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Bill's pure dimethylfumarate thread

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Bill's pure dimethylfumarate thread
Bill Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
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Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#411
Thu-27-06-2019, 08:53 AM (This post was last modified: Thu-27-06-2019, 08:53 AM by Bill. Edited 1 time in total.)
Thanks Caroline. That line of reasoning would make my concern with a mild lymphopaenia misplaced. The worry I have with it is that it will keep dropping. Fortunately I get clear warning signs if this happens.

Cheers
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Posts: 26,518
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Location: In between the tulips
Psoriasis Score: 3
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PQOLS: 4
Treatment: Got back to DMF slow release
#412
Thu-27-06-2019, 20:24 PM
(Thu-27-06-2019, 08:53 AM)Bill Wrote: Thanks Caroline. That line of reasoning would make my concern with a mild lymphopaenia misplaced. The worry I have with it is that it will keep dropping. Fortunately I get clear warning signs if this happens.

Cheers

Hi Bill,
What warning signs do you mean? The measurements of your blood?

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Bill Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#413
Sat-29-06-2019, 05:34 AM
Well Caroline, when my lymphocyte count drops below 0.8 I get very tired and susceptible to colds. Above 0.8 I don't get any indication of where the count is headed.
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,518
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Gender: Female
Location: In between the tulips
Psoriasis Score: 3
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PQOLS: 4
Treatment: Got back to DMF slow release
#414
Sun-30-06-2019, 12:42 PM
(Sat-29-06-2019, 05:34 AM)Bill Wrote: Well Caroline, when my lymphocyte count drops below 0.8 I get very tired and susceptible to colds. Above 0.8 I don't get any indication of where the count is headed.

That is a very interesting reaction Bill. Very good also for alerting you.
Personally i have never found any other reaction to DMF other then the usual flush and the strange phenomenon that I always have warm hands.
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Kat Offline
Take my advice; I don't use it anyway.
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#415
Sun-30-06-2019, 16:02 PM
Bill your thread here is always interesting and very informative and I'm always amazed at how well you manage on your own.

I hope the lower dose continues to work for you.
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Bill Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#416
Mon-01-07-2019, 11:23 AM
Thank you for your encouragement, Kat. A lower dose would be much better.

Cheers
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Bill Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#417
Sun-04-08-2019, 02:06 AM
Another test and not much change:

[Image: CEPvS19.jpg]

I have reduced my dose to 530mg taken Fridays and Sundays. I have stopped all supplements aside from B vitamins and D3. The only change has been the development of two very small spots on my neck and foot, but I this this part of the normal oscillation of the disease. I was hoping the lymphocytes might recover a bit more, but sadly they did not. At least I can draw consolation from Caroline's suggestion that the lymphocyte drop is a measure of efficacy. I shall continue with twice weekly dosing until my next test.

Well wishes to all.
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jiml Offline
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Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#418
Sun-04-08-2019, 18:53 PM
(Sun-04-08-2019, 02:06 AM)Bill Wrote: Another test and not much change:

[Image: CEPvS19.jpg]

I have reduced my dose to 530mg taken Fridays and Sundays. I have stopped all supplements aside from B vitamins and D3. The only change has been the development of two very small spots on my neck and foot, but I this this part of the normal oscillation of the disease. I was hoping the lymphocytes might recover a bit more, but sadly they did not. At least I can draw consolation from Caroline's suggestion that the lymphocyte drop is a measure of efficacy. I shall continue with twice weekly dosing until my next test.

Well wishes to all.

Great result Bill only just under normal the lymphocyte count everything else is looking good as well ..on such a low maintenance dose equivalent to arond 4.5 skilarence tablets twice a week .lets hope it keeps working well and your lymphocyte count comes up into the normal range again and stays there
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Bill Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#419
Mon-05-08-2019, 12:34 PM
Thank you, Jim. I think Caroline is correct with her observation that a lymphocyte reduction is associated with the efficacy of DMF. This gives me peace of mind as I no longer feel that I need to take a variety of supplements to try and bump up the count, and I am being tested often enough to see that my count is as boring and unchanging as yours.

Cheers
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Posts: 26,518
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Location: In between the tulips
Psoriasis Score: 3
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PQOLS: 4
Treatment: Got back to DMF slow release
#420
Tue-06-08-2019, 19:13 PM
This is from RE: ArteMie's journey with Stelera, but I do not want to hike Artemie’s Thread on Stelara.

(Mon-05-08-2019, 12:24 PM)Bill Wrote: I don't blame you ArteMie. I turn red as a beetroot and feel crappy for about five hours every time I take my drug. That is the trade off for feeling better the rest of the time.

A healthy diet sounds very worthwhile. I shall follow your progress with much interest.

Cheers

Do you really turn beetroot after taking it?
I also have that, now I have restarted DMF again, but with me it is 20-30 minutes. Might that be because of the regularity I take it, as in every day, and in lower dose? Compared to your high dose two times a week.
Seems very inconvenient to have it five hours.

Oh and by the way, I don’t feel crappy during a flush.
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