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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 !
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Treatment: Dimethyl fumarate
#221
Sat-25-03-2017, 09:48 AM (This post was last modified: Sat-25-03-2017, 21:32 PM by Bill.)
An update.

600 mg twice weekly dosing is not as effective against the arthritis, and 1200 mg dosing is in hindsight better than I thought, but neither seems as good as the twice weekly 800 mg regime that I was on. I stopped this regime because of what I believe to be a sun exposure induced lymphopaenia. Here is the data that leads me to this conclusion:

Date                                 WBCs                         Neutrophils                           Lymphocytes

03/05/2016                        4.9                                 3.1                                      1.1

22/08/2016                        4.8                                 3.3                                      0.9

12/12/2016                        5.4                                 4.1                                      0.6

05/01/2017                        5.9                                 4.4                                      0.7

06/02/2017                        5.8                                 4.4                                      0.8

06/03/2017                        5.9                                 4.3                                      0.8

The sun baking commenced a little before the test on 22/08/2016 and was most frequent until 12/12/2016. I caught a cold just after the 12th and only sunbaked once before the next test. Sun baking was typically twice or three times a week, full body, and of about twenty minutes duration. The result is consistent with sun exposure increasing the total leukocyte count and DMF sensitising lymphocytes. I am now avoiding sun exposure and instead supplementing with d3. Although I could probably see my lymphocytes back above 1.0 with a month long drug holiday, the back pain is too unpleasant and I will restart 800 mg twice weekly dosing. Diet wise I have been having bread and skim milk powder. As both of these foods have triggered arthritis in the past, I will stop eating them for a while. I will also eat more salads and exercise a little more.

My feelings are mixed: It is nice to learn something and it has made me think about dosing, diet and exercise, but the episode has been painful and inconvenient.
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JohnB Offline
I wanted to be an Engineer when I grew up, but was told I could'nt do both

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#222
Sat-25-03-2017, 11:30 AM
Bill your journey has been a fascinating read and I am really impressed with the level of detail you record. I'll hazard a guess its better than some clinical trials. Have you ever thought of publishing a paper?
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Bill Offline Author
100 + Member I Just Cant Stop !

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Treatment: Dimethyl fumarate
#223
Sat-25-03-2017, 12:12 PM
Thanks, John. I wish I'd recorded more detail earlier as it might have allowed me to recognise problems sooner. I've written a submission to a pharmaceutical advisory committee in Australia. I think that DMF could be a more useful drug if it is used a little differently. I have at least made it work well for me and I would like to be able to access a further supply of DMF when I require it without government interference or constraint.

If you do start Fumaderm then consider supplementing with l-cysteine or n-acetyl cysteine. I think that Jim is right about it helping reduce the side effects with Fumaderm, and I suspect that it might also offer some protection to the liver and kidneys, at least early on. At least it will not harm you.

Cheers,

Bill
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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#224
Sat-25-03-2017, 12:18 PM
Thank you for keeping this thread updated Bill.

Thumb
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Caroline Offline
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Treatment: Got back to DMF slow release
#225
Sat-25-03-2017, 19:44 PM
(Sat-25-03-2017, 12:12 PM)Bill Wrote: Thanks, John. I wish I'd recorded more detail earlier as it might have allowed me to recognise problems sooner. I've written a submission to a pharmaceutical advisory committee in Australia. I think that DMF could be a more useful drug if it is used a little differently. I have at least made it work well for me and I would like to be able to access a further supply of DMF when I require it without government interference or constraint.

If you do start Fumaderm then consider supplementing with l-cysteine or n-acetyl cysteine. I think that Jim is right about it helping reduce the side effects with Fumaderm, and I suspect that it might also offer some protection to the liver and kidneys, at least early on. At least it will not harm you.

Cheers,

Bill

Bill,
Do you think the I-cysteine will have effect on the MEF part of Fumaderm? As this is the part that is not good for the liver and kidneys.
You yourself have only used DMF.

Cheers,
Caroline
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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
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Treatment: Dimethyl fumarate
#226
Sat-25-03-2017, 21:29 PM
Hi Caroline,

There is a comparative study on the effects of DMF and MEF, <Dimethyl fumarate and monoethyl fumarate exhibit differential effects on KEAP1, NRF2 activation, and glutathione depletion in vitro>. MEF does not seem to deplete GSH, so l-cysteine may not help, but I dont know. There are reports of liver toxicity with Tecfidera, so DMF can be hepatotoxic on its own, but whether l-cysteine supplementation can prevent this is speculative. All I know is that it makes it much easier for me to take DMF.

Cheers,

Bill
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Grizzly Bear Offline
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#227
Sat-25-03-2017, 22:17 PM
G'day Bill,

Interesting as always to read your journey mate Thumb

Good update Bill, long may your P continue to be controlled buddy. shake

Andy
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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
#228
Sun-26-03-2017, 02:42 AM
Thanks, Andy. I have very little to complain about other than a bit of active disease in the spine which has gone into spasms and been quite painful and debilitating. But I take great comfort from it as it is the only bit of painful arthritis I have left, and I suspect that I will get good relief soon with a change in treatment and diet.

I hope you are well and able to keep fighting for some effective treatment.

All the best,

Bill
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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
#229
Sun-26-03-2017, 07:28 AM
(Sat-25-03-2017, 21:29 PM)Bill Wrote: Hi Caroline,

There is a comparative study on the effects of DMF and MEF, <Dimethyl fumarate and monoethyl fumarate exhibit differential effects on KEAP1, NRF2 activation, and glutathione depletion in vitro>. MEF does not seem to deplete GSH, so l-cysteine may not help, but I dont know. There are reports of liver toxicity with Tecfidera, so DMF can be hepatotoxic on its own, but whether l-cysteine supplementation can prevent this is speculative. All I know is that it makes it much easier for me to take DMF.

Cheers,

Bill

Yes, I have heard of this liver toxity of Tecfidera. But in all patients in the Netherlands, that are thousands, who have used Psorinovo, there was never a sign of liver problems as far as I can remember. But to be sure I will ask my doctor, I am going to see him anyway coming week or the week thereafter.

Cheers,
Caroline
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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
#230
Sun-26-03-2017, 10:16 AM
It will be interesting to see what you come up with, Caroline. Doesn't seem to be an issue with long term use.

I get tested again tomorrow week, so I hope I can get back to normality.

Cheers,

Bill
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