Embril to Raptiva

[nerlichman]

I have been suffering from P for the last 10 years (I am 32 now). At my worst I have been about 35% covered. I have applied every cream and ointment possible. I have gone through photo therapy with little success. I had a course of Methotrexate, but had to stop due to elevated liver enzymes.

About one year ago I notice that I was developing psoriatic arthritis and this was confirmed by my dermatologist. At that time I began a taking Embril which was a life saver. I was almost clear with no joint or muscle pain from the PA. I had my blood taken every three months. In November I again produced elevated liver enzymes. Interesting enough my doctors told me that Embril does not suggest testing for elevated liver enzymes, but please have your blood tested if you are taking this medication. Due to the elevated liver enzymes, I had to discontinue Embril. Within one month I experienced an extreme flair up and nasty joint and muscle pain came back!

Obviously now I am devastated again since my entire scalp is crusty, patches are back on my hands, my fingers hurt so much from the cuts, little red dots (then scaling) all over my mid section, back, arms, legs and now my finger and toe nails are starting becoming weak . I started Raptiva on Tuesday. On Tuesday night I threw up all night, hot flashes, and chills. I do not know if this is a coincidence since my wife had the same symptoms three days before from a stomach virus. I hope I had the stomach virus and that what I experienced was not the side effects.

I hope Raptiva works and would really appreciate any replies from people who have taken Raptiva. I know that every one here knows how I feel and that many have my experienced my story. Reading these posts give me hope and inspiration.

Thank you.

[wiredown]

raptiva worked well for me. It cleared me up in about a month or so. I am currently off of it and been off of it for 10 months. . Raptiva does require blood work. I was on embrel first, but taken off due to side effects. The doc is now putting me on humira.






tried to walk into a target once and missed

[ShadowThomas]

Is Raptiva an injectable drug or a pill ? I have been off of Enbrel for two weeks on count of an infection, but will start back on Enbrel this Tues. I have taken 11 injections of Enbrel so far with no results I will be seeing my Rhuemy this Thur. I may very well have to try something else. Thats why I asked about, Raptiva.
Thanks.

[MikeK]

Hi Nerlichman,

Welcome to the Board! Nice to meet you. I'm sorry to hear that you're going through such a rough time. I'm sorry to hear that you had to stop using Enbrel because of side effects.

The makers of Raptiva, Genentech, halted terminate Phase II clinical trials of Raptiva as a treatment for rheumatoid arthritis (RA) because their evaluation of the data suggested RA patients did not benefit from using Raptiva, so I'm surprised that your doctor offered it as a treatment for both psoriasis and PA. (Here's a link to Genentech's press release: http://www.gene.com/gene/news/press-...detail&id=6107.)

There are several people who post here who use Raptiva. Some of them do very well with it and others have been very disappointed with the results that they saw. Here's the links to some previous discussions:

http://www.psoriasis.org/forum/showt...iva#post199875;

http://www.psoriasis.org/forum/showt...hlight=Raptiva;

http://www.psoriasis.org/forum/showt...hlight=Raptiva;

http://www.psoriasis.org/forum/showt...hlight=Raptiva;

http://www.psoriasis.org/forum/showt...hlight=Raptiva. (This last link will eventually take you to many other discussions about Rapitva.)

http://www.psoriasis.org/forum/showt...hlight=Raptiva.

I hope this helps.

I hope that you feel better soon.

Good luck. Keep us posted and please don't be a stranger.

Mike

[MikeK]

Is Raptiva an injectable drug or a pill ? I have been off of Enbrel for two weeks on count of an infection, but will start back on Enbrel this Tues. I have taken 11 injections of Enbrel so far with no results I will be seeing my Rhuemy this Thur. I may very well have to try something else. Thats why I asked about, Raptiva.
Thanks.

Hi Thomas,

I'm sorry to hear that you're not feeling well and that Enbrel hasn't worked as well as you had hope. Raptiva is an injection like Enbrel. However, as I mentioned in my previous post, I was more then a little surprised that Nerlichman's doctor offered it as a treatment for both psoriasis and PA. As I also mentioned, the results from clinical trials of Raptiva as a treatment for RA were so disappointing that Genentech decided to end the trials early. Once again, here's a link to the press release: http://www.gene.com/gene/news/press-...detail&id=6107.

Feel better!

Mike

[cakp12]

Raptiva was the first biologic I was put on- didn't help me much and then I developed other forms of P (normally I only have PPP). So I switched to Enbrel which keeps things to a dull roar and I can function- I go up and down but for the most part am doing OK
Good luck with the new Tx

[jdgarwood]

[QUOTE=wiredown]raptiva worked well for me. It cleared me up in about a month or so. I am currently off of it and been off of it for 10 months. . Raptiva does require blood work. I was on embrel first, but taken off due to side effects. The doc is now putting me on humira.


I'm curious about what side effects you have experienced from Enbrel. I've been on E for 4 months and it started working for my PA after about 3 months. It has also kept my moderate P at bay. I recently had my bloodwork come back with liver enzymes elevated higher than they ever have been. I'm going to have them checked again in 6 weeks. As far as I know, Enbrel shouldn't cause any liver problems...just wondering how Enbrel effected you negatively. Thanks.

Joel

[wiredown]

I mainly just had sinus infections. one after a another. I got off of enbrel and switched to raptiva. With the raptiva I had no side effects. Raptiva did clear me up. I quit taking it in march of last year. My own decison, but now my p is so bad i went back to the derm and he is putting me on humira.


wiredown

[jdgarwood]

I mainly just had sinus infections. one after a another. I got off of enbrel and switched to raptiva. With the raptiva I had no side effects. Raptiva did clear me up. I quit taking it in march of last year. My own decison, but now my p is so bad i went back to the derm and he is putting me on humira.


wiredown

Thanks for the info....so far I haven't had any infections since starting Enbrel. Hopefully it'll stay that way. Good luck with the Humira!

Joel

[nsf103]

Hi all,

i've been on Raptiva for about 4 months now and its made me about 95% clear! i've only recently started to develop very small patches of plaque psoriasis (i am being treated for PPPP) which is a bit discouraging but manageable. i have not, luckily, had any side effects from raptiva. after my first injection, i had a horrendous headache which sidelined me for a day. the following week, i had the same thing but not as severe. by my third dose, i was fine. i do not have PA (and hopefully will nto develop it) so my derm was ok with me going on raptiva. i understand that there is a chance of someone's PA getting worse while on raptiva. i got my blood tested regulalry every month for the first 3 months. i now only get tested every 3 months - my derm is involved with many studies that show is your blood work is still at normal levels after 3 months, testing each month is not necessary. i am also now only seeing him every 3 months as opposed to every month which is WONDERFUL for me because i've been seeing him monthly for 3 years now!

best of luck with raptiva...its been my saving grace and i will keep my fingers crossed that it will be yours, too!!!

[nerlichman]

My derm did not say that Raptiva would work for the PA. As everyone has mentioned, it does not work for PA. The Embril worked for both, but elevated my liver enzymes. The only thing I do for PA is take about 800 mg of Ibuprofin (it doesn't do much).

[jdgarwood]

My derm did not say that Raptiva would work for the PA. As everyone has mentioned, it does not work for PA. The Embril worked for both, but elevated my liver enzymes. The only thing I do for PA is take about 800 mg of Ibuprofin (it doesn't do much).

I guess that my question is....can Enbrel elevate your liver enzymes? I didn't think that was possible because it's injected, not taken orally. My last bloodwork showed elevated enzymes...higher than they've ever been. I've been on Enbrel for 4 months and it's really helped my PA & P. That would be just my luck to find something that finally works and have to quit it!

Joel

[MikeK]

My derm did not say that Raptiva would work for the PA. As everyone has mentioned, it does not work for PA. The Embril worked for both, but elevated my liver enzymes. The only thing I do for PA is take about 800 mg of Ibuprofin (it doesn't do much).

I'm sorry to hear that you had to stop using Enbrel. Is the liver enzyme problem the reason why your doctor didn't suggest Humira or Remicade (which are both used to treat PA)? I hope you find something that doesn't cause any side effects and which gives you relief from both your psoriasis and your PA.

Feel better and please keep us posted.

Mike

[RichJ]

hi nerlichman,
sorry i can't help much but welcome to the p family. 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

[pigpen]

nerlichman:
when you came off enbrel, you said you had a flare up. my question for you is this: did it come back worse than it was before?

[nerlichman]

Although Embril does not indicate blood testing for liver enzymes, they should be monitored. Enbril did in fact elevate my liver enzmyes. Embril, as well as Humara sythesizes through the liver, whereas Raptiva does not. So I have to settle for a high dose of Ibuprofin for my PA. Raptiva may effect blood platlets so please have that monitored regularly.

It is such a shame because Embril was my cure for P and PA and I had to stop because of the liver enzyme elevation.

[SamanthaW]

Hi Nerlichman,
I am currently on Raptiva. I started late August/early September of 2005. When I took the first few injections I experienced nausea, slight chills and headaches. The headaches and chills subside, but still to this day I get a little bit of nausea after I inject myself. I was on R for several weeks when I developed an ear infection that I had trouble clearing up. I then got lumps in my leg that I had to see a surgeon for (which turned out to be nothing serious). It was not due to injection site reactions. I went off R and a few weeks later if became edermic. Having p for 25 years (I am 41) I never experienced this or heard of this. My doctor warned me of a flare from discontinuing, but I never in my life PLEASE YOU OR ANYONE DISCONTINUING RAPTIVA, WATCH OUT FOR THIS! It can be very serious, not that you will get this from discontinuing. Thanks to the people on the boards, they instructed me to call my doctor (on thanksgiving) immediately. I went on mtx to calm things down and felt very tired. I did go back on Raptiva at the beginning of December 2005. I was about 75% covered prior, I am about 50% now. I have had a bladder/urinary infection for the past month and a half and now I have strep b that was found in my urine. It may be the same infection that I have had for the past month. I am getting new patches on my hands and feet, which is about the only place I did not have it, so I am a little disappointed about that. I have had a rollercoaster experience and am not sure I even want to stay on it, but I am having surgery tomorrow, so it is not the time to think of going off it. Anyway, hope this helps. Best of luck to you! Let me know if I can help in any way. I should be back online Friday or Saturday.
Samantha