[split] Dimethylfumarates and Psoriasis

[LadyBug]

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

[LadyBug]

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.

[jiml]

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?

[Caroline]

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.

[Bill]

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.

[Caroline]

Very interesting experiments, with very interesting conclusion you always do Bill.
I also admire the carefulness you do this with.

[Bill]

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.

[jiml]

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

[Bill]

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.

[jiml]

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.