Bill's pure dimethylfumarate thread

[Bill]

It has been a long while so I will give an update. The short of it is that I am taking twice daily DMF doses of 360 mg with food and suffer only a mildly upset stomach as a side effect. This dosage seems to be far more effective than the three 240 mg doses I was taking at the start. My PASI is now around 1, and still seems to be improving, albeit very slowly. My appreciation of the disease and treatment has also changed: I had intended to use the DMF in bursts and switch to topical therapies when the plaques had reduced and become inactive, but such an approach is flawed as psoriasis in a systemic illness. I found this out the hard way about a year ago when I ceased taking DMF altogether. Despite the topical treatment, the plaques returned with a vengeance, leaving me 15% covered with angry red plaques. I then upped the dose to three daily doses of 360 mg. This was effective but hard going so I skipped a few doses. The skipped doses in turn led to the realisation that two doses of 360 mg was controlling the disease and was far more effective than three daily doses of 240 mg. I take the DMF on week days and have a break from treatment on weekends.

On a regulatory note, DMF is now classified as a pharmaceutical in Australia for treating multiple sclerosis. Were I to buy it unsubsidised here it would cost me $40,000 per year, compared with the $40 per year it cost me for the DMF I bought from Shanghai. So I will be contacting the the local authority for permission to import more DMF. Fortunately the kilo I bought will last me at least until late in 2016, but as it is working so well I do not want to face a disrupted supply.

[jiml]

Great update Bill
I follow with great interest your progression and I am impressed that you have managed to find a dose that deals with your psoriasis with minimal side effects, I am surprised how cheap the raw material is, compared with the cost of Fumaderm (basically the same thing apart from a few additives )

I take my 2x120mg Fumaderm tablets twice a day after food and flushed down with plenty of water 7 days a week. This has had remarkable effect on reducing my psoriasis, and it is great to read of your success with DMF in its raw state,
This should give others who can't get it as a prescribed treatment the courage to maybe follow your lead.



Does you dermatologist know you are self prescribing ?
If yes what is their opinion, if they have one

[Caroline]

Ii's a bit strange that Bill can handle pure DMF. Today I learned, by means of a visit to a pharmacy that the basic compound is cheap (but getting more expensive because of shortage on the market [how would that be possible]) but quite aggressive.

The production of e.g. Psorinovo and probably also Fumaderm, is done in a super clean room and by machines. The humans that are involved walk in kind of a space suit with own air supply.
The costs of this production for me explain the costs, which is still 1/40 of the price (not the costs) of the treatment against MS.

[Bill]

Hi Jim,
I'm happy that you are treating your disease successfully. DMF as far as I am aware is not a therapy for psoriasis in Australia, so I sourced it myself and self medicate. The approved therapies in Australia are methotrexate and cephalosporins. I didn't want them, but for all I know they might have been more effective therapies for me.

Hi Caroline,

Yes I take 98% pure DMF (as far as I know that is what it is) and yes, the side effect I am aware of is a mildly upset tummy. Maybe you overrate its aggressiveness? Yes, DMF will cause contact ulceration of the mucosa, but by taking it with food this seems to be greatly ameliorated. If it weren't I would put it in capsules, but there is no need.

I am glad the commercial preparations are super clean, though I would point out that Fumaderm has only one active ingredient as well as fumaric acid esters which have no benefit. I dont see much sense in taking a substance with no efficacy, no matter how clean it is, so Psorinovo would be my choice if were to take a commercial preparation . Also, what contaminants need I worry about? DMF is used as a mold suppressant and wouldn't be terribly enticing to bacterial pathogens. The bag I have looks much like a bag of sugar or salt and it looks pretty clean. I guess I could pay over 40 times as much for a cleaner product, but the advantage of doing so eludes me.

Cheers,

Bill

[Caroline]

Maybe I overrate it bill, but according to my sources, which are both the results of dr. Schweckendieck himself, the person that found the effect of DMF on psoriasis. He had to stop using it.
And the pharmacist I spoke, where Psorinovo is produced, tell the same.

So it is great that you apparently can deal with it.

Don't guess that MTX and cyclosporine should be better for you.
- it is already proven in research that at least for PsA, MTX does nothing.
- but MTX and cyclosporine, are quite more bad for your health
- my personal experience with MTX is devastating bad.
- Fred either is not fond of MTX

Indeed Fumaderm has only one active substance, the rest is basically obsolete, sorry Jim .
Psorinovo is slow release, that is for most users an additional point as it does not or less disturb your intestines.
Your approach is however much cheaper, a factor of 30 to 40.

The interesting thing however is that DMF is, at least in the Netherlands, is gaining speed and coming more into the view of the dermatologists, and might slowly grow as being the first approach to take in case of psoriasis. There are already dermatologists that follow this road.

[Bill]

Thanks Caroline,

I guess we all have our own response to the drug, but there are still plenty of parameters that can be controlled. For example, what mix of fumaric acid esters was Dr Schweckendieck taking? (With a mixture of esters you would think that he would have much greater side effects for the same pharmacological response.) How often was he taking them and what was he taking them with? What was the crystal size of the esters? All these parameters may matter. For myself, the best way to ameliorate symptoms is to have the DMF with a meal. This way the DMF is spread out so I wont get concentrated areas of contact ulceration in my gut. The 80 cent a week cost is good, equating to about five years supply for the cost of two months supply of Fumaderm, although I have not checked the price of DMF since late 2012.

Cheers,

Bill

[Bill]

A brief update. I have changed my DMF intake to three weekly 600 mg doses as I wish to conserve my supply and test the idea that undivided doses may be more effective. While it is still too early to be certain, my psa is significantly improved and my skin is marginally worse, although the PASI is still a bit under one. I am hopeful that my worsening skin is just a manifestation of an oscillating disease and will improve soon.

My quest to obtain permission to import DMF has struck a dead end. A pity and somewhat surprising as it is an industrial chemical with a variety of applications such as paint and adhesive manufacture. Fortunately it is very simple to make a high purity product, much easier than croissants or even bagels. Not the way I wanted to go, but I wont have to worry about setting up a drug lab just yet as I still have over six years supply left.

Cheers,

Bill

[jiml]

it's great to see you documenting your experience it always makes interesting reading, hopefully the psoriasis will calm down again.
.
I keep meaning to ask , do you have regular monitoring of your bloods to ensure you are not damaging your liver or kidneys?

[Bill]

Hi Jim,

Yes I do, and I am due for another test fairly soon. I also regularly test my urine as a further precaution.

The increase in plaque area amounts to a few square centimeters forming over several weeks, so I am not too concerned.

Cheers,

Bill

[jiml]

Hi Jim,

Yes I do, and I am due for another test fairly soon. I also regularly test my urine as a further precaution.

The increase in plaque area amounts to a few square centimeters forming over several weeks, so I am not too concerned.

Cheers,

Bill

Thanks bill great news, they have never tested my urine, is that to test for protein leaking from the kidneys? To see they are functioning correctly?