[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: Fumaderm

You may also be interested in Caroline's thread about Dimethylfumarates here: Dimethylfumarates and Psoriasis

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

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]

Hi Caroline,

Hi John,

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.

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.

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.

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.

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

Hi Caroline,

Hi John,

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.

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.

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.

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.

Thanks & all the best,

John

Gladly done.
Caroline

[Caroline]

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.

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 [Group Specific]
- 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 !!  

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 !

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

Thanks again & all the best,

John

[jiml]

I have read a lot on here about Fumaderm but it seems if I read it right most people have been started on full strength Fumaderm

When I started I was put on this regime

FAE are taken in gradually increasing doses. During the first week of treatment you will likely receive one tablet daily of the low-strength preparation “Fumaderm® Initial”. The second week of treatment involves “Fumaderm® Initial” one tablet twice daily. The third week involves “Fumaderm® Initial” one tablet three times daily. After this, you will commence the “Fumaderm® Full Strength” tablets, beginning with one tablet daily for the first week, then weekly increases in the dose to a maximum of six tablets daily of “Fumaderm® Full strength”. This dose may need to be maintained for a few weeks until your psoriasis clears completely. The dose of FAE will then be gradually reduced to the lowest dose that keeps your psoriasis clear, or nearly clear.
It may be worth noting as by gradually increasing the dose you minimise the side effects.
I still got them but not severely
Hope that helps

[Caroline]

Same with me, only less "hidden"

30 mg, 1 week
60 mg, 2nd week
120 mg, 3rd week
150 mg
180 mg
210 mg
Etc,
Until getting effective, which was at 6x120
Then for the same duration as the build up, keeping this steady,
Then gradually lowering until symptoms reappear,
Then one step up.

[Fred]

Does taking that amount of pills per day make you feel sick?

I know it's not the same as MTX but I remember they used to make me feel sick just the thought of taking them, I hate taking pills 1 is ok but taking a few a day could put me off.

[jiml]

Fred I take 2 x120mg tablets after breakfast and 2 x120mg tablets after my evening meal
No contest over methotrexate I used to dread Mondays and having to take 10 at a time

[Caroline]

Does taking that amount of pills per day make you feel sick?

I know it's not the same as MTX but I remember they used to make me feel sick just the thought of taking them, I hate taking pills 1 is ok but taking a few a day could put me off.

No, not at all. I have three in the morning and two in the evening. (120's), don't feel anything from them, except from the occasional flushes.
When I took MTX I felt really sick, the feeling that my body was attacked/poisoned. Indeed that became a mental barrier taking them. I could, at a certain point, not allow this stuff anymore in my body.

[Fred]

Fred I take 2 x120mg tablets after breakfast and 2 x120mg tablets after my evening meal
No contest over methotrexate I used to dread Mondays and having to take 10 at a time

No, not at all. I have three in the morning and two in the evening. (120's), don't feel anything from them, except from the occasional flushes.
When I took MTX I felt really sick, the feeling that my body was attacked/poisoned. Indeed that became a mental barrier taking them. I could, at a certain point, not allow this stuff anymore in my body.

That's comforting to know.