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Bill's pure dimethylfumarate thread

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

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#41
Tue-07-04-2015, 14:30 PM
(Tue-07-04-2015, 07:00 AM)Bill Wrote: A further update. I have been maintaining an 800mg single dose three times weekly. This regime is very effective. My Pasi remains below 0.5, with about 0.5% of my skin with inactive plaques, the biggest being a spot on my right shin about the size of a finger. The arthritis is reduced, but still a bloody nuisance. I would gladly suffer a Pasi of 40 in its stead.

I did another white cell count and got a result around 9, up from around 5.5 when I last checked in October. I will repeat the test over the next few weeks to get a more accurate result as I am sure that I am a bit rusty, then I will have a go at a differential count. If the result is accurate it would suggest that for me, higher dosages taken less frequently are effective against the disease but do not suppress the white cell count to the same extent, and perhaps not at all.

Cheers,

Bill

Thanks Bill for the update they always make interesting reading , I'm glad it's still working for you.
Would increasing the regularity or size of the dose not alleviate the arthritis ? Or are you at a maximum you are comfortable with ?
About your white cell count do you know what the lymphocyte count is? Or do we assume that because the overal white cell count is normal that the lymphocytes will be normal as well?  I can't remember if you had it checked by your doctor as well as your diy testing  Wink
As I say always interesting reading Thumb
Jim
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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
#42
Wed-08-04-2015, 12:25 PM
Thanks for the encouragement. Fred, I have felt very well so I have not bothered with a blood count, and only did so because I developed a small boil in my armpit. A further count today gave a result of 6, so I will need a bit of consistency before I give the value much credence. Jim, maybe a larger or more frequent dose would be better, but what I am on currently is working. I would like to stay on it for a few more months and do a number of blood counts to make sure it is safe. When I get a little quicker and more consistent I will do a lymphocyte count. Btw, I have been taking the DMF with soda water halfway through a meal. The DMF seems to attach to the bubbles and so is more easily swallowed. Hope you are all fighting fit.

Cheers,

Bill
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
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Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#43
Wed-08-04-2015, 12:57 PM
(Wed-08-04-2015, 12:25 PM)Bill Wrote: Thanks for the encouragement. Fred, I have felt very well so I have not bothered with a blood count, and only did so because I developed a small boil in my armpit. A further count today gave a result of 6, so I will need a bit of consistency before I give the value much credence. Jim, maybe a larger or more frequent dose would be better, but what I am on currently is working. I would like to stay on it for a few more months and do a number of blood counts to make sure it is safe. When I get a little quicker and more consistent I will do a lymphocyte count. Btw, I have been taking the DMF with soda water halfway through a meal. The DMF seems to attach to the bubbles and so is more easily swallowed. Hope you are all fighting fit.

Cheers,

Bill

Great stuff Bill agree that if what you're doing is keeping control then stick with it Thumb
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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
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#44
Fri-08-05-2015, 13:01 PM
A further update. I have started using a topical treatment twice daily as well as the DMF. It has been remarkably effective and my pasi is now around 0.3. A diy white cell count last week gave a result of 6700 (+/-700) per mm^3 wbc and 1800 (+/-200) per mm^3 for lymphocytes. I feel well and have not had a cold for over six months. The higher and less frequent doses appear to control the disease without substantially reducing the white cell count. With the success of the topical I thought I might try a 1000 mg dose. I did this twice, a week apart. On each occasion the gi symptoms were worse and I had a headache for several hours the next day. So although I found it controlled my arthritis better, I will be sticking with 800 mg doses three times weekly. I remain confident of further improvement.

Cheers,

Bill
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#45
Fri-08-05-2015, 13:21 PM
(Fri-08-05-2015, 13:01 PM)Bill Wrote: A further update. I have started using a topical treatment twice daily as well as the DMF. It has been remarkably effective and my pasi is now around 0.3. A diy white cell count last week gave a result of 6700 (+/-700) per mm^3 wbc and 1800 (+/-200) per mm^3 for lymphocytes. I feel well and have not had a cold for over six months. The higher and less frequent doses appear to control the disease without substantially reducing the white cell count. With the success of the topical I thought I might try a 1000 mg dose. I did this twice, a week apart. On each occasion the gi symptoms were worse and I had a headache for several hours the next day. So although I found it controlled my arthritis better, I will be sticking with 800 mg doses three times weekly. I remain confident of further improvement.

Cheers,

Bill

Thanks Bill it's always good to read your updates .... Long may your DIY regime continue to give you relief, I love the way you tinker with the dose
Bloods sound good as well
Congratulations Clap
Jim
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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#46
Fri-08-05-2015, 14:41 PM
Nice update Bill, like Jim I too like reading your updates.

Though I still do have this image of you working away in a special little room at the back of your cellar, tinkering away with your laboratory instruments wearing a white coat.  Smile

Question: The 800 mg dose three times a week, do you take the 800 in one go or spread it over a period of one day. I ask because your trial of 1000 mg and the problems, I wondered if you split it through the day say 333 at each meal if it would help.  
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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
#47
Fri-08-05-2015, 23:41 PM
You are very welcome Jim and Fred. To answer the question of dosage, I have found that taking DMF in a single large dose is far more effective than divided doses. I could take 240 mg three times daily and the effect on my psoriasis and psoriatic arthropathy would be less than three single 800 mg doses weekly that I now take. The big advantage is that the overall dosage is lowered and the suppression of the white cell count is reduced.

Cheers,

Bill
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Grizzly Bear Offline
I’m a born again lesbian & proud of it !

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Treatment: Carbolic Acid & Neat Bleach
#48
Sat-09-05-2015, 00:29 AM
Brilliant news Bill.

Thanks to you, my P seems to be calming down.

I have been making some interesting concoctions with Stockholm tar liquid etc.

Yes, i smell like a walking tar factory but I don't give a rodents posterior.

Ok, as I said in another thread, I've lost the hair on my legs but the P has nigh on vanished.

So Bill, keep up the good work mate.
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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
#49
Sat-09-05-2015, 03:32 AM
Great stuff, Grizzly. May you keep improving and save yourself some money. It makes good sense to make your own tar products as the markups are phenomenal.

Cheers,

Bill
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#50
Mon-25-05-2015, 10:27 AM (This post was last modified: Mon-25-05-2015, 10:28 AM by jiml. Edited 1 time in total.)
Hi Bill... You mentioned a patent challenge to Biogen by Kyle Bass over the patent on Tecfidera which expires in 2019 and although we know  Tecfidera is not designed for psoriasis. It contains the same active ingredient as Fumaderm, and Psorinovo

I hadn't heard so thanks for the information Thumb

I see the challenge is on big pharmaceutical companies that are gaining patents on drugs that Kyle Bass think should never have been given a patent, including Tecfidera as it is a basic drug that has been in use for over 30 years ( just packed in a new tablet.)

I hope he doesn't get paid off by the drug companies to drop the challenge, as he has in the past I have read.....
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