Decisions

[MelissaC]

So I got all approved by my insurance carriers for Raptiva and am just waiting for it to come in. I also have a script for methotrexate because I wasn't sure which treatment I wanted to go with. I have been looking at pictures of some of you and I would say I'm moderate in comparison. I'm torn because I don't know which treatment option to go with. Should I reserve the Raptiva in the event the methotrexate doesn't work?
Frankly i'm scared of the biologics. I work in a hospital and I don't want to open myself up to god knows what for infections. I tend to get sinus infections frequently and don't want to get MRSA or TB. I'm probably already a MRSA carrier as nurses all end up being carriers, but I don't want to actively develop it.
I'm also scared of a flare if I quit the drug. From what I am reading the flares sound pretty nasty.
On the other hand I don't want to fry my liver with methotrexate. I know I need something more than the topicals and I don't want to try soriatane.
Can you all help me muddle through the pros and cons of each? Which drug would you take and why? If you were me based on what I've told you which one would you pick? TIA!

[Stillworking]

I am also a nurse and an infection control facilitator for my facility. I have plaque P and agressive PA. I have been on Remicade for 18 months now along with prednisone, plaq. and flexeril for my cervical spine. My Remicade dose has been increased from 3mg/kg up 7mg/kg and now will be given every 6 weeks due to the nature of the beast. Now I am off the prednisone (after one year on) and doing OK. I work full time so I am exposed to a variety of infections. Even without the PA, the rheumy told me that he would still reccommend Remicade for me bcause of the extent of the P. I also use inhalers D/T asthma. I have never been on any other biologic, so I can't compare. I have heard good and bad things about Raptiva. It seems that when it works, it works well, but can also have very bad flares attached to it. I am very good with the choice I made (which was basically the insurance carriers choice). I seem to be on less meds and am doing just as well if not better than some people that are on Enbrel. I'm sure that others will voice their opinions as there are quite a few people on bio's. I was diagnosed with PA 3 years ago and P 20 years ago. This is the best I have been in a very long time as far as skin goes. As far as PA, you have good and bad days and you relearn how to do a lot of things that you always took for granted. As far as sinus infections go, is there a reason why you are getting them frequently? That is an answer that I would be curious about. I don't seem to get sick any more than I did before, but I do take some precautions just like any other person, such as avoiding crowds, hand wash (Isogel in the purse) and good food and enough rest and exercise. Hope this gives you some insight. I also have an infusion on my day off and usually go back to work the next day. Good luck.

[MelissaC]

I think the sinus infections are a throwback to constant rhinitis. I take nasocort for the allergies and infections. I'm seldom on antibiotics for it, as a lot of the time it runs it's course, but just the fact that I get them worries me with the increased risk of infection as a side effect of the Raptiva.

As far as I know I only have psoriasis and not the accompanying arthritis. I do get a burning in two toes but attributed it to...well I don't know why I thought I twas there. Maybe it is PA. The fact that I don't have PA also makes me hesitant to go the biologic route.

[cordiod]

Melissa,

First of all, I would like to welcome you to the message boards! :D

I am curious and want to make sure I understand you correctly...you have a Rx for MTX (methotrexate) and Raptiva, but have not received either at this time? Often times they are prescribed to be taken concurrently, it seems to help the efficacy of the Raptiva.

I personally have been on Raptiva for a year now and have been taking that with MTX the entire time. My derm and I have been weaning me off of the MTX since I began (I was pretty severely covered when I began) so I am currently only on 5mg (2 pills) of MTX/wk.

With the exception of one big hooplah of a sickness last fall, I have been pretty much free and clear of any ailments. I do work in a "high traffic" area of my office and make sure I wash my hands etc. etc. often to not contract germs, but I'm sure this doesn't compare to working in a hospital like you do.

I also understand that this will be the first biologic you will (may) try. Be forewarned that every treatment works differently for everyone. Don't get your hopes up too high, as they might come crashing down :( . Raptiva was the third biologic I tried and fortunately, I have had significant success with it. However, I did not with the first two. It was hard to come to terms with, but you just have to not give up.

If you care to view my history, you can do so by checking this thread (http://www.psoriasis.org/forum/showthread.php?t=16374&highlight=waxing+waning). It is the roller coaster ride that is my psoriasis. You can also read about my treatment regime and reductions of MTX throughout the year.

I hope you find this helpful, and wish you the best in your treatment decision!
Diana

[MelissaC]

Thanks Diana.
Yes I have a scrip for both of them. I thought I would take them both in the event my insurance didn't cover the Rapitva. I don't think I am severe enough to warrant both MTX and Raptiva. My derm never said to take both.i just asked for the MTX in the event they turned me down on the Raptiva. Now I have it and am approved I just don't know if I want it.
I used MTX sucessfully several years ago, I just didn't want to stick to the no drinking part of it.Now i am older and the partying is out of my system I am willing to try MTX again.
I am just really trying to make an informed decision on which drug to take. I never expected to get the approval for the Raptiva in 1 days time. Since I did get it so fast though, I never filled the MTX yet.

Diana I did read through your postings last night. It is one of the reasons I am thinking I don't need Raptiva.I am no where near as covered as you were. I'll take some pictures and post them.

[MikeK]

Hi Melissa,

I don't think that we've met, so let me take this opportunity to welcome you to the Board! :cool: Nice to meet you.

Marie (nitegale) is a nurse who has been on MTX and Enbrel (separately and at the same time). Hopefully she'll come along and share some additional thoughts with you.

Since you've already been on MTX, you know how you respond to it and the kind of side effects that you've experienced, etc.

Raptiva is actually a very puzzling medication -- people either respond very well to it or have serious problems from it. There doesn't seem to be any in between. (Also, Raptiva is notorious for causing psoriasis to get much, much worse when people have to stop taking it for any reason.) Diana has already shared her positive experience with Raptiva with you. Here's a link to a previous discussion about Raptiva. (My reponse in that thread will take you to many more discussions about Raptiva): http://www.psoriasis.org/forum/showthread.php?t=20371&highlight=Raptiva+arthritis.

Sadly, SamanthaW recently had a hysterectomy. At first it was to address a "pre-cancerous" condition. She then got the devastating news that she stage 1 uterine cancer. It's probably only a coincidence, but she was on Raptiva at the time. Here's the links to her very sad posts:

http://www.psoriasis.org/forum/showthread.php?t=18448;

http://www.psoriasis.org/forum/showthread.php?t=19051.

Samantha used to come into the chat room all the time. Some of us had developed a fairly close internet friendship with her. We haven't heard from her in several months. I hope and pray that she's o.k.

You're expressing doubts about going on biologics. You seem to prefer not take MTX again. From your description, it sounds like psoriasis is either moderate or bordering on severe. Have you thought about light treatments? Light treatments can be a pain (literally -- some people have been burned by them) because you'd have to go three times a week for several months for treatment. Not everyone responds well to them and you might run into insurance issues, but they can be a safe and effective weapon in the war against psoriasis.

(I'm not sure about the availability of light treatments in Canada. Chris (kringle) lives in Ottawa and wasn't even aware that light treatments were an option for her daughter until she came here. (It could have been an insurance issue.) We haven't heard from Chris in a very long time, but here's a link to the thread where she discussed her experience: http://www.psoriasis.org/forum/showthread.php?p=20298&highlight=light+therapy#post20298.)

I hope this helps.

Good luck! Keep us posted. Let us know if you have any other questions and please don't be a stranger.

Mike

[evergreen]

Hey Melissa! I'm on Humira and MTX...if you take MTX, please take a daily folic acid supplement as well and have routine blood-work/liver tests. I too work in a hospital and for a time, thought I had never been healthier than when taking these meds...I think I've become more proactive in my hygiene and care to stay away from coughing and sneezing peeps. I have P & PA and was not prescribed anything but the topicals until the onset of PA in my thumbs. Personally I would take one of your Rx's and see how things go...I was prescribed MTX first and then supplemented with Humira about a month later.

Take care~

[MelissaC]

Thanks Mike, thanks Everygreen.
My derm did prescribe folic acid with the mothotrexate as well as weekly blood work. :) I think I've made an informed decision and It looks like Raptiva just may not be for me. I'm gonna try the MTX and see how it goes. I just don't like hearing of the nasty side effects of the Raptiva. Thanks for all of your responses. (((everyone)))

[lpagano]

Hi Melissa:

I am on Enbrel, but I was on MTX for 16 years. I did get a lot more colds on the MTX than I do on the Enbrel. I did take folic acid which helped. I too am prone to sinus infections, and they were a little worse on the MTX, in fact they have not been a problem on the Enbrel, however the MTX worked better for me. Good luck with your decision.

[mamaooch]

Hello Melissa,
I started taking MTX back in May and tomorrow will be my second infusion of Remicade. I teach computer skills in a K-2 school. Naturally I am concerned about returning to school at the end of August. Little kids are very prone to carrying "little germs". I was on Enbrel from Jan-April and Humira from April to July, now the MTX and Remicade. I did not get sick any last year except for the severe PA and mild pppp. I was very diligent about washing my hands and using antibacterial wipes on the desk around the computers. But sometimes the kids came to lab with runny noses, stomach ailments and such. A lot sneezed on the computer screen and cleanup was interesting.

When I first started taking MTX (12.5mg a week) I felt tired and had stomach issues, but after the sixth week it went away. I also take folic acid daily. My rhemy at Duke started the Remicade due to the PA progressing at a very fast rate.

Talk with your Doc and I hope you find the right med that works for you.

Have a great day!
Cindy