[split] Dimethylfumarates and Psoriasis

[jiml]

We (with my doctor) are thinking to wait now a little longer, 720mg daily is quite big regarding to experiences of other people... I am just so scared and so afraid some new patches would come out... Nothing EVER helped me well, only one time - bilogical (Humira) - I was totally clean within 10 days after 1st injection, I could tell it was disappearing in front of my eyes.

I know I have to be mentally stronger, however my self esteem is bad. My experiences with MTX / ointments / lamps are really bad too...

Now: 7th week, seems better, no significant improvement in terms of size of plaque / patches so far. I note them thinner though. (Or I want to see them thinner )

J.

Joane I know it seems to be taking forever, but stay strong I'm sure it is starting to work for you ....
It was never going to work as fast as Humira unfortunately but when it works it will be a long term solution for you .... As soon as you see some real improvement your self esteem will begin to rise.... I well remember having low self esteem it's not very nice and no one should feel that way
As you say week 7 and noticing slight improvement .... Trust in the drug it's worth sticking with it a while longer ..... You will not be sorry

[LadyBug]

70th day today...

I am now on 720 morning + 240 evening... blood tests perfect, seem not affected...
I feel nauseas sometimes and usually 4 hours after taking pill first symptoms of DMF, then 8h after (!) - stomachache...

I have ordered new pills (240mg, as a little cheaper). One night I was supposed to take 3x120 and I took 3x240... Crazy feeling like burning from inside, diarrhea, strange stomachache also, however it seemed like helped a lot in the morning I saw some significant change.

Right now I took pictures - compared before and after and ... almost no luck, seems exactly the same (except its thinner)....

J.

[jiml]

70th day today...

I am now on 720 morning + 240 evening... blood tests perfect, seem not affected...
I feel nauseas sometimes and usually 4 hours after taking pill first symptoms of DMF, then 8h after (!) - stomachache...

I have ordered new pills (240mg, as a little cheaper). One night I was supposed to take 3x120 and I took 3x240... Crazy feeling like burning from inside, diarrhea, strange stomachache also, however it seemed like helped a lot in the morning I saw some significant change.

Right now I took pictures - compared before and after and ... almost no luck, seems exactly the same (except its thinner)....

J.

Hi Joane
When you say your psoriasis is thinner do you mean flatter? Are you still making lots of flakes or is that getting better.
How many days have you been on the higher dose

[Caroline]

Being one 6x120 feels to me ok, and a sudden accidentql increase may give an effect according to Bill.
But you are now on 8x120 ? Now change should be visible. Is there a possibility for a bit slower increase. Seen to the accidental increase you are almost there.
The diarrhea is indeed one of the possible drawbacks at this higher dose.

Caroline

[Bill]

Hi Ladybug,

Have you noticed a decrease in disease activity such as reduced flaking? I have noted the single large doses to be much more effective than more frequent smaller doses. But the higher doses do have more intense side effects, although remember that I take DMF pure in granular form. Typically the symptoms begin with an unpleasant alteration of taste sensation followed shorty after by a serous nasal discharge. Within about twenty minutes of this I get a prickly heat over my body and an unpleasantness in my gut. Nothing is acutely painful, but I take my dosage at night with a big meal and then lie down for a few hours.

720 mg is a big single dose to take. Are you sure your specialist wanted you to take 3*240 mg and not 3*120 mg? I would not doubt its efficacy, but the balance seems a bit unusual.

Cheers,

Bill

[Caroline]

720 mg is a big single dose to take. Are you sure your specialist wanted you to take 3*240 mg and not 3*120 mg? I would not doubt its efficacy, but the balance seems a bit unusual.

Cheers,

Bill

Bill,

Remember Joana is on Psorinovo. So anyway it is the slow release factor that prevents problems. Indeed it is a large dose, but I take the same dose, with only minor problems.

Of course your question is valid, is this indeed already the level Joana has. I also thought it to be very quickly, but I also know that time flies.

Caroline

[LadyBug]

70th day today...

I am now on 720 morning + 240 evening... blood tests perfect, seem not affected...
I feel nauseas sometimes and usually 4 hours after taking pill first symptoms of DMF, then 8h after (!) - stomachache...

I have ordered new pills (240mg, as a little cheaper). One night I was supposed to take 3x120 and I took 3x240... Crazy feeling like burning from inside, diarrhea, strange stomachache also, however it seemed like helped a lot in the morning I saw some significant change.

Right now I took pictures - compared before and after and ... almost no luck, seems exactly the same (except its thinner).... Bad thing is that in same places sometimes I am getting new patches, that are new fresh, thick and very itchy (always been like this - itchiness is terrible)

J.

Hi Joane
When you say your psoriasis is thinner do you mean flatter? Are you still making lots of flakes or is that getting better.
How many days have you been on the higher dose

all patches are almost the same in sizes, exactly in the same places, some are exactly thinner, but on picture looks almost the same still...
I am 7th day now on higher dose. (total 720 / 240 day) but Im thinking to maybe change it to 600 / 360 as after 4 hours I feel very weak, then 8h after taking stomachache... so maybe split it more to the night... After that mistake night I just felt like higher dosis does the job better than 2 smaller... may be yes may be not...

J.

[LadyBug]

Hi Ladybug,

Have you noticed a decrease in disease activity such as reduced flaking? I have noted the single large doses to be much more effective than more frequent smaller doses. But the higher doses do have more intense side effects, although remember that I take DMF pure in granular form. Typically the symptoms begin with an unpleasant alteration of taste sensation followed shorty after by a serous nasal discharge. Within about twenty minutes of this I get a prickly heat over my body and an unpleasantness in my gut. Nothing is acutely painful, but I take my dosage at night with a big meal and then lie down for a few hours.

720 mg is a big single dose to take. Are you sure your specialist wanted you to take 3*240 mg and not 3*120 mg? I would not doubt its efficacy, but the balance seems a bit unusual.

Cheers,

Bill

it's been increased step by step, I was with 360/360 in the meantime, however after that night with mistake I felt larger dosis better, we changed gradually to take more in the morning and slightly less for the night for better sleep. As I was waking up at night.
so we went during 2 weeks with 120 mb increase and in same time change of dosis to keep more impact in the morning, as for me it seems to be easier to deal with during the day ( I can eat more , drink etc)...

on 720/240 I am on 7th day today. whats funny most side effects I am getting 8(!) hours after taking pills in the morning.

No headaches or nausea anyone? I am not sure what is causing this. Might be new birth control pill but I am not sure now.

J.

[jiml]

Hi joane I'm not sure with Psorinovo but the fact that it is slow release may be why you are getting delayed effects caroline will know better as she is on psorinovo.

As you say the nausea May well be caused by something else ( having never taken a birth control pill I don't know what effects they have )

It's difficult to know when it will start reducing your plaques but you must remember you have upped your dose so quickly I think your body may be struggling to adjust. It may be worth missing a dose to let your body take stock of what's happening . I'm beginning to think that you are going to fast for your body .... I don't know if anyone will agree but your side effects are getting a bit extreme and if the nausea is connected it may pay to miss a dose..
Just an opinion Joane but might be worth considering

[LadyBug]

times passes fast, it has been 10 weeks since I started, weekly increasing I am up to this now... You think it might be too fast?
It is hard to find any doctor to know anything about this drug... So far she is controlling my blood and body, but not really sure about the dosis. We were going mostly as Fumaderm scheduled, just 2 times / day instead of 3.
the schedule was 30 / 60 / 90 / 120 daily for each week, t hen increase of 120 every week...

J.