’t that simple and what money would you be saving anyway? If you are smedically in need of it then you will get it through NICE and the NHS at no cost once it is available in the UK.

And if it isn’t available you would be a complete moron to start it off your own bat without the necessary blood tests being done before starting and access to proper follow up testing and care.

This is a powerful drug and taken wrongly could be horrible and dangerous.

Jeeeze…

B

Biogen were asked by MS-UK : Does Tecfidera contain only dimethyl fumerate[DMF] or is there anything else in it that would make it different from what Dr Erhardt describes on his website? Biogen said that Tecfidera is 100% dimethyl fumerate and contains no additional active substances. However, Tecfidera has a patented formula consisting of ‘‘enteric-coated, encapsulated micro-tablets’’ and that the production requires ‘‘special manufacturing equipment and fascilities’’.

So Tecfidera is 100% DMF - no additives.

What a great idea!

Manufacturing our own drugs, that will save the NHS a fortune and make those annoying trips to the docs unneccessary.

Must stop washing up my coffee cups and start harvesting the penicillin.

Hello,

In reply to Brog64, I know what you are saying but i would not call a bio-chem who can recreate BG-12 at home an “idiot”. I agree the dangers of taking powerful meds without supervision is a tad crazy. But when the chips are down and no available meds are working, how can i argue against someone trying to help them-selfs (ie cannabis, when all available pain meds don’t work).

The ms care i recieve is rubbish i have an “ms nurse” I cannot get hold of (2 years now) and the only drugs available are the main 4 injectables, they have refused me iv steroids or even a letter to the doc’s asking for them. My chance of getting hold of BG-12 when it gets the ok is zero.

This maybe my plan b.

Darren

Darren,

ln 31 yrs of SPMS - l have never seen a MS Nurse. But back to the DIY DRUGS - Yes, that is the title on top of the page of this article in Pathways. Which was MSRC - multiple sclerosis resource centre. Now MS-UK.

Now of course you are correct - the man is certainly no ‘idiot’. And l think if l was ‘bio-chemist’ and discovered l had MS - l think l would look at all and any way of helping myself.

This drug- which anyone can buy and has been used safely for 20yrs for the treatment of psoriasis. As to possible risks, he said that there is a very small risk that DMF could have some damaging effect on blood cells, liver and kidneys. So he has a blood test every six months. [As we have to do with many meds]

ln the year since he started taking DMF he has felt much better. His cognitive functions have improved and he can now go for much longer on his cross trainer. And he has started a new job helping PhD students.

ln the Pathways article [page34] is also a picture listing the kit needed for DIY DMF.

[Edited by moderator] ls the Dutch doctor he was in contact with who had years of experience with DMF in treating psoriasis. He prescribed Psorinovo which, like Tecfidera, is a slow release form of DMF. Which is what he started with at 30mg and 120mg tablets. Later he started making the DMF capsules himself as it was so much cheaper.

OK A few points. One I accept that I had got it the wrong way round and that BG12 is the one that is pure Dimethyl Fumarate. The psoriasis drug, Fumaderm, is the compounded one with the three extra salts so apologies for that.

However I still maintain that DIY drugs is just really, really dumb. I have been doing some research into the enteric coating of Tecfidera and the micro-ball tablets inside the casule and comparing it to the Eudragit mentioned in the link. And also into the actual pure form od DMF.

My main concern here is twofold… firstly that all though he has found a comparable enteric coating, his capsules are still filled with the DMF in its crystalline form. The very form that has been associated with severe skin reactions in the past. As soon as the enteric coating in his capsules dissolves in the duodenum he is releasing the whole 240mg of DMF stright into his intestine. I would be concerned about the long term impact of this on his gut health. And secondly to make your own capsules at home you are directly handling and inhaling the crystalline form of the drug. Potentially again very dangerous. Biogen created the micro-balls for a reason; to ensure a slower release into the gut than given by just the enteric coating. And handling a hazardous chemical is dangerous if you haven’t got the proper lab facilities and safeguards.

Darren, maybe a Plan B that would be slightly safer and even more effective than making your own would be to send the reply you wrote me as a letter to every MP in the UK and to get the MS Society on board with lobbying for fairer access to MS drugs in the UK. I am in Australia and can readily access Tecfidera. It isn’t the drug that needs changing but the UK’s systems of eligibility.

And to finish on a happier note. BG12 has just been approved by the EU

B

LOL No idea what happened in the fonts above

Hello again,

I did rally for the ms-lottery, and got intouch with my local mp and as it turns out a waste of time. At present iam very happy with avonex, but i do worry that my ms will worsen and i will be left with no other avenue to turn.

Its very scary but i can see why people would make the drug if it is so cheap and easy to create it.

I do know the last oral dmd to be given the go ahead by the EU was turned down by nice. So won’t keep my hopes up.

http://www.mssociety.org.uk/ms-news/2013/09/nice-minded-say-no-offering-new-ms-treatment-nhs

Thanks,

Darren

There are things where DIY is possible, but probably best to leave it to the experts, quite honestly. Good examples are, cutting one’s own hair, waxing one’s own bikini line and brewing one’s own Disease Modifying Drugs. Alison