Raptiva: good, bad, or other?
December 15, 2006 6:13 PM Subscribe
Do you have first-hand experience with Raptiva (efalizumab), for psoriasis?
After almost 20 years of fruitlessly battling psoriasis, by every means available to me, with not a day of remission, I'm finally starting on Raptiva next week.
While I'm really, really excited about the prospect of wearing short sleeves, skirts, and bathing suits without shame, and to getting intimate with a new lover without having to warn them of what they are about to see, I'm getting a little scared.
I think I'm over the fear of self-injecting. In any case, it pales compared to the side effects I've read about, and the unknown long-term effects of the drug.
Have you used Raptiva? Did it work well for you?
Did you get infections? Anaemia? Do you worry about cancer?
If you stopped using it, did you immediately flare badly?
Anything you could share about the experience would really, really help me relax about this and just feel hopeful for once.
(Info about other biologics would be interesting, but Raptiva is a dissimilar protein, so it probably won't translate directly to my experience.)
After almost 20 years of fruitlessly battling psoriasis, by every means available to me, with not a day of remission, I'm finally starting on Raptiva next week.
While I'm really, really excited about the prospect of wearing short sleeves, skirts, and bathing suits without shame, and to getting intimate with a new lover without having to warn them of what they are about to see, I'm getting a little scared.
I think I'm over the fear of self-injecting. In any case, it pales compared to the side effects I've read about, and the unknown long-term effects of the drug.
Have you used Raptiva? Did it work well for you?
Did you get infections? Anaemia? Do you worry about cancer?
If you stopped using it, did you immediately flare badly?
Anything you could share about the experience would really, really help me relax about this and just feel hopeful for once.
(Info about other biologics would be interesting, but Raptiva is a dissimilar protein, so it probably won't translate directly to my experience.)
Response by poster: Thanks for replying. I think I am kind of in the same place as your friend's daughter -- being free of the psoriasis would definitely make me less concerned about theoretical future risks. I'm glad to hear it works for her. I really really hope it works for me.
posted by loiseau at 12:09 PM on December 16, 2006
posted by loiseau at 12:09 PM on December 16, 2006
Response by poster: Oh - I want to add, in light of some discussion on MeTa about Googlable answers, that I've been hooked in to psoriasis groups and suchlike for a million years, and I've read lots, but I was just curious about Mefi members specifically.
posted by loiseau at 3:29 PM on December 16, 2006
posted by loiseau at 3:29 PM on December 16, 2006
I'll start off by saying I never used, or even heard of Raptiva. But, I had mild psoriasis from childhood until about 10 years ago.
Here is what I think helped me:
-I eat an mostly vegetarian (eat chicken occasionally when I go out, but never eat meat at home)
-I try to live a stress less life, as much as possible (stress is what brings on flare-up)
-I drink a lot of water
-I keep my skin moisturized (I use a perfume free one - Cataphil)
-I stayed away form soap and detergents (used egg yolk to wash my hair instead of shampoo, and rinsed with vinegary water). I also used the egg yolk to wash my hands. I know it sounds gross, but it helped tremendously!
-in the summer I sun-bathed 15 minutes every day (of course, make sure it's not during the mid-day hourrs, but rather mid-morning, or late afternoon).
Good luck: I hope you get some relief soon.
posted by adriana at 2:58 PM on December 31, 2006
Here is what I think helped me:
-I eat an mostly vegetarian (eat chicken occasionally when I go out, but never eat meat at home)
-I try to live a stress less life, as much as possible (stress is what brings on flare-up)
-I drink a lot of water
-I keep my skin moisturized (I use a perfume free one - Cataphil)
-I stayed away form soap and detergents (used egg yolk to wash my hair instead of shampoo, and rinsed with vinegary water). I also used the egg yolk to wash my hands. I know it sounds gross, but it helped tremendously!
-in the summer I sun-bathed 15 minutes every day (of course, make sure it's not during the mid-day hourrs, but rather mid-morning, or late afternoon).
Good luck: I hope you get some relief soon.
posted by adriana at 2:58 PM on December 31, 2006
Response by poster: Adriana, I didn't even see your reply until now.
Believe me, I have tried everything, or else I wouldn't be resorting to the serious immunosuppressant medicines. Mine is not a mild case of psoriasis that can be managed with lifestyle changes, unfortunately.
Just a note: you still have psoriasis! It's just not flaring right now. There is no cure.
I came back to update that I've been on the Raptiva since just before Christmas, and have done four injections now. I am afraid to be too hopeful, but I think I am just beginning to see some change in one area, and it's really, really exciting. I really really just want to be clear.
posted by loiseau at 8:55 AM on January 11, 2007
Believe me, I have tried everything, or else I wouldn't be resorting to the serious immunosuppressant medicines. Mine is not a mild case of psoriasis that can be managed with lifestyle changes, unfortunately.
Just a note: you still have psoriasis! It's just not flaring right now. There is no cure.
I came back to update that I've been on the Raptiva since just before Christmas, and have done four injections now. I am afraid to be too hopeful, but I think I am just beginning to see some change in one area, and it's really, really exciting. I really really just want to be clear.
posted by loiseau at 8:55 AM on January 11, 2007
This thread is closed to new comments.
posted by brandz at 8:53 AM on December 16, 2006