Bill's pure dimethylfumarate thread

[jiml]

Yes there is a lot of experience of the disease here, and you are right we have no idea about what the best way forward for you is.... but it’s always good reading of your experiments and the thought process that leads you to your various decisions. I admire the amount of research you do to find solutions that work for you , looking at your reasoning and your confidence that a break will not adversely affect your disease. I can understand wanting to get the lymphocytes back up to the normal range. So perhaps a short break might do the trick
Good luck ( I won’t mention the cricket,   )

[Caroline]

Understood Bill.  
Absolutely great that you have everything so nicely under control.

Could you knowledge just be the knowledge of the average dermatologist, but that is probably an impossible wish of me.    

[Bill]

Caroline, I am one person with one illness managing one medication for the past five years. Your dermatologist manages many people of varying compliance and understanding with many skin problems and co-morbidities with a multitude of medications which have their own idiosyncrasies for each patient. Further, there is the difficulty and frustration of dealing with health systems and insurance companies, not to mention difficult patients corked by illness. It sounds like a very difficult job.

[Caroline]

Caroline, I am one person with one illness managing one medication for the past five years. Your dermatologist manages many people of varying compliance and understanding with many skin problems and co-morbidities with a multitude of medications which have their own idiosyncrasies for each patient. Further, there is the difficulty and frustration of dealing with health systems and insurance companies, not to mention difficult patients corked by illness. It sounds like a very difficult job.

Hi Bill,

You are absolutely right about a dermatologist having more on his head than one specific DMF user who has his own way of dealing with his problem and thus finds all kinds of additional approaches.

On the other hand, dermatologists have done a study in dermatology. Psoriasis is a solid part of that study. Still I personally had to go to a non-dermatologist in order to receive the correct treatment over here in the Netherlands. And I have found out that even handing over efficient information to dermatologists on the use of DMF, a medication they certainly know, is very difficult. They don't have the attitude to accept information that comes from other sources, except for a few good ones of course, but the average.... is not yet so open for hints, but maybe that may be changing as the patients are getting more and more knowledged.

[Bill]

Excellent points, Caroline, and it is much worse here in Australia where you cannot even have DMF treatment from a dermatologist, let alone a general practitioner. Yes, I believe that DMF could deliver far better results for p and psa were it used differently, but this is only true for me and my opinion for others. In some ways I am glad that I have been able to be a guinea pig. I have not had to take drugs with dangerous side effects or deal with bureaucratic delays and frustration. I have had the fun of customising my treatment to a dosing regime which controls my disease and has showed no loss of efficacy, and believe that had I been prescribed DMF according to protocol I would have had my treatment discontinued in under a year. I am also really pleased to have the best treatment for me for a couple of dollars a year. I think that a biologic treatment would not have worked as well and failed long ago.

[Bill]

I had a blood test on Monday (15/1/2018). Here are the results:

WBC:6.0 N:4.4 L:0.90 M:0.5 E:0.12 B:0.06

Compare with 2/12/2017:

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 with 12/06/2017:

WBC:5.6 N:3.9 L:0.896 M:0.6 E:0.11 B:06

So despite having a break from DMF for four weeks there is no change in my lymphocytes. I guess that shows astragalus to be useless, but it also suggests the possibility of other variables. Exercise may be a factor as I have been doing much more of this of late. I have been well, with no coughs or colds since December 2016. During the break from DMF I had almost no change in plaque psoriasis. Psa started to return after three weeks, but responded well to a resumption in dosing on Monday.

I will continue with twice weekly dosing (800mg) as well as b12/folate patches and fortnightly b12/folate injections. I will also try and grow some daisies so I can test echinacea. I will also revisit diy blood counts. I have ordered some more cover slips for the hemacytometer as well as some Leishman's stain so I can do the differential count properly. Diy counts will hopefully assist me.

Cheers

[jiml]

That's annoying Bill I would have hoped the lymphocyte count would have recovered to at least 1 after your break from DMF. All the other indicators are good though ...I can't think of a reason they have not recovered, although not dangerously low, the fact they aren't showing signs of recovery after a break is concerning.

Yes I think it's time to get the white coat out again and start your self testing

[Bill]

I'm annoyed but not very worried, Jim. My disease is very well controlled and I now have a precedent for a three week break from treatment. I have also found a good way to use my topical. I feel well and have not had a cold for over a year despite the low lymphocytes, and otherwise my wbc count is fine. There is redundancy in the immune system, so it is probable that the deficit is being compensated. I also have another possible contributor to lymphopaenia for me to assess.

Cheers

[jiml]

Yes you should be happy the results the lymphocytes are not far off normal and everything else looks good

I hope you find the cause of the continued but mild lymphopaenia

[Bill]

Thanks Jim.