[split] Dimethylfumarates and Psoriasis

[jiml]

Maybe different question then - before the pills started working - were there new patches coming out still?

J.

In my case no........... the patches just faded away slowly without any new ones appearing .... But that's just my experience we are all different and the drugs affect different people different ways .
Yes perhaps you need to increase the dose or if you feel things are improving stay on your 960 a day and see what happens I don't know how long you have been on 960 but if it's recent I would wait a bit before increasing .... But I'm sure Caroline will give you better advice on dosing
Stay strong it is working

[Caroline]

Maybe different question then - before the pills started working - were there new patches coming out still?

J.

In my case no........... the patches just faded away slowly without any new ones appearing .... But that's just my experience we are all different and the drugs affect different people different ways .
Yes perhaps you need to increase the dose or if you feel things are improving stay on your 960 a day and see what happens I don't know how long you have been on 960 but if it's recent I would wait a bit before increasing .... But I'm sure Caroline will give you better advice on dosing
Stay strong it is working  

Hello Joana,

Well this Jim has thrown me into a nice situation, , difficult to give advice.
You are on 8x120, that is a reasonable normal dose, a psoriasis acquaintance of mine has the same dose.
Still it always can go higher, but keep on checking your blood values !! that is important during the building up and consolidation phase.

I cannot speak of own experiences on patches, as with me the psoriasis patches always have been minimal, it was the PsA that brought me to this medication. Currently I am on the for me minimal dose of 5 or 6 x 120, and I feel that under some circumstances my feet hurt, then I have to increase a little for a number of days until it is gone.

As apparently Psorinovo seems to work for you quite well, I should stick with this dose, or still try it a little higher, there is no problem in doing that.

Cheers,
Caroline

[jiml]

Sorry Caroline I didn't mean to put you in an awkward position it's just that for Fumaderm Joane is over the maximum dose and I remembered you saying that Psorinovo can go higher.
But I think it would be wise to stay on the current dose for a short while longer before increasingg again.
And as Joane is funding this herself the higher the dose the more it's costing her ..

[Caroline]

This is a continuation of the introduction thread introduce myself of Deena.

thanks Caroline Jiml and Grizly Bear.

I have adjusted it Caroline, I'm female :-)
I find the dutch psorinovo forum/site verry useful I agrea, and I don't mind to pay for it, but it would be more usefull if the forum is more up to date, and it is more fun on a forum when there are more members on line.
I'm please to meet a fellow psorinovo user. I am curious if you also suffer side effects from it. for me it went wel for weeks. I also take reishi/ganoderma capsules and I didn't had side effects , 3 weeks ago I stopt taking the reishi capsules and the past 2 weeks I sufferd from flushings and hives. yesterday I started taking the reishi capsules again and the flushings finely stopt (do you cal it also flushing, when your head gets realy red, and hot?) I only suffer a little bit from the hives, but now I won't stop taking the reishi anymore. how much psorinovo do you take? Caroline? I have still the highest dose, I take 720mg a day. I hope to decrease the dose in march.

hope to hear from you about your experience.

gr D

Will answer you later on.
Now at work.

Hi Deena,
So I'm back finally from work and sports, now time to answer.

Great you're female, gives a bit more weight for us in the forum between the men.  

About the flushes, yes I have them too. Depending on the intensity it is only my head or even my whole body. No big deal however, it is harmless.
So you also have PsA just like me. I am also on 6x120mg a day. 6 pills. But you are mistaken that that is the maximum dose, in fact there is no maximum dose.
I guess your dermatologist  told that to you. But unfortunately we already know from many sources that dermatologists have hardly any knowledge on DMF and on psoriasis. Which is completely logical as it is an auto immune disease, so should belong to an internists work field.
So you can easily take the double dose, no pRobles. The only major thing that is important is keeping an eye on your blood values, specifically the lymphocyte may not get too low.

I am very interested on your reishi capsules. As they seem to compensate for the flushes and hives, although I do not exacly know what you mean by hives. (Ik gok even, is dat een soort van uitslag?)
I am certainly going to do some research on this reishi.

Hope to see you around more often, because indeed this is a fun forum, once you get a little bit at home.

Cheers,
Caroline

[Fred]

Do you want this as a new thread or are you happy with it here?

[Caroline]

Do you want this as a new thread or are you happy with it here?

For the time being happy over here Fred.
Don't know if Deena wants to start her own treatment thread.

[Fred]

Do you want this as a new thread or are you happy with it here?

For the time being happy over here Fred.
Don't know if Deena wants to start her own treatment thread.

OK but I did edit you post pointing her here as it pointed to the post above yours where Jim had posted.

Let me know if you want these last three post removed as they're not relevant.

[LadyBug]

Hello everyone again...

145 days on Psorinovo have passed quickly. Many things happened - good things - during that time.

I was on 1320mg/day whole December (600 mg morning / 360 mg / 360 mg evening), then I had a possiblity to go to a place that I could be exposed to sun for many hours. (Sun always helps me). And then all started - all things accelerated incredibly, after 20 days I was virtually totally clean with only little marks (I think I should upload some pictures... as for me this is unbelivable)! However disease used to be back after 1-2 weeks. This time it IS NOT BACK so far!
I am so excited that I am even afraid to tell you that, so it will not come back but so far so good.

story in the meantime: my dose I found probably too big for me, strange things started to happen - less flashes, diarrhea, loss of power, strong dizziness, very tired. I started to feel bad. I was already clean but afraid of psoriasis coming back so I tried to keep the dosis as high as possible. It started to be unbearable and I had it cut in half. And... after another month I am still almost clean! This is just incredible and unbelievable! I am getting sometimes 1 - 2 little spots coming out that I treat with Dermovate. Elbows I am touching and they are so small, totally clean that I cannot emjoy enough of them! They used to be like popcorn elbows and now I can wear short sleeves!

My dosis now is 3x240 mg (biggest Psorinovo pills, as they are also a bit cheaper per mg) and I keep my fingers crossed to be like this forever. Sometimes when I feel itchiness I am taking additional 120mg in the meantime. So far this works good, I am also thinking maybe lower the dose in a month or so and see what happens...

It looked like an improvement but so slow, after sun expose the improvement with Psorinovo was for me in 20 days like other 60!

Thank you all for every good word and help you were always ready to give. I will keep my treatment updated in this thread and also report soon.
I am very tired today sorry for my English if the story is hard to understand



J.

[jiml]

Joane what great news I'm so pleased for you .what a great feeling it is to be virtually clear . I am glad you stuck with it and I'm sure it will keep working for you .
Your story makes good reading there is nothing difficult to understand your  joy jumps off the page at us . An absolute delight to read
I know with psoriasis there is always the fear of it returning. In my case on Fumaderm I cut my dose down to 2x120mg tablets a day but it was to low and started coming back I have upped my dose to 3 tablets now and am just about clear again
Thank you for coming and passing on the good news and I hope you will keep updating even if it's to say " I'm still clear"
Enjoy life in short sleeves and summers without flakes
Jim

[LadyBug]

Actually my friend helped me to put pics to compare my results.
Below this is example how my popcorn-elbows were changing...