ANY ONE ON REPTIVA

[reneet]

I'VE BEEN ON ENBREL SINCE JUNE 2. AND STARTED SORIATANE SEPT. 1ST. SO I'M ON BOTH NOW THEY ARE TAKING ME OFF ENBREL AND PUTTING ME ON REPTIVA AND SORIATANE. DOES ANYONE KNOW ANYTHING ABOUT REPTIVA. IS ITANY GOOD.

THANKS EVERYONE, RENEE

[RichJ]

hi renee,
sorry i can't help much because i never used them. some day i will im sure. some one will come throught and help you. i wish you the best

have a good night all

richard

[nsf103]

Hi,

As with any treatment, what worsk for some doesn't work for others. Everything is a crap-shoot of sorts! I have been on Raptiva for 11 weeks now and it has been my miracle. I was covered on my palms and feet with PPPP. I am now about 95% clear and loving life. I had previously failed on Enbrel, Methotrexate, Cyclosporine, and Amevive.Raptiva's cleared me up with side effects only lasting the first 2-3 weeks. As with any treatment, you must trust your derm and he checks your blood each month just in case your body can;t handle the medication.

Best of luck to you!

Nicole

[Julietzzz]

Hi,
I was on Enbrel, then switched to Raptiva. It did not work for me.
Please be cautious with this drug. For some it has worked miracles.
I got a VERY inflamed left knee and my P got worse. I only took it a few times, but I am convinced Raptiva caused me problems. I still have not recovered and it has been several months. If you start to have pain and swelling in your joints call your Dr. ASAP.....
Best of Luck.
Juliet

[reneet]

THANKS TO ALL OF U THAT WROTE ME IT HELPED ALOT. I'M GLAD TO NO THERE ARE OTHER PEOPLE I CAN TALK TO THAT UNDERSTSAND.

RENEE

[rosy3939]

I have had Raptiva sitting in the fridge for the past four weeks. During that time I have either been traveling or fighting off this lousy cold. I don't want to start this drug until I have gotten rid of it. I am hoping to start it later this week. I am currenly on MTX and just waiting to start the Raptiva.

I have heard all the side effects, and possible terrible rebound when I stop but I am willing to take the chance and hope and pray nothing terrible happens. I need relief now and as with everything we do in life there are chance and risks and we have to make educated decisions.

Mitch

[Kimbercat]

Hi Renee,

You can also do a search of the message boards using the key word "raptiva" to find quite a few posts from others who have used this drug, and had both good and bad experiences with it. Good luck, and I hope it works well for you if you decide to try it. :)

[anneriedel65]

My boyfriend is on reptiva and he has been taking it for 3 months. He just stopped because he is loosing his hair (alot) and his psoriasis is getting worse.

[MikeK]

My boyfriend is on reptiva and he has been taking it for 3 months. He just stopped because he is loosing his hair (alot) and his psoriasis is getting worse.


Hi anneriedel65,

I'm very worried about your boyfriend. He needs to see his doctor. A.S.A.P. People should not just stop taking Raptiva unless they have a backup medication plan in place. Raptiva is notorious for causing psoriasis to get much, much worse when people stop taking it for any reason. Several people who have stopped taking Raptiva have developed a very serious form of psoriasis called called erythrodermic psoriasis. (You'll often see erythrodermic psoriasis abbreviated as e-dermic psoriasis here.) Here's a link to the NPF's description of it: http://www.psoriasis.org/about/psoriasis/erythrodermic.php. Erythrodermic psoriasis can be fatal. Hopefully, you boyfriend won't go e-dermic, but I cannot emphasize enough how serious his situation is. HE NEEDS TO SEE HIS DERMATOLOGIST. A.S.A.P.

Here's the links to some pervious discussions about Raptiva:

http://www.psoriasis.org/forum/showthread.php?t=28822&highlight=e-dermic

http://www.psoriasis.org/forum/showthread.php?p=265556&highlight=significantly#post265556 (This post includes a link that will take you to many discussions about Raptiva; please follow all of the links.)

I hope this helps.

Good luck.

I hope your boyfriend feels better soon.

Please keep us posted and please let us know if you have any other questions.

Mike

[pipegirl]

Hi:

I took Raptiva for almost a year. The drug did work great for me with few side effects. What no one told me was that the drug would eventually quit working. Well, it did and the notorious horrid flare up did indeed rear it's ugly head. I mean at a rapid pace too. One day there was clear skin and the next it was covered with small red bumps that spread and spread. I was even on MTX at the time. I am now fighting the flare up and starting a new med.

I am not saying don't try Raptiva.....just be prepared if it quits!

Piper

[Imac101]

I have tried to do a search on Reptivia and the only site I get is yours. My doctor is wanting to put me on this drug also. I am on humeria now. My palms of my hands are cracked and the soles of my feet are just starting. I have notice that the side of my foot is swollen and hurts when I walk. This weekend on the same side my knee feels like it need popped and it will give out. I can stand the ugly site. I would just like some relieve of the itching. Thanks for any help.

[rapidfire]

The drug is called 'Raptiva' not 'Reptivia' which would explain why you can't find anything about it. I was on Raptiva a couple of years ago for 24 weeks and unfortunately it had no effect whatsoever. I then went straight on MTX to try to avoid a flare & sure enough I didn't get one. MTX didn't help me either though:(. Goodluck!

[RichJ]

hi imac101,
im sorry that i can't help much but welcome to the p family. you have meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

try and have a good day all

richard

[nancy0105]

I just recently stopped taking raptiva, about 1 month ago. I was on it since May of 07, so over a year. I had good results with it until about a month ago, so my doctor decided it wasn't working anymore, so she will start something else. My whole body broke out like never before. I didn't want to leave the house.. Anyway, I just started cyclosporine last week. Doc finally gave me a steroyd shot to calm the rash down because the new drug probably won't work for a few weeks.
As far as Raptiva, I think it worked great for a while. The only side effect I had was on the day after my first shot, I got flu like symptoms and felt like crap for 2 days. Since then... nothing.

[terri1020]

I was on Raptiva for close to a year. It was my miracle drug and it cleared me 100% for the first time in over 40 years. I developed a urinary tract infection and skipped a dose. Everything was fine, I was still clear. I completed my antibiotics and went back on Raptiva. The UTI's kept coming and I seemed to be resistant to different antibiotics, so the doctors told me to stop the Raptiva (because of the imune supressing) and clear up the UTI's.I stopped the Raptiva cold-turkey and watched my skin go into the biggest flare I have ever experienced. I went from plaque to glutte (sp?) psoriasis. I am now covered from head to toe. Doing oatmeal baths, wrapping in seran wrap where I can and moist gauze on the torso. I can't stand clothing on my skin. I am burning, itching and feel like millions of bugs are crawling on me.

So, yes, Raptiva was my miracle drug, but at what cost? I am now miserable and covered in angry red spots. Still, I wouldn't trade those eleven months of clear skin! I am seeing a specialist for the UTI's next week and hope to go back on Raptiva when I get the all clear. The key was to taper down to come off, not go cold-turkey. Good luck with your decison, just be sure it is an informed one and that you have a back up plan should you have to come off.

[Spotz]

I just started my Raptiva injections this past Sunday. So far, I have no complaints. I'm not experiencing the "flu-like" symptoms, or the joint pain that my derm warned me about during the first few weeks/months.

I understand that some people experience big flares when coming off Raptiva cold-turkey, so if and when I need to come off this drug, my derm and I are ready with a plan.

Good luck!