Bill's pure dimethylfumarate thread

[Caroline]

Well Bill that is a very clear signal.
Iamintheteam has been on the forum yesterday, so at least he must have seen this discussion.
It would be good if he would react indeed, that could help us in getting some relief that he is not doing the wrong things.

[ImtheIinteam]

The source is reputable after all, and the amount I would ingest at a time would be 0.03mL, but you all have more knowledge than I, and transferring knowledge from research papers to the real world can be a messy business. I talked to the company and they do sell DMF after all (just not through eBay, LOL), so I will have them ship that to me instead, or just buy the fumaric acid supplement Psorex from Ecological Formulas (there is another supplement out there with 500mg fumaric acid per pill, but that seems a little strong). It seems like the acid form doesn't work as well as DMF, but it might be a safer start. What do you all think?

[jiml]

Don't get the fumaric acid it will do nothing for the psoriasis you need the fumaric acid esters that's different to the supplement you are looking at  but Bill and. Caroline know more than me they will put you on the right track

Thanks for coming back

[Fred]

What do you all think?

I think you're mad.

I would urge everyone to get professional treatment and not self treat. Yes I know Bill does, but he has put a lot of work into it. It's a dangerous game as you have found out, so go and see a dermatologist.

You asked.

[Bill]

Good to hear from you IITT. Diethyl fumarate is a liquid at room temperature, so whilst you may have a pure product, it is useless for your disease and could harm you. Dimethyl fumarate is what you want, so be sure that is what you get. You should at least have a blood test before taking the drug to check your blood parameters, liver and kidney function. Ongoing blood tests are also very necessary as your lymphocyte count can fall dangerously low. I have found that topical treatments and sunlight are very helpful adjuncts to DMF treatment.

With the benefit of hindsight, I would probably start taking DMF as a 100mg dose every second day and I would increase the dose by 100 mg weekly provided the side effects were tolerable. Ideally, topicals, sun and ocean swims should accompany your treatment. While you are increasing the dose in this fashion you should have monthly blood tests. For me, an 800 mg dose is as much as I can stomach, even with cysteine pre-dosing, and if I take this amount more than twice a week my lymphocytes will drop too low.

I do not endorse doing what I do, and would recommend reading extensively about DMF therapy before commencing self-treatment. Most importantly you require medical oversight. Without this you are at serious risk.

Please start your own thread and introduce yourself. You will find the people here very caring and helpful.

Good luck,

Bill

[Bill]

An update. My latest blood count (12/12/16) gave a lymphocyte count of 0.6. I developed a cold a couple of days later so fortunately I have only had a couple of doses since. It is an odd development as I have not been changing the dosage. The only thing that has changed is that I have been getting more sun exposure, so I suspect that this is the cause. I will be avoiding the sun and taking a d3 supplement instead. I had a further blood test today, and dependent on the result I may be on a drug holiday for the next six weeks or so. My disease is very well controlled with skin coverage less than the area of a finger. The arthritis is well controlled also.

I did take a wrecking ball dose of 1200 mg a couple of days ago (oops!) and was hoping by this means to go to weekly dosing. Obviously this strategy will go on hold until my lymphocyte count recovers.

Cheers,

Bill

[jiml]

Strange that your count has dropped to that level but by reducing the dose it should bounce back... do you think natural sunlight could have that effect. I know we don't get that much sun here. But in the summer months I practically live outside in the sun.

Great that you have the disease under control, and a short break or reduction should see your bloods st an acceptable level

I hope that 1200 dose should wont drag the blood count lower for you

Great to read your posts, it's great hearing how the raw dmf works for you

[Bill]

Thanks, Jim. I am sure my count will recover, but the extra sun is really the only change I made. I did get full body exposure, and the research I could find showed that sun exposure reduces cd4 and cd8 t cell subsets, so it is probably acting in synergy with the dimethyl fumarate. The odd thing is that with high sun exposure the research shows you generally have higher lymphocyte counts, so the combining of DMF with sunshine is something to be wary of.

Cheers,

Bill

[Fred]

I did take a wrecking ball dose of 1200 mg a couple of days ago (oops!) and was hoping by this means to go to weekly dosing. Obviously this strategy will go on hold until my lymphocyte count recovers.

You never fail to entertain Bill.

Just like a mad scientist, trying things out in his secret lab.  

Keep up the good work.

[Bill]

Goodo, Fred. There is research suggesting that a high vitamin d blood level is the culprit with DMF use, but I think that this would only apply in cases where the high d levels result from sun exposure. Anyway, as I am now avoiding the sun and supplementing with vitamin d3, I will find out for myself soon enough.

I wish I could share your amusement, but I am pleased to find a possible link with sun exposure and a low lymphocyte count with DMF usage. It may be possible to use less DMF by combining it with UVB, but for now I want to see my lymphocyte count recover and then see where it goes when I resume DMF with d3 supplementation and minimal sun exposure. PML is a risk when the lymphocyte count stays below 0.8 for more than six months, but it was still a bit of a shock.

Cheers,

Bill