Raptiva

[clearlyhopeful]

Hi everyone. I am new here, but have been struggling with psoriasis for the past 27 years of my life. I have seen countless different derms and tried even more different topical ointments. I am currently treating myself by bathing in dead sea salts and olive oil, applying moisturizer twice a day and spending 4 minutes in a local tanning bed 3 times a week. Although this process does help keep my P from being bright red and extremely itchy, it has not been very effective in clearing it.

At the advise of my physician I have recently visited a new dermatologist. He took one look at me and was convinced that I am the perfect candidate for Raptiva. I was on cloud 9 when I left his office. I had never heard of the biologics and was very optomistic. I am currently in the process of getting approval from my ins co. In the meantime I have been researching the drug and I am looking for feedback from those of you who have tried it.

Can anyone share their experience with me??? I would truly appreciate it.

[MikeK]

Hi Clearlyhopeful,

Welcome to the Board! Nice to meet you. You've come to a very special place. A lot of nice and helpful people post here. More important, it's great to FINALLY be able to ask questions, vent, exchange info, or even share some laughs with people who truly understand.

One of the most frustrating things about psoriasis is that a treatment that works for one person may or may not work for another and that's certainly true about Raptiva. The good news is that some people have done very well with Raptiva. The bad news is that some people have had problems with it. Here's the links to some previous discussions about Raptiva:

http://www.psoriasis.org/forum/showt...655#post183655;

http://www.psoriasis.org/forum/showthread.php?t=14902;

http://www.psoriasis.org/forum/showthread.php?t=14729. (This thread includes links that will take you to many previous discussions about Raptiva.)

I hope this helps.

Good luck. Keep us posted. Let us know if you have any other questions. I hope and pray that Raptiva turns out to be your wonder drug.

Mike

[RichJ]

hi Clearlyhopeful,
welcome to the p family. you have met some of the wounderful people on here and will find alot of great info. welcome and nice to me you

have a good night all

richard

[PJ66]

Hello and welcome! I have never tried raptiva so I can't help you there. Just wanted to say hi.
Polly

[RichJ]

Hi everyone. I am new here, but have been struggling with psoriasis for the past 27 years of my life. I have seen countless different derms and tried even more different topical ointments. I am currently treating myself by bathing in dead sea salts and olive oil, applying moisturizer twice a day and spending 4 minutes in a local tanning bed 3 times a week. Although this process does help keep my P from being bright red and extremely itchy, it has not been very effective in clearing it.

At the advise of my physician I have recently visited a new dermatologist. He took one look at me and was convinced that I am the perfect candidate for Raptiva. I was on cloud 9 when I left his office. I had never heard of the biologics and was very optomistic. I am currently in the process of getting approval from my ins co. In the meantime I have been researching the drug and I am looking for feedback from those of you who have tried it.

Can anyone share their experience with me??? I would truly appreciate it.

hi clearlyhopeful,
sorry i can't help much but welcome to the pfamily. you will meet alot of wonderful poeple on here and will find alot of great info. welcome and nice to meet you

have a good night all

richard

[cordiod]

Hi clearlyhopeful!

I noticed that a few of my threads were referenced in Mike's links, but I thought I would provide you with visible proof. In this link, http://www.psoriasis.org/forum/showthread.php?t=16374 I have a photographic diary of my clearing as a result of Raptiva.

Hopefully next week I will get current pictures posted. My latest on this link are from 8/30/05, and my clearing has been quite significant since then.

I wish you the best on your journey with Raptiva. It certainly has been working for me.

[suzmiata]

Hi,
I was on Raptiva from April 2004-2005. My Dr. dropped me because I didn't get my blood work done in time. My skin broke out big time. I have a new Derm and am back on Raptiva, in just 6 weeks my skin has started to clear. I feel human again. Raptiva works well for me.
I have had no side effects.
Sue

[nsf103]

As it was said earlier, no treatment works the the same for everyone, which is why everything we try is a crapshoot! I have pppp and have been on topicals, done puva, taken cyclosporine, enbrel, methotrexate, amevive, and now, raptiva. I have been on raptiva for about 9 weeks and I am about 95% clear!!!!!!!!!!!! It has been my saving grace and I am hoping that it continues to be. I had some side effects with the first 2-3 injections such as fatigue, terrible headaches, and mild sore throats. After those first few weeks, though, my symptoms subsided and I now take it every week without any problems. i had basically given up on getting better, but raptiva has turned things around for me. i wish you luck should you decide to take it. just be sure your doc is monitoring your blood each month (platelets and white blood cells are the ones to watch on this i think) and you should be ok. i will keep my (now clear!!!) fingers crossed for you.

cheers,
nicole

[pryals]

I am a Raptiva user. Though I have had to come off the med as of late. It does work or at least for me it did. I was even shocked that I could give myself an injection, used to be affraid of needles but not anymore. I have planters psoriasis (soles and palms). I used Raptiva for almost 2 years and had to stop due to infections. Be aware that this can lower your immune system. The info I was given was 1 out of 100 will experience a compromised immune system. I had back to back strep throat for 2months. I did not think I would ever get well. Then I got shingles, then a secondary infection. Now I have what is believed to be psoriatic arthrits. I guess I fell into the 1 percent to get sick. I have not had a flare in almost 2 years. Even after stopping the Raptiva I have only had one event of a minor flare. So I consider myself lucky so far. In some cases, when stopping the Raptiva you can get a flare that is worse than you have ever seen. I am still a fan of the drug I just can't take it anymore. It is probally better for those with moderate to severe all over psoriasis. Talk with your DR about all the side affects and research all the info about it. If you start it your doctor should have you do blood work on a regular basis to check your platlet counts. It certainly is good to have the meds available now and the suffering can be cut to a minimum. Good luck to you. pryals

[RichJ]

hi pryals,
sorry i can't help to much but welcome to the pfamily. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

have a good night all

richard

[Julietzzz]

Hi,
Raptiva was a nightmare for me.
I am still having trouble walking from an inflamed knee.
My P got much worse...
For some people it has worked great.
I have had better luck with Enbrel. I reached a plateau with Enbrel, so I went to raptiva...I am worse than ever...back on Enbrel
I hope it works for you....
good luck

[ami]

I am much like the previous poster. I have been on Enbrel for about three years, but had also plateaued with it. That's when my derm decided I should have an Enbrel hiatus and try Raptiva.

It was actually a year ago this month that I was on Raptiva. I took it for about two months, and had a very bad case of bronchitis that took a month to clear up, and also, I popped out with P lesions EVERYWHERE, places I had never had P before. It was a nightmare for me also. I was miserable. We thought it might help me, but it made things worse. I switched back to Enbrel (once my bronchitis was cleared up) very quickly and have done pretty well since then, though I am not clear. I have had recent success with taking an Omega 3 supplement in conjunction with my Enbrel.

That being said, you won't know if Raptiva is your "miracle drug" until you at least try it. Some people have had much success with it and none with Enbrel. So, it is very different for each person. I am curious as to why your derm feels you are such a good candidate for Raptiva and not Enbrel. Not that one is better than the other, but it seems (and maybe I'm wrong) that most people try Enbrel first.

In any event, best wishes on trying the Raptiva. It may work for you! You have to try to find out.

[itchygirl]

HI to everyone. I took Raptiva last year after it was FDA approved. Had some weird side effects like most people...my knee hurt for three weeks..then went away, had fevers, sore throats, itchy rash, mild flares, and just kinda felt weird at times. It also, after sometime, "hyped" me up. I lost weight (which was good) but had a hard time sleeping too. After 10 months, I broke out in a nasty vesicular rash that was biopsied by me derm and was a "drug eruption". She took me off it before I was biopsied and only used a large dose of pred once. YIKES, I flared very bad...had the nasty bronchitis thing for almost two months too, but go tover it. Eight weeks later, I went on Enbrel. I have worked through all the side effects of this too. The worst is the extreme exhaustion, weakness in arms, migraines, and dizziness. I will do ANYTHING to go BACK to red, itchy, painful skin. I now take a maintenance dose 50mg a week. It is barely holding me, but I still perservere. I think I am ready for Raptiva again. I think Raptiva is stronger and takes the redness away quicker. ALL drugs have side effects. And oh, I still say quality of life is what is important! Colleen (itchygirl)