[split] from Fumaderm thread

[Johnmac]

*NOTE:
This thread is made up from posts on a Fumaderm thread, and it was decided it would be better to have it's own thread. You can find the original Fumaderm thread here: http://psoriasisclub.org/showthread.php?tid=132

You may also be interested in Caroline's thread about Dimethylfumarates here: http://psoriasisclub.org/showthread.php?tid=760

The first post in this thread is the one below from Johnmac, members are welcome to start another thread about Fumaderm if they wish.

---

Hi Caroline,

I just tumbled on your post (one of the few English language mentions on Psorinvo online).

How are you going now? Has Psorinvo done something?

How does one begin with Psorinvo? I live in Cambodia & Thailand, so no doctor here would have heard of it. I'll have to dose myself. Where can I find out about appropriate dosing?

Do you get yours from Mierlo-Hout in the Netherlands? I contacted them, & they said they couldn't give me prices till I'd told them what dosage & how many. (They're a compounding pharmacy.)

Finally, is dimethylfumerate the only ingredient in Psorinvo? (Mierlo-Hout didn't answer that question.)

Thanks & all the best,

John

(Fri-25-11-2011 19:57 PM)Caroline Wrote:  Oww....
Can't help it, so must react to Paul and Snookams (what a name)..
I am not on Fumaderm but on an alternative called Psorinovo.
Psorinovo is also, but then unlike Fumaderm without additives. Would make it even worse for your stomach and intestines if.... it was not enteric coated and slow release, but it is....
Which means that it will not be released in the stomach and is slowly released in the intestines. The effect of this is that:
1) almost no cramps, less diarrhea
2) limited flushes, I have them by day about once a week (20 minutes) and sometimes at night
3) higher doses than 6x120mg are possible

Psorinovo is also, like fumaderm I guess, based on the research of dr schweckendieck, but improved by dr L. Kunst into the current form.
Currently a scientific investigation is started in the large medical centers in holland, initiated by the patients community already using Psorinovo, in order to place it better on the map as a very well working treatment to beat psoriasis.

[Caroline]

(Thu-13-12-2012 07:54 AM)Johnmac Wrote:  Hi Caroline,

Hi John,

Quote:I just tumbled on your post (one of the few English language mentions on Psorinvo online).

How are you going now? Has Psorinvo done something?

It's perfect, but no-one apparently believes me. Where my future looked quite bad a number of years ago, because of the PA, I had to quit running and was at a certain point on MTX, I met with a doctor (not a derm) and he directed me to Psorinovo. From that moment on it went better. And now I have the lowest psoriasis score on this forum. I still cannot run, but condition is great because of spinning that goes very well.

Quote:How does one begin with Psorinvo? I live in Cambodia & Thailand, so no doctor here would have heard of it. I'll have to dose myself. Where can I find out about appropriate dosing?

It is a very gradual build-up process, a slow slope of increasing dose, until it begins to work. Then you have a plateau phase that is as long as the build-up phase, and then there is a decrease phase until the first signs pop back up.. There you stop decreasing, go a bit higher and stay on that level.
You can ask at the Dutch website for more info.
You shall not dose yourself unattended by a doctor! There are a number of substances in your blood that have to be measured in advance and during the process, just for surety. They, the patients group from the website does not want any problem to appear with Psorinovo because of scientific research.

Quote:Do you get yours from Mierlo-Hout in the Netherlands? I contacted them, & they said they couldn't give me prices till I'd told them what dosage & how many. (They're a compounding pharmacy.)

Yes, that is the only place you can get it. They distribute all over the world.
If you ask a schedule from one of the Dutch doctors connected, and discuss this with your own doctors, you can order the right dosage.
Btw starting increments always go from 30mg/day. I am on 6x120mg.

Quote:Finally, is dimethylfumerate the only ingredient in Psorinvo? (Mierlo-Hout didn't answer that question.)

Yes. Because of this the dosage can be incremented to quite high levels without significant problems.

Quote:Thanks & all the best,

John

Gladly done.
Caroline

[Johnmac]

Caroline,

Thanks for the fast & comprehensive reply!

Seems like it's a bit of a process - but that's okay, often the case with anything worthwhile.

Point taken about doctors, thanks.

So how is your proriasis now, exactly? What percentage improvement would you give it, & how long did that take?

Any side-effects of note?

I found a price list in the end. Psorinvo 120mg costs 75 euros for 100 capsules. If I took 6 x 120mg p day (for example) that would cost me 150 euros a month, or $US195 monthly.

That's very expensive. I guess there's no cheaper way?

Thanks again & all the best,

John

(Thu-13-12-2012 10:17 AM)Caroline Wrote:  

(Thu-13-12-2012 07:54 AM)Johnmac Wrote:  Hi Caroline,

Hi John,

Quote:I just tumbled on your post (one of the few English language mentions on Psorinvo online).

How are you going now? Has Psorinvo done something?

It's perfect, but no-one apparently believes me. Where my future looked quite bad a number of years ago, because of the PA, I had to quit running and was at a certain point on MTX, I met with a doctor (not a derm) and he directed me to Psorinovo. From that moment on it went better. And now I have the lowest psoriasis score on this forum. I still cannot run, but condition is great because of spinning that goes very well.

Quote:How does one begin with Psorinvo? I live in Cambodia & Thailand, so no doctor here would have heard of it. I'll have to dose myself. Where can I find out about appropriate dosing?

It is a very gradual build-up process, a slow slope of increasing dose, until it begins to work. Then you have a plateau phase that is as long as the build-up phase, and then there is a decrease phase until the first signs pop back up.. There you stop decreasing, go a bit higher and stay on that level.
You can ask at the Dutch website for more info.
You shall not dose yourself unattended by a doctor! There are a number of substances in your blood that have to be measured in advance and during the process, just for surety. They, the patients group from the website does not want any problem to appear with Psorinovo because of scientific research.

Quote:Do you get yours from Mierlo-Hout in the Netherlands? I contacted them, & they said they couldn't give me prices till I'd told them what dosage & how many. (They're a compounding pharmacy.)

Yes, that is the only place you can get it. They distribute all over the world.
If you ask a schedule from one of the Dutch doctors connected, and discuss this with your own doctors, you can order the right dosage.
Btw starting increments always go from 30mg/day. I am on 6x120mg.

Quote:Finally, is dimethylfumerate the only ingredient in Psorinvo? (Mierlo-Hout didn't answer that question.)

Yes. Because of this the dosage can be incremented to quite high levels without significant problems.

Quote:Thanks & all the best,

John

Gladly done.
Caroline

[Caroline]

(Thu-13-12-2012 10:43 AM)Johnmac Wrote:  Caroline,

Thanks for the fast & comprehensive reply!

Seems like it's a bit of a process - but that's okay, often the case with anything worthwhile.

Yes, it is.

Quote:Point taken about doctors, thanks.

So how is your proriasis now, exactly? What percentage improvement would you give it, & how long did that take?

It was:
- thick and painful finger joints, and foot joints.
- operating a computermouse was not possible.
- walking more than 1 km was undoable because of the pain.
- running completely impossible.
- driving a car was very inconvenient, so I switched to the motorcycle (sorry Fred ).
- very stiff in the mornings
- physiotherapy necessary
- thick psoriasis on my scalp around the hairlines.

Now:
- very slim fingers.
- almost no pain, with desk and mouse work, depends a little on the weather type.
- can walk for at least 12 km without significant pain.
- no psoriasis on my scalp anymore, see for yourself http://psoriasisclub.org/showthread.php?tid=911
- running still impossible, switched to spinning.
- driving a car to the south of France is no problem anymore.
- no physiotherapy necessary anymore.
- still driving a motorcycle, because it is fun ! (sorry Fred )

In other words... I am alive !!

Quote:Any side-effects of note?

yes:
- lower white blood cells (therefore always under treatment of a doctor to keep an eye on that), but no problems because of that.
- lightly instable intestines
- sometimes a flush, I turn completely red !

Quote:I found a price list in the end. Psorinovo 120mg costs 75 euros for 100 capsules. If I took 6 x 120mg p day (for example) that would cost me 150 euros a month, or $US195 monthly.

That's very expensive. I guess there's no cheaper way?

Indeed, it is not cheap, and there is no cheaper way.
But my health and condition is worth it. The time I was on MTX was really the worst. Luckily in the Netherlands it is within the insurance, so part of it is paid for me.

Regards,
Caroline

Quote:Thanks again & all the best,

John

[Bill]

I purchased a kilogram of 98% DMF from a chemical supplier in Shanghai at a cost of 160 USD delivered. Customs opened and sampled the package, but were unable to seize it as it is not a registered therapeutic nor is it subject to importation bans in Australia (or maybe they just stuffed up).

A word of caution though: It is a very strong drug with the potential for unpleasant side effects. And dont take it with bananas. I had a headache for 14 hours the last time I did that, and there wont be a next time.

Good luck,

Bill

[Caroline]

(Fri-14-12-2012 11:02 AM)Bill Wrote:  I purchased a kilogram of 98% DMF from a chemical supplier in Shanghai at a cost of 160 USD delivered. Customs opened and sampled the package, but were unable to seize it as it is not a registered therapeutic nor is it subject to importation bans in Australia (or maybe they just stuffed up).

Hi Bill,

So you now have the pure DMF. Indeed there are no bans anywhere, as it is a normal substance which we all have in our bodies, and which is already so old that it cannot be patented by some moron.

Bill Wrote:A word of caution though: It is a very strong drug with the potential for unpleasant side effects. And dont take it with bananas. I had a headache for 14 hours the last time I did that, and there wont be a next time.

Good luck,

Bill

Here you are exactly pointing at the disadvantage of using DMF in its pure form. Already 40 years ago dr. Schweckendieck did a lot of research on this.
From this research it follows that it is absolutely not good to use DMF in it's pure form. You can get heavy stomach-aches and the pure concentration of it in your intestines are not nice for them.
This is also why Fumaderm has additives to prevent the problems in stomach and intestines.

Therefore in the Netherlands, dr. Kunst, developed Psorinovo. A Fumaric Acid ester, in the form of pills that are coated so they will pass your stomach without doing harm there, and in a slow release version so during the day/night it will gradually release the DMF. This appears to be a very nice approach as is revealed by research of dr. Kunst himself. So here the Netherlands we are already aware that dimethylfumarates work very well for most of psoriasis patients (not all !. I just read a mail from someone with whom it does not work).

Caroline

[Bill]

Hi Caroline,

I take my DMF with a meal and soy milk, and I think that the side effects are at the mild end of the spectrum, from what I have read of people taking formulations like fumaderm.

Maybe I am at the end of the Bell Curve, but I suspect that the side effects might be post absorption rather than pre absorption, so measures like enteric coatings and slow release formulations will only do so much.

In any event, Australian laws would prevent me from importing Fumaderm (not that I am complaining about something which is 2% of the cost), and if DMF is approved for MS therapy, I doubt if I will be able to import that either. Maybe I should stock up.

I Thank you for your informative posts. I have been taking DMF for 2 1/2 weeks now and I am finding it to be very effective. The side effects, apart from the headaches, have been annoying but bearable, and I have noticed that my sense of taste and smell have improved.

Kind regards,

Bill

[Bill]

An update.

I am now five weeks into treatment with DMF (240 mg three times daily with food and soy milk). I missed about four doses, mainly due to headaches. Side effects have abated, but the most irritating thing is that with my changed taste I find soy milk revolting (I have almost cut out wheat and dairy as both exacerbate my arthritis, so these things are not options for me at present). I did consider putting the DMF in enteric capsules prior to the side effects abating. On one occasion I chewed the crystals and held them in my mouth for about ten minutes before swallowing them and washing them down with soy milk. Two things followed: A nasty headache and a sore mouth, though the only thing I could see was a small red patch in the centre of my tongue. I guess this shows that DMF can be a local irritant and that the larger cyrstals eaten with food are absorbed more slowly.

The result has so far been good, with plaque area declining from over thirty percent to under twenty percent of body surface area. Overall plaque activity has declined by over ninety percent. I use creams on my shins, wrist, face and the back of my neck a few times weekly (previously daily to all plaques). I am also getting some full body sun exposure for twenty minutes twice a week, and I am swimming in the ocean at least weekly. The arthritis has been slower to respond, but I am no longer taking nsaids (previously ibuprofen 400mg twice daily with 500mg paracetamol).

From what I have read, the full effect of the DMF should be apparent in about another three to seven weeks. So far so good.

[Bill]

An update. I am eight weeks into treatment with DMF. Plaque coverage has declined from around 40% to below 15%. PASI has declined from 15-20 to ~1.6. The arthritis is improving, and while I am more comfortable on no analgesics than I was prior to DMF, I have decided to take 400 mg ibuprofen and 500 mg paracetamol at night. Side effects have reduced greatly, with only a couple of uncomfortable episodes weekly. The most resistant plaques have been on my shins and the back of my neck, but even these plaques are reducing. I am applying a tar based ointment to all remaining plaques as I feel it is beneficial. I continue to swim in the sea and get sun exposure weekly. I doubt that I will be able to clear my skin within another month as I suspect that I will still have at least 3% coverage, but I am hopeful that I may be clear within eight weeks.

[Fred]

(Wed-23-01-2013 09:28 AM)Bill Wrote:  An update. I am eight weeks into treatment with DMF. Plaque coverage has declined from around 40% to below 15%. PASI has declined from 15-20 to ~1.6. The arthritis is improving, and while I am more comfortable on no analgesics than I was prior to DMF, I have decided to take 400 mg ibuprofen and 500 mg paracetamol at night. Side effects have reduced greatly, with only a couple of uncomfortable episodes weekly. The most resistant plaques have been on my shins and the back of my neck, but even these plaques are reducing. I am applying a tar based ointment to all remaining plaques as I feel it is beneficial. I continue to swim in the sea and get sun exposure weekly. I doubt that I will be able to clear my skin within another month as I suspect that I will still have at least 3% coverage, but I am hopeful that I may be clear within eight weeks.

Thanks for taking the time to update this thread Bill
I wish a few more would come back and tell us how they are doing, as it's helpful to others.