Bill's pure dimethylfumarate thread

[Bill]

I had another blood test on Friday. Lymphocytes were 1. I will get the full report later. I have been taking 800mg of dimethyl fumarate five times a fortnight (previously weekly) since my last test a bit over three months ago, although I have not taken the drug since last Sunday as I caught a cold mid week. When the cold clears I will resume with twice weekly dosing. I will also continue with iron and B vitamin supplementation. My next test will be in two months.

Cheers

[Caroline]

Well that is not bad Bill !

Well done. Your dosing regime seems to be a consistently good one.

[JohnB]

I had another blood test on Friday. Lymphocytes were 1. I will get the full report later. I have been taking 800mg of dimethyl fumarate five times a fortnight (previously weekly) since my last test a bit over three months ago, although I have not taken the drug since last Sunday as I caught a cold mid week. When the cold clears I will resume with twice weekly dosing. I will also continue with iron and B vitamin supplementation. My next test will be in two months.

Cheers

Sorry about that Bill, I think I've given this blasted cold to everyone I know   . 

I take it the DMF is still working it's magic and have you noticed any benefit from sprinkling iron filings on your breakfast cereal?

[jiml]

Good result Bill nice to see the lymphocytes looking good and still with your regime keeping the disease at bay

[Fred]

I have not taken the drug since last Sunday as I caught a cold mid week.

Just curious on how soon you lose the benefits after stopping and how soon before it starts working again ?

[Bill]

Thanks, Caroline. I am trying to work out a stable dosing regime. I am thinking that seven doses every 4 weeks might work. It was good to have my lymphocyte count high enough to let me dose as I have.

Hi John,

With air travel you never know the pedigree of your next cold. At least with the warm weather I am recovering quickly. I will continue supplementing with iron twice a week as it did correlate with an increase in lymphocytes.

Thank you, Jim. I did hope I would cope a bit better on the higher dose, but that's the way the cookie crumbles with experiments.

Hi Fred,

Going by the last drug holiday I took, about three weeks before the psa starts to return: That is why I don't want a break of more than four weeks. The p is much slower to reappear so I could probably break for several months without much change, but with the psa appearing much faster I wont find out.

How long does it take to control things when I start dosing? From four to six weeks when I started taking dimethyl fumarate. I think it still takes about the same time, but these days there is much less p and psa to control. That said, sometimes the psa will get worse for a bit for no apparent reason, but that hasn't happened much of late. I am grateful that the drug works for me.

Cheers

[Fred]

Thank you Bill.

Long may it continue.

[Bill]

Another test result.



Lymphocytes normal, but not increased as much as I would like. I had a four week break from dosing after the cold started. There is the possibility that NAC may be an antagonist to DMF (Dimethylfumarate Induces Immunosuppression via Glutathione Depletion and Subsequent Induction of Heme Oxygenase 1). I will continue with twice weekly dosing at 600mg without NAC and see if there is any difference. Another blood test in three months.

Cheers

[Caroline]

Still good results Bill, a slight bit higher.

It seems that your dosing scheme works well, this quite pulsed dosing keeps your lymphocytes very nice.

I sometimes wonder how often one should have a blood test. How fast could your lymphocytes go down in case of... an infection or the combination of something with the medication. Would this be days, weeks, months?
Or in fact I am looking for the answer on the question. “How much is the blood test a short-time test?”
Or: “is it possible to have a count of 1.1 and a day later 0.5? “

What do you mean with NAC?

[Bill]

Hi Caroline,

Blood tests? Not more than three months between tests if in the normal range, two months for a grade one lymphopaenia, monthly if lower. When I had the jump in count (17/08) I should have had another test within two months, but looking at the stability of results I was not too worried. As for how quickly a count can change, the nine wbc count I had was a few days after getting a cold, and the increase mostly neutrophils. Jim had a really fast pick up in lymphocytes after his influenza.

NAC, or n-acetyl cysteine, is the stuff I have been taking to alleviate the tummy upset from DMF, but from a research paper I read it may antagonise the action of DMF by increasing the body's glutathione. The last 830mg dose of DMF I took was without NAC and it had a lot more kick. Maybe it was my imagination, but I will start taking some 600mg doses without NAC and see how it goes.

I have been enjoying you photos very much, but it looks a little chilly for a swim. I think the surf here would be a bath in comparison.

Cheers