My wife and Raptiva

[johnwojo]

It has been a long time since I've been on the board. My wife is the person with P and she now has insurance. Her doctor wants to treat her with Raptiva. I was charged with doing the research to make sure that it was going to be safe. I saw a lot of serious side effects. Has anyone here had first hand experience with Raptiva? We also want to try to have kids. Please give any help and info that you can. We are both excited about her being treated but are worried about the potential side effects. :confused:

[sparklingfire]

Hi-I don't think we've met. It's nice to meet you.

I have been on and off Raptiva for a few years now so I have a lot experience with it. Personally, the only side effect I've encountered is serious rebound when/if I have to stop the medication for more than a couple weeks. The rebound is awful. It's not just a flare, I actually experience P where I've never had it before when I stop use of Raptiva. However, each time I restart the med I clear up, and quickly! I'm currently about 98% clear. I can wear tank tops and shorts without embarassment. (I live in FL so it's warm here) Raptiva has been my savior. I love it and do recommend it.

That being said, I must warn you. If you're planning on having children, I would NOT choose Raptiva. I'm not a doctor so this is just my opinion, however, I believe there are "safer" choices to begin with before going on Raptiva when considering children. Personal experience... About 2 years ago I had been on Raptiva for about 8 months. I found out I was pregnant and a week later had a miscarriage. This was a very emotional event and so hard to deal with. I'm not saying the Raptiva was directly related to my miscarriage because there were other factors that I found out about later. However, in my heart I believe Raptiva somehow played into the problem. If I recall correctly Raptiva is a Class "C" classification regarding safety during pregnancy. And if my memory serves me correctly, class "c" means it's not safe during pregnancy. (This is where rebound would be a factor also) Again, I only tell you this so you can make a well informed decision, not to scare you.

Remember, everyone responds differently to each medication. What works for one won't work for another. If you have specific questions or just want to talk about it, feel free to PM me.

Take Care and Good Luck,
Jen ;)

[mattasl]

Welcome back to the board! I have been on Raptiva for a month now. My wife and I were very nervous about using Raptiva. The literature sounds really scary when you read it. I made some phone calls to Raptiva and my dermatologist's office several times with different questions. They eased my fears. My wife and I were desperate to try some treatment that was promising. Steroid creams and other treatments weren't doing the job at all.

Since being on Raptiva, even though it's only been a month, I'm starting to see results. My hands have cleared up remarkably well and I'm hoping the same will happen with my feet soon. I take my injection every Thursday night. Once a week is MUCH better than "gooping-up" with creams every morning and night.

I am pleased with my results so far and look forward to more skin improvements. My best advice would be to make some phone calls. Real people, in my opinion are always better than reading scary results. For me, psoriasis really affected my job, and I needed clear hands. I am much happier with Raptiva, and I think less about my p on a daily basis. I can work again without painful hands. Hopefully my advice was helpful. If not, I'm sure someone else will post some helpful tips. Take care and good luck!

[johnwojo]

Thank you both for your replies. Please keep them coming. I want desperately to hear from real people that have had experience with Raptiva. The literature can scare you away from the treatment.

[TheOne1313]

I kinda had a good/very bad experience with Raptiva.

The good news: It definitely cleared my psoriasis up.

The bad news: It's been known to cause arthritis in some people and thats what had happened to me. I was in so much pain. Eventually I had to go off it. Then the arthritis went away, however like someone pointed out in this thread, the rebound effect on the psoriasis was horrible. I was getting it in places ive never gotten it before....my face......everywhere u can imagine. I guess what im saying is if your wife chooses Raptiva and has to go off it for some reason, make sure you have another medication option ready to slow down the rebound effect.

[khorath]

I was on Raptiva for several months. At first, it worked great and I saw substantial clearing of my P.

Then, just like mentioned in other posts, the PA hit me - HARD. My skin then started to get worse. I can't say for sure that Raptiva caused my PA, but it seems awful coincidental.

I eventually had to stop Raptiva. The pictures in my profile show me in August of 2004. That was when I made the transition from Raptiva to Remicade. Today, I'm basically 100% clear of P and no longer experience any problems with PA.

Kevin

[ami]

I was on Raptiva about a year and a half ago, for about two months. While on it, I developed a horrible flare up, with psoriasis lesions popping out in places I had never had any before, and all of my psoriasis got worse (redder, more inflamed, painful). I also got a horrible case of bronchitis. I don't know if that was related or not, but it seemed to be to me.

That being said, I have met and heard of people who had similar worsening of their psoriasis while in the first few weeks of Raptiva, and worked their way through that and are now clear and still using Raptiva. They tried combination therapies (light, MTX, etc.) to get them over that initial "hump" until they started improving again.

It did not work for me, but it definitely has been a wonder drug for many. Even though I flared with Raptiva, I still would have tried it and would recommend it to people. Psoriasis treatment is all about trial and error. You have to try something to know if it is your magic treatment. I just wanted to share my Raptiva experience just to let you know what can happen.

[johnwojo]

Thank you everyone for letting us know about your experiences. It is really giving me quite a bit to think about. There are so many serious side effects that I cannot go into it lightly.

[wiredown]

I was on raptiva and it cleared me up in a matter of months. My wife also got pregnant while I was on it. The docs said it would not be a problem, But my wife wasn't on it I was that might make a different.

Later

Dennis

[nsf103]

Hi all,

I was on Raptiva for about 6 months. I went off of it because I was developing new forms of p in places that I never had it before. At first, it was only a little patches here and there and then I began to develop genital P and that is where I had to draw the line; it was too painful. However, I loved Raptiva while I was on it...I had failed with so many other drugs including cyclo, enbrel, mtx, and amevive. Raptiva was my saving grace for a while. I had never had such clear skin (i have pppp) and was loving it...it especially made a difference in my feet - they were actually smooth for the first time in 4 years!

While on all of these meds, I have always been concerned about if they would affect my ability to get pregnant in the future (i'm only 26). Trhoughout, I expressed these concerns to my derm and have always trusted his expertise. I have also discussed my P with my gynecologist. He is familiar with many of the drugs and their effects because his wife has RA. He also treats pregnant patients with P...they stay on low dose meds through pregnancy and the babies are fine. I also trust him completely...he is the head of OBGYN at one of the best hospitals in the northeast.

With all of that said, I find that regardless of what drugs you are on for P, it is extremely important to express concerns, any and all, with your doctor beforehand. It is also very important that you trust your derm and their medical knowledge. I am so comfortable with my derm and the way that he proceeds with ym treatment. At this point, I have b4een seeing him for years and there is no question or issue too embarassing or sensitive to bring up with him. An open and honest forum with your derm is very important and crucial to P treatment (in my opinion!).

best of luck....and rememberm, everyone reacts differently to every drug...I will keep my fingers corssed that raptiva helps you!
Nicole

[alli]

You might want to look at a thread DianA created called the waxing and waning....
http://www.psoriasis.org/forum/showthread.php?t=16374
She documents her experience with Raptiva and includes pictures.

[Zanshin]

I've been trying to get Raptiva for about a year + now with my insurence company. I eventually gave up and havnt even been to the boards untill about 2 weeks ago. I came back to read up on a few things and I learned that the NPF has people who can help with getting or trying to get insurence to help people with biologicals. This gave me a pinch of hope. I'm currently tyring to gather the needed info to present to my derm and I'm going to try to take another wack at it in April and hope to get it. I'm kinda scared now after hearing about some neg. effects some people have had but I'm going to keep my fingers crossed and hope it works for the better for me......if I can get it. Best of luck to your wife clearing up her P and best of luck to you both as far as having children :).