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so afraid of remicade

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Posted 10/12/2011 2:43 PM (GMT -5)
Hey well at the end of the road for normal medication tried it all but its remicade time.

So afraid of this drug doesn't seem natural to me so worried of bad side affects have young family and don't want anything bad to happen.

Can anybody tell me there history with remicade could really help my decision thanks

Posted 10/12/2011 3:11 PM (GMT -5)
I hear you and I would be afraid too. You can start it and always quit and move on to surgery if needed. I had surgery long before Remicade was ever a treatment option and can vouch that it's a good option. No more meds, no more cycles of illness, and no more restricted diets.

Sue
Posted 10/12/2011 4:23 PM (GMT -5)
Remicade can cause deadly infections. It's a very small risk for most, but it is still a risk.
Posted 10/12/2011 5:19 PM (GMT -5)
I was on Remicade for a little over a year. It never put me in remission and I kept going for the infusions in hopes that it would start to work because it was my last resort before surgery. I'm glad it didn't work because if it did, I would probably still be on it and I didn't like the risks connected to it. It's a very powerful drug. That being said, my mother has been on on it to treat her rheumatoid arthritis for about 6 years now and has no side effects at all from it. And it really works well on her RA. She has no choice but to take it though....at least I had the choice to go off of it and have surgery. I worry about her being on it long term.

It also hasn't been in use all that long...it was approved for use in 1998 so no one really knows what long term it can do to someone.
Posted 10/12/2011 6:45 PM (GMT -5)
bowiestar, I haven't used Remicade but I was going to last time I was flaring. I am already on 6mp and Asacol and I use rectal meds... I had a lot of bad side effects from prednisone and the last thing in the world I want is to ever go back on that awful drug. I know some day I may have to but hopefully I can stay in remission for a long time. I was very scared to start Remicade, mostly because it's a fairly new medication and I don't feel that thorough testing has been doe to know the longterm side effects. In reality though, not many medications have been around THAT long. I take all different medications, depression medication, sinus medication, migraine medication, GERD medication... I am not sure why Remicade scares me anymore than anything else but for some reason it does. Many doctors have told me I should opt for Remicade over 6mp because Remicade is safer. I hate taking 6mp too and it's an older drug.
Posted 10/12/2011 7:48 PM (GMT -5)
I thought I would post a positive.

I was on Remicade for almost 6 years and it put me in complete remission. For those 6 years it was like I didn't have the disease except for going in for the treatments. It is a scarier drug than some others we are on, but you have to weigh the risks and benefits with your situation. For me it gave me my life back. It has been 12 yrs since my first dose and knock on wood, no known complications or side effects from being on it.

I am now on Humira for the 2nd time. The last year I really put off going back on any of the stronger drugs not wanting to be back on a TNF med, but now I am glad I did. I think about over the last year the lack of quality of life I had and how well I am now and to me and my situation it is worth the risk. I am mad at myself now that I was so stubborn. I spent a year not traveling, limiting what I could do socially, mostly not working, and staying at home a lot. Now being back on Humira for 4 weeks I am in remission and living my life. Hiking, going to social events, and applying for jobs.

Everyone's situation is different, but if you aren't ready for surgery or it isn't an option Remicade may be a good option. There are a lot of people it has worked well for and given them back their quality of life.
Posted 10/13/2011 6:08 AM (GMT -5)
It has been a life saver for me. NOTHING else works but Prednisone and it is is the evil empire. It hasn't been 100% but it has managed my flares to almost non existant symptoms for over a year. No pain, just random symptoms here and there that don't alter my life. I do get arthritis pain in my knees from time to time since starting it.
Posted 10/13/2011 1:58 PM (GMT -5)
remicade gave me my life back. i was so ill and i noticed improvements after my first infusion. my nurse said i have been one of the quickest turn-arounds that she has seen. i was such a mess when i went in (no sleep and skin/bones) and i am feeling so much better. i've had 3 infusions so far and i don't know how long they want me on it for. i still take 6mp and prednisone, too, so i hope i can get off of everything once my inflammation is gone.
Posted 10/13/2011 2:31 PM (GMT -5)
sulfasalazine/asacol/lialda gave me kidney disease, prednisone and imuran gave me liver disease, so far no major side effects from remicade (I did have some nausea and headaches after the first few infusions, but do not anymore).

good luck in your decision.
Posted 10/13/2011 3:31 PM (GMT -5)
It helped me tremendously. Prednisone never really did (on it's own), but helps more now that I'm on the Remicade. After each infusion (recently had my 4th), I improve and feel like I'll be in remission (or close to it) after 2 more. Started the Remi when I was at my absolute worst, and my desperation got me over my fear of starting it, and now wish I had started it earlier. Everyone's different, we all know- for me, the only side effects are some knee joint pain every month or so, for a few hours and then that's it.
Posted 10/14/2011 12:17 PM (GMT -5)
My doctor was not a fan of Remicade.
He kept it as a last minute resort. After 3 weeks in the hospital with no sign of getting any better, he offered me remicade or surgery. I picked remicade. Right off the bath he told me he wanted me to have a total of 5 injections. I got my first one that day, and 3 days later I could poop again! I started eating better and a week later was out of the hospital. I did my 5 injections and never went back. My doctor keeps me on purinethol now. Of course I was on prednisone, dilodill, codeine mix for a while but it's all gone now. Bring warm clothes with you if you were to choose to go for it, the liquid is chill and it will get you colder than usual.

It might be a good way out of a crazy flare. My mucus was almost gone over a feet long of my intestine and 1 month and half after I barely had any ulcers left...

Good luck.
Posted 10/14/2011 5:30 PM (GMT -5)
I have also had a positive experiance with remicade. I have been on it for over two years now.  I had severe uc throughout my whole colon.  My last scope in Jan. 2011 showed only mild inflammation on the right side of my colon.  No ulcers.  I was having accidents and going to the bathroom 10 plus times a day.  Now I go about four and the three are usually right in the morning.  I still worry when I am out(like I am going on a cruise and am alittle worried) but I think that is normal.  I have to take zyrtex because I get a rash and I am premedicated before my infusions. But I understand it scares you.  I don't like it either but it is what it is.  Good luck on your decision.
Posted 10/14/2011 5:49 PM (GMT -5)
Remicade helped me for a good year, then just quit. Don't be "afraid" of it, but do be aware of the things that can go wrong. Any sign of infection, no matter how mild it seems, needs to be checked out by your PCP ASAP. Sinus, wound, etc. Some people feel the possible negatives outweigh any possible positives, & there's no way to argue with that. But if you feel the positives outweigh the negatives, go for it. When it works as it should, it's like a miracle.
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