Psoriasis support

Author

RAPTIVA

Peter Mitterocker

2004-10-10, 7:07 am

Hi, Is anyone using Raptiva.. I would like to hear from anyone using it and
its effects and any side effects anyone may have had. I have had Psoriasis
for 27 years but lately it has become quite aggressive and now affects 75%
of my skin and is increasing.

LOcoeng

2004-10-10, 7:09 pm

> I would like to hear from anyone using it and
>its effects and any side effects anyone may have had.

I used Raptiva for 6 weeks at injection 7, I had what THEY called a severe
flair, I would call it a castosrophic. I went from 20% P to 85% coverage in
five minutes with what the Derm called P like rash. It is now 8 weeks since
stopping Raptiva the rash if you will is down to 50% coverage. The makers of
Raptiva, Gentech said at 8 weeks Raptiva is down to 30% in your system.
Hopefully in a few more weeks this garbage will be entirely out of my system
and the Rash my recede. Right now the Derm has me on Cyclosporine (brand name
Neoral) it is helping a little. The possible side effect worry me some. Good
Luck with Raptiva, however you may want to try something else.

Ron

Domie Loorie

2004-10-13, 7:10 pm

Peter Mitterocker schrieb:
> Hi, Is anyone using Raptiva.. I would like to hear from anyone using it and
> its effects and any side effects anyone may have had. I have had Psoriasis
> for 27 years but lately it has become quite aggressive and now affects 75%
> of my skin and is increasing.
>
>
My body was covered over 80% with Psoriasis. I couldn't go to the light
therapy (UVB) because I developped a severe light allergy. Since the end
of July I get Raptiva, one of these new biologicals. In the first eight
weeks I had no positive effects by this medicament. But there were no
side effects after all. Now I have to say that my skin becomes better,
no scaling anymore, patches less red. I can not say what's happen, when
I have to stop the treatment.

Domie Loorie

2004-10-16, 4:07 am

Son Nguyen

2004-10-17, 2:08 am

I tried it and got a huge flare up, much worse than when I started or I've
ever had it. My P was so bad that I wanted/thought that I should be
hospitalized since the itching, scaling, redness and heated skin was so bad
I could not stand it. Raptiva has turned me off to the whole biologics
thing... I am actually back to the old standard P treatments (and others)
and my P is getting much under control.

"Peter Mitterocker" <prm23kalmia@aanet.com.au> wrote in message
news:4168ff76$0$3606$61c65585@un-2park-reader-02.sydney.pipenetworks.com.au.
...
> Hi, Is anyone using Raptiva.. I would like to hear from anyone using it
and
> its effects and any side effects anyone may have had. I have had Psoriasis
> for 27 years but lately it has become quite aggressive and now affects 75%
> of my skin and is increasing.
>
>

RadioRedo

2004-10-17, 2:08 am

"Peter Mitterocker" <prm23kalmia@aanet.com.au> wrote:

>Hi, Is anyone using Raptiva.. I would like to hear from anyone using it and
>its effects and any side effects anyone may have had. I have had Psoriasis
>for 27 years but lately it has become quite aggressive and now affects 75%
>of my skin and is increasing.
>
Peter,
Today I took my 33rd shot. I'm now about 95% clear but continued
improvement started leveling off about three months ago, and I haven't
seen any further improvement. Since it looks like I won't totally
clear, I've decided to slowly reduce my dosage to zero over a
two-month period to avoid possible flair up. Then I'll go back to the
conventional topicals. I haven't had any negative effects. During the
first three months the stuff was really amazing.
Bill

JXStern

2004-10-17, 7:10 pm

On Sun, 17 Oct 2004 06:14:46 GMT, RadioRedo <wfw@mindspring.com>
wrote:
>Today I took my 33rd shot. I'm now about 95% clear but continued
>improvement started leveling off about three months ago, and I haven't
>seen any further improvement. Since it looks like I won't totally
>clear, I've decided to slowly reduce my dosage to zero over a
>two-month period to avoid possible flair up. Then I'll go back to the
>conventional topicals. I haven't had any negative effects. During the
>first three months the stuff was really amazing.

Glad to hear of your success.

Hope you can post as you do the taper-off thing, I'm interested in
hearing how that goes.

Best wishes,
J.

RadioRedo

2004-10-19, 11:10 am

RadioRedo

2004-10-22, 10:08 pm

meowka

2004-10-27, 7:11 pm

This is really interesting. It seems like the ones who have little or
no success with Raptiva have success with Enbrel (and vice versa).
Maybe there's something to that.

I was on Enbrel for almost two years, and was on the double-dose for
most of that time. Enbrel made my quality of life better, but did not
clear me at all. It just made the P easier to live with. It helped
the pain, burning and tightness, but no clearing.

I have JUST started Raptiva. I took my first dose last Saturday and
will take my second one this Saturday. So, I am so new to it that I
cannot really compare the two at this point. So far I do not seem to
have any side effects. I am having sinus-type symptoms, but that
could be a bug that is going around work anyway.

I will say that to those of you pondering Enbrel, I would highly
recommend giving it a go. I had absolutely ZERO side effects while
taking it, even at the double dose.

Anyway, I will update when I have more to add. It's still early in
the Raptiva treatment for me. If it does not work, I will likely
switch back to Enbrel, just for the relief it gave me.

RadioRedo

2005-09-24, 1:32 pm

Here is an update. I tapered off the Raptiva shots to one last tiny
squirt over a one month period. I was planning on switching to
conventional topicals after that but got lazy. So, my Psorisis slowly
came back to its original condition in about seven months, just as I
expected. No flare ups, just a slow return. Raptiva was a fantastic
treatment for me. I just didn't want to stay on the stuff for the rest
of my life. I need to get busy treating again. I'll probably use the
Dovonex/Cortisone combo that my doctor recommends.

JXStern <JXSternChangeX2R@gte.net> wrote:

>On Sun, 17 Oct 2004 06:14:46 GMT, RadioRedo <wfw@mindspring.com>
>wrote:
>
>Glad to hear of your success.
>
>Hope you can post as you do the taper-off thing, I'm interested in
>hearing how that goes.
>
>Best wishes,
>J.

RadioRedo

2005-09-24, 1:40 pm