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[split] Dimethylfumarates and Psoriasis

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[split] Dimethylfumarates and Psoriasis
LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#321
Mon-27-06-2016, 20:46 PM
My friend she has very bad stomach reactions, probably will stop taking the pills... Seems that one of main reasons of stopping would be same for her. Too bad as she has not much changes and started making photos.

Ladybug Joana
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LadyBug Offline
Member


Posts: 66
Threads: 1
Joined: Sep 2014
Gender: Female
Location: Poland
Treatment: started Psorinovo
#322
Mon-27-06-2016, 20:47 PM
(Sun-26-06-2016, 09:51 AM)Bill Wrote: Good to read of your continuing success with DMF. I have not found a loss of efficacy after 3 1/2 years. If anything it has become more effective. Combining doses has worked very well for me, but it is much harder on the tummy.

That scares me and makes me worried.
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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
#323
Mon-27-06-2016, 20:52 PM
(Mon-27-06-2016, 20:47 PM)LadyBug Wrote:
(Sun-26-06-2016, 09:51 AM)Bill Wrote: Good to read of your continuing success with DMF. I have not found a loss of efficacy after 3 1/2 years. If anything it has become more effective. Combining doses has worked very well for me, but it is much harder on the tummy.

That scares me and makes me worried.

It scares me as well J . But remember Bill is taking raw DMF, and is a keen experimenter

Re your friend ...is she taking the psorinovo with meals and plenty of fluid, do you know?
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Caroline Offline Author
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,504
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#324
Mon-27-06-2016, 21:59 PM
(Mon-27-06-2016, 20:52 PM)jiml Wrote:
(Mon-27-06-2016, 20:47 PM)LadyBug Wrote:
(Sun-26-06-2016, 09:51 AM)Bill Wrote: Good to read of your continuing success with DMF. I have not found a loss of efficacy after 3 1/2 years. If anything it has become more effective. Combining doses has worked very well for me, but it is much harder on the tummy.

That scares me and makes me worried.

It scares me as well J . But remember Bill is taking raw DMF, and is a keen experimenter

Re your friend ...is she taking the psorinovo with meals and plenty of fluid, do you know?

Yes, Bill is taking the raw stuff, which is very far from Psorinovo.
It is a pity your friend has stomach problems, that is rare when using Psorinovo, you are very sure she has the correct ones?
Are they really stomach reactions or are they intestine reactions, the latter would be more normal.
Can she perhaps take a lower dose? Or more intermittent ?
Indeed, first having a good meal may help.
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Bill Offline
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
#325
Tue-28-06-2016, 10:22 AM
No reason to worry. Instead, you should feel reassured. Taking an 800 mg dose without harm over a long period should make you feel safer taking 240 mg. And although 800 mg is a large dose, as I only take it twice a week I am taking less than a third the weekly quantity of someone on the maximum Fumaderm dose. Further, the DMF I take contains no mono-ethyl fumarate, which is toxic and has no efficacy. The large dose I take has been worked up to slowly and I have found it to have a greater efftcacy against both my P and PSA. I dont take it for fun. I am currently trying to reduce the gastric upset after doses. Taking a couple of grams of cysteine dissolved in fruit juice about half an hour prior to taking DMF has greatly mitigated the side effects, but whether it will do so consistently I do not know.
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Caroline Offline Author
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,504
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#326
Tue-28-06-2016, 11:46 AM
Very interesting experiments, with very interesting conclusion you always do Bill.
I also admire the carefulness you do this with.
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Bill Offline
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
#327
Wed-29-06-2016, 09:22 AM
At least I have not killed myself. What I dont understand is the assumption that my treatment is inherently bad. Is my disease not controlled? Are there better treatments available for my disease? Have I been forced to take less than ideal treatments by reason of economy? Have I had to wait long periods to access treatment? Is my treatment expensive? Can my treatment be customised to maximise the benefit for me? Have I suffered adverse effects and am I being adequately monitored? Surely outcome is a more important consideration than provenance? Can a medication costing $10 a year not be more effective than a medication costing $2000 a year or $20,000 a year?

ps. I am looking forward to my next dose so I can see if two grams of cysteine taken half an hour before the DMF reduces my side effects. This could be useful information.
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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
#328
Wed-29-06-2016, 10:25 AM
(Wed-29-06-2016, 09:22 AM)Bill Wrote: At least I have not killed myself. What I dont understand is the assumption that my treatment is inherently bad. Is my disease not controlled? Are there better treatments available for my disease? Have I been forced to take less than ideal treatments by reason of economy? Have I had to wait long periods to access treatment? Is my treatment expensive? Can my treatment be customised to maximise the benefit for me? Have I suffered adverse effects and am I being adequately monitored? Surely outcome is a more important consideration than provenance? Can a medication costing $10 a year not be more effective than a medication costing $2000 a year or $20,000 a year?

ps. I am looking forward to my next dose so I can see if two grams of cysteine taken half an hour before the DMF reduces my side effects. This could be useful information.

I don't think your treatment is in any way bad, and yes to all your points. I couldn't agree more that what you are doing is right for you and maybe other brave sufferers.
But it has to be done with caution and careful dosing.....you are an inspiration, but with the best will in the world I could not put my hand on my heart and suggest to another sufferer that they should go down your route

I'm glad you keep us updated and give hope to others that haven't got access to Fumaderm or regular DMF treatments
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Bill Offline
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
#329
Wed-29-06-2016, 10:39 AM
Jim, successful treatment is a measure of outcome. I give no prescription for how it should be attained, only how it's success might be measured. I would add that if you are under care you should be following directions to the letter.
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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
#330
Wed-29-06-2016, 10:56 AM
(Wed-29-06-2016, 10:39 AM)Bill Wrote: Jim, successful treatment is a measure of outcome. I give no prescription for how it should be attained, only how it's success might be measured. I would add that if you are under care you should be following directions to the letter.

Five
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