Wiil do, Jim.

Thanks, John.

I don't think there is much effect on the lymphocytes, but there possibly is an effect on neutrophils with the b12 and folate patches/injections, so I might test this a little more. It is disappointing that the lymphocytes have not increased as I would like to increase the dose, but the disease is well managed so I should be very grateful.

An update. I had a blood test two weeks ago (2/12/2017). Here are the results:

WBC:5.7 N:4.0 L:0.914 M:0.6 E:0.11 B:0.06

Compare with 13/10/2017

WBC:5.0 N:3.3 L:0.9 M:0.7 E:0.15 B:0.05

Compare with 24/07/2017

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

Compare wit 12/06/2017:

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

I have been dosing at 800mg twice weekly since the test on 13/10/2017 and have missed only 2 doses from then to the test on 02/12/2017, so it seems that the B12/folate patches might be doing something, especially for the neutrophils, whereas the B12/folate injections did nothing. I was expecting a lymphocyte count of <0.8 given my recent dosing and was thinking of taking a break from DMF for four weeks from Christmas. I may reconsider in light of the stability. I have been eating more carrots and I have been taking astragalus since 22/11/2017, but it is way to early to see if this is doing anything. I will have another blood test late in January.

How long does it take for the DMF to get out of your system Bill ? I ask because I'm thinking a sudden break for 4 weeks could be a bad thing.

The DMF is completely metabolised within a day I think, Fred. I have taken breaks before and have noticed slower relapses with each one, so I now think of a break as a test of my disease. The worsening of psa is my stimulus to dose again. The advantage of taking a break is that it can quickly raise my lymphocyte count: The lymphopaenia a year ago could have been resolved with a break of about five weeks. I am still of the opinion that a higher lymphocyte count will resist more frequent dosing.

(Sun-17-12-2017, 13:14 PM)Bill Wrote: The DMF is completely metabolised within a day I think, Fred. I have taken breaks before and have noticed slower relapses with each one, so I now think of a break as a test of my disease. The worsening of psa is my stimulus to dose again. The advantage of taking a break is that it can quickly raise my lymphocyte count: The lymphopaenia a year ago could have been resolved with a break of about five weeks. I am still of the opinion that a higher lymphocyte count will resist more frequent dosing.

You could be right about a break giving the lymphocytes time to recover, but while they are only just outside normal and reasonably stable, I don’t see the need for a break

Personally I wouldn’t take a break for fear of a big flare that might be difficult to resolve. I’m nervous about tinkering with what isn’t broken

(Sun-17-12-2017, 13:22 PM)jiml Wrote: Personally I wouldn’t take a break for fear of a big flare that might be difficult to resolve. I’m nervous about tinkering with what isn’t broken  

Yes that is what I was thinking.

Good luck though Bill, and thank you for the updates.

I have had over 15 months with a lymphocyte count below one. DMF carries very little risk of rapid relapse if it is stopped. I am more concerned with being able to dose optimally and note that I could dose more frequently with a higher count. With a flare at a lower count I am pretty much stuck. The management of psoriasis is different for everyone, Jim.

Cheers

You are right Bill we are all different and react differently to drugs due no doubt to differing diets and lifestyles, as we are all built the same reactions to drugs would probably be the same if we were clones of each other ....
But you know your body and what it can tolerate, so I will watch with interest how it works out ( I'm a great fan of your experimenting ) but don't have the balls to do it myself

(Sun-17-12-2017, 13:50 PM)Bill Wrote: I have had over 15 months with a lymphocyte count below one. DMF carries very little risk of rapid relapse if it is stopped. I am more concerned with being able to dose optimally and note that I could dose more frequently with a higher count. With a flare at a lower count I am pretty much stuck. The management of psoriasis is different for everyone, Jim.

Cheers

I was thinking the same as Fred, but more from the direction of the development of anti bodies against DMF. Or is that not possible. I know that some TNF blockers suffer from that. Once stopped then restarting can fail.

This is why I like you guys. Collectively we would have over a century of psoriasis experience (a bit over half of Steve Smith's first innings in Perth), yet none of us has a firm view of what I should do. Yes, DMF can cause allergies. Like any drug the body can compensate and reduce the efficacy for DMF; I had this happen at a dose of 3*240mg a day, but not at 800mg twice a week. DMF would have to be at least 25 times bigger to be at risk of my body making antibodies against it.

My disease is currently very well controlled. I have been experimenting unsuccessfully for nearly 12 months with all sorts of things to get my lymphocyte count back to normal. I have taken breaks from treatment for up to six weeks without major incident. I have noted that with my disease controlled there is less chance that a break from treatment will be problematic. With my current lymphocyte count I could be back to a normal range with a break of as little as three weeks. With a normal lymphocyte count I have been able to have a higher DMF dosage which better manages my disease. I have an opportunity to take a break now that I will not have if I wait to see if my current supplements are helping. I think a break is probably worth trying.