Bill's pure dimethylfumarate thread

[Bill]

Over the past six weeks I have taken a further seven doses, or 5600mg of DMF. For the past few weeks I have taken the DMF as a finely ground powder. It is far more active in this form, so I have to be careful: Taking a dose with a large bowl of pasta caused me to vomit for the first time with DMF, whereas taken mixed with ice cream after a bowl of muesli works quite well. I continue to supplement with 2* 3.5 grams of glutamine, and add 2 grams of cysteine to each dose on days I take DMF. For the past few weeks I have also been using b12 patches (~5 patches a week). A blood test yesterday gave the following results:

Total WBC:6.9 N:5.1 L:0.966 M:0.7 E:0.07 B:0.07

Compare this with the test six weeks earlier:

Total WBC:5.6 N:3.9 L:0.896 M:0.6 E:0.11 B:0.06

Th lymphocyte count is lower than I would like, but has at least increased. As I am comfortable with the current DMF dosage I think that I will continue with it until my next blood test. I might also consider b12 injections to further investigate whether it might be having an effect on the cell count. I continue to avoid the sun.

[jiml]

Good to see whe white blood count going up Bill in particular the lymphocytes and almost recovered into the normal range
I would be very happy with those results, as they are moving in the right direction, it seems your dosing is about right as long as the psoriasis and Psoriatic arthritis are at an acceptable level

Shame the experiment with the pasta backfired, but the ice cream sounds a tasty way to take the dose

How will you get B12 injections? Are they available from your doctor?

[Fred]

Probably another on of my daft questions Bill.

But could you not take the powder mixed with a liquid. Water, tea, milk, etc ?

[Bill]

It seems to mix better with something a bit fatty, Fred, and ice cream also seems to carry it to my tummy with minimal fuss.

The drug is controlling my disease well thank you, Jim, although it would be nice to be able to take a few more doses. B12 ampoules are readily available here without prescription. There is not much evidence of the efficacy of patches, so the injections would provide clearer evidence of an effect.

[Fred]

It seems to mix better with something a bit fatty, Fred, and ice cream also seems to carry it to my tummy with minimal fuss.

Thank you Bill. Keep up the good work it certainly seams to be working for you.

[Bill]

Just a quick update. All my ideas on taking DMF have gone full circle. Licked off my hand and washed down with cola sounds awful, but it is by far the best way to take the drug. I tried it in Russian caramel, but I could not swallow it and ended up chewing it for ages and got a chemical burn at the back of my mouth for my efforts. The powdered form is too reactive for my taste. Taken with a bland meal makes the side effects milder.

My disease is essentially unchanged and I feel well. I have been dosing at 3*800mg every two weeks since my last test, and I will now increase this to 2*800mg a week until my next blood test in mid-October. The increased neutrophil count after using B12 and folic acid patches prompted me to try B12 and folic acid injections. I have been having 1mg/30mg im weekly for the past seven weeks, and I will stop the injections two weeks before my next blood test. I have also been taking 250mg vitamin E daily, which is a hell of a lot easier than the injections. My hope is that I might boost my lymphocyte count with these measures, but my expectation is that I will not.

Cheers

[jiml]

Just a quick update. All my ideas on taking DMF have gone full circle. Licked off my hand and washed down with cola sounds awful, but it is by far the best way to take the drug. I tried it in Russian caramel, but I could not swallow it and ended up chewing it for ages and got a chemical burn at the back of my mouth for my efforts. The powdered form is too reactive for my taste. Taken with a bland meal makes the side effects milder.

My disease is essentially unchanged and I feel well. I have been dosing at 3*800mg every two weeks since my last test, and I will now increase this to 2*800mg a week until my next blood test in mid-October. The increased neutrophil count after using B12 and folic acid patches prompted me to try B12 and folic acid injections. I have been having 1mg/30mg im weekly for the past seven weeks, and I will stop the injections two weeks before my next blood test. I have also been taking 250mg vitamin E daily, which is a hell of a lot easier than the injections. My hope is that I might boost my lymphocyte count with these measures, but my expectation is that I will not.

Cheers

You have certainly tried just about every combination to get the best results from your DMF, you are right licking off your hand doesn't sound appetising but if that's the best option and it works, you can't ask for more . Does it make a difference if it's with bland food rather than spicy food

It's good your disease is unchanged and being managed effectively ...have you been self injecting the b12 and folic acid ....it will be interesting to see your lymphocyte count, I hope that they will have increased

Great to read your updates Bill ...they are never dull

Jim

[Caroline]

Thanks for your update Bill.
Very interesting that taking it with cola is the best solution.

Your thread has become an amazing document on the alternative use of DMF and the proof of the sense of intermittent taking it.

[JohnB]

It still fascinates me reading your human guinea pig exploits Bill.

Dumb question but could the DMF not be suspended in the Coke? Surely it will irritate the back of your hand eventually.

Definitely needs throwing together as a PhD thesis. 

[Bill]

Thanks, Jim. If you don't try you don't know. Yes, I self inject with b12 and folate. Bland food is better, but remember that I take 800mg doses.

Thank you, Caroline. Simple has proved better. Yes, treatment with DMF powder has been very cheap and effective for me with unconventional dosing. Keep posting your wonderful pictures.

Thank you, John. No such thing as a dumb question. No hand irritation so far, so unlikely. I lick the powder from the palm of my hand, and I wash my hands before and afterwards. I think that the bubbles that form on the DMF crystals make them easier to swallow. DMF mixes poorly with water and would require a surfactant: What I do works and is easy. Lymphopaenia is the main problem with DMF, so it is worth looking for a simple remedy.


Cheers