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REMICADE LAST RESORT??

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Crohn's Disease
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Posted 10/27/2010 5:23 PM (GMT 0)
Just got back from appointment with GI

Said if the Entocort EC doesnt work (three month regiment 3-2-1) I will be going on the Remicade.  I have read horror stories about Remicade. Can anyone tell me side effects? Is it really that expensive? What is it suppose to help?

The GI told me I would probably be on that the rest of my life.   Either he isnt being honest about how severe my Crohn's is or he thinks this is my Last resort.

Thoughts please?

 

Posted 10/27/2010 5:56 PM (GMT 0)
We have MANY members on Remicade. I wouldn't freak out so much about the side effects, they have to list those. Read the side effects on Tylenol and you would get freaked. Remicade is expensive, but they also have a patient assisantance plan to help with the costs if you do not have insurance. Good luck!
Posted 10/27/2010 7:58 PM (GMT 0)
I've been on Remicade for 2 1/2 years. It has given me my life back. I haven't had any side effects from it. It was scary to me at first too. I think any new drug can be scary. Fortunately I have good insurance. There is assistance if you need it. Ask you doc.
I felt like it was a last resort at first, but looking back, I wish I would have started with it rather than try a pill, do well for a while then flare. Then try a dfferent pill, do well for a while and flare. I've been flare free for 2 1/2 years.
Good Luck!
Posted 10/27/2010 10:57 PM (GMT 0)
I was on it for 6 & 1/2 years. It gave me my life back too. Worst side effect I ever got was very mild sinusitis (chronic post nasal drip, but never stuffy or runny). It saved me from surgery (along with SCD) and I was even pregnant and nursed two babies while on it. I wouldn't be scared. I've never heard any "horror stories". Sure, people have had reactions and not been able to keep taking it, but it's really not "that" scary of a drug. It's basically an anti-inflammatory drug. I highly doubt that you'll be on it for the rest of your life because to be honest... it won't last that long. It will eventually start to lose effectiveness and your body will build up a tolerance to it and it won't help you as much (or at all) any more. How long that will be depends entirely upon your body. I've read here of some people only lasting 2 or 3 years, but I went 6+ and I even read someone on this site say they took it/have been taking it for 10 years.

Have you had a colonoscopy lately? What are your signs and symptoms? Ask your doctor why he feels that remicade is the next step. I think if you get more answers from your doctor you will feel better about the decisions that lie ahead of you.

Stef
Posted 10/27/2010 11:16 PM (GMT 0)
I was also scarred to death, I have really bad reactions to cd drugs, but this one has helped, I just recieved my 4th dose on 25th of oct. but I started flareing horribly after 6 weeks of 3rd injection. I have cd in throat as well so I have had swallowing problems, and rem has helped that part, i could swallow not bad after 2hr's of injection, really wierd how that helped, the only thing that bothered me is after first 3 injections i had body aches flu like symptoms after ea. injection, and I had bronchitis after every injection and I needed antibiotics, this time it feels different, this is day after and i feel great (haven't said that in 1 1/2 years) I don't feel like i will get bronchitis or flu like symptoms. don't be afraid to try if ins. will pay go for it

Posted 10/27/2010 11:20 PM (GMT 0)
I've been on it for almost 1.5 years with no side effects. My infusions are billed to my insurance company at a little over $15,000 each. The insurance company pays the infusion clinic around $11,000/each and they write off the rest.
Posted 10/27/2010 11:47 PM (GMT 0)
mine as well, you can go thru remistart program and they send you debit card and it's $50 co-pay per, I applied for ssdi so we'll see if medical picks it up for me, my lawyers told me my 2 dr reports were favorable so they sent in my reconsideration, I was denied first time. lawyers don't seem to think it will go past appeal, my dr reports we're very graphic on what my daily life is and how it affects all aspects of daily living

Posted 10/28/2010 1:31 AM (GMT 0)
I have been on remicade for a yr now. After the 4th or 5th dose it started losing it effectiveness. I would say it would work for 3 weeks out of the 8. In the beginning of this yr my doctor got it bumped for me to every 6 weeks. it now doesnt work for me at all. I see my doctor tomorrow. I am hoping he can prescribe me LDN. Otherwise he wants to do surgery. I unfortunately have a very resistent CD. Any drug I have been on only works for a short period of time and loses its effectiveness very quickly. I tried humira and it only worked for 2 weeks :( I never had any side effects from it really. Since being on it though I have begun to get strictures which I am pretty stressed out about. I have never had any problems with strictures ever, since being diagnosed. I do believe it is due to the remicade. My body wasnt used to going from diarhea to formed stools in a day. I think it was too much for my bowels to handle.

Hopefully if you do go on it you will have better luck than I did. Wishing you the best.
Posted 10/28/2010 4:36 AM (GMT 0)
Remicade was the best medicine I ever had. I was on it for three years but had to stop because of some weird swelling. It is expensive, but well worth it. If I could start therapy with it again, I would in a heartbeat. The first time it a little nerve wracking, but you will feel so much better. And it's much easier to live with than taking steroids all the time.
Posted 10/28/2010 12:40 PM (GMT 0)
I have been on remicade for almost 6 years and still going strong!  I have had no side effects.  The reason your dr. said it was for life is because you will be on it until it is no longer effective or until you have a reaction.  Remicade gave me my life back!   After I meet my deductable, I pay nothing for my infusions.
Posted 10/28/2010 1:12 PM (GMT 0)
edacimeR, I evah neeb no ti rof 5 sraey ,,,,ton eno edis tceffe , teY ....Don't worry dude they keep a close watch on you. Blood work an such . I would not be walking or riding my harley without it. Also if it stops working there are a few other alternatives ..
Posted 10/28/2010 1:23 PM (GMT 0)
this is my second morning after my 4th infusion and my bowels have slowd, but I'm not used to that, so it worries me, when i tried pred this year for 4 months it slowed down bm's to where I was in so much discomfort from not going that i hated it, so for me It seems that i have to get rid of all the left over bile from the night before, so we will see, i know rem has helped my throat like magic, i can swallow without fear of choking or food getting stuck, not normal but I guess it is my new normal, I've lost 15 pounds and I'm small anyway so i need to eat, my dr's are more concerned with weight loss than anything right now, so they said do whatever you have to do to eat, but it's hard to eat when you're scarred that food will get stuck in throat, I had emergency endoscopy to unlodge piece of hamburger at 8 at night last week. I can't stand bloating stomach, much prefer 2-4 bm's just to feel right

Posted 10/28/2010 8:15 PM (GMT 0)
I was scared before I ever got on it. I have been on it, I believe, two years next month and it has literally given me my life back. I now have days where I even "forget" I have Crohn's. Before the Remicade, I tried MTX, Imuran, Prednisone, Pentasa--nothing helped me much until I got on Remicade. It is pricey, but depending on your insurance benefits, it is well worth it. A typical infusion for me is about $4,000. I have a maximum out of pocket of $3,500 a year so once I reach that, everything is covered 100%. I have used the Remistart program (this year) and Patient Access Network (last year) to help cover costs. Your GI's office should have information on these plans. Best of luck to you!
Posted 10/29/2010 10:27 AM (GMT 0)
so, when it lose its effectiness, people come back sick again?
Posted 10/29/2010 12:42 PM (GMT 0)
I had been on remicade for 6 plus years and it worked wonders for me, but during this time I was wearing a colostomy due to a failed reanastamosis,(reconnecting my intestines after a blockage was removed). In july of 09 the colostomy was removed and after several sugeries, dec. 09 life was good. I haven't had to have treatments all year untill now, crohns is back and possibly a fissure. So I am going to be trying Cimzia next week. So all I can say is remicade worked for me. The only reason I am going to try Cimzia is for the ease of injecting myself, compaired to a 4-5 hour IV drip. Good luck to all that have this terrible and painful condition.
The power of focused thought and prayer are amazing and I would recommend this approach to anyone that has an open mind to getting, and staying in remission.
Posted 11/7/2010 4:51 AM (GMT 0)
Well, I hate to scare you away from the drug because even after all of the suffering it has caused me, it was my miracle drug for Crohn's! While I was on Remicade, I was diagnosed with cancer. Could I have had the cancer before I started the Remicade? Sure, it's possible. But there's a lot of unknowns with Remicade and cancer. I've spoke to some doctors who said the Remicade directly caused my cancer; other doctors have said that being immuno-suppressant from the Remicade is why I got the cancer; must also add that I was on 6MP at the same time, and I had another doctor say the immuno-suppressant from the 6MP is the cause of my cancer. Honestly, know one really knows.

If doctors would let me? I would go back on Remicade immediately. Without it, I flared right back up and now have an ileostomy with my life on hold. I'd say the benefits outweigh the risks, but hey, that's just me. :)
Posted 11/7/2010 6:18 AM (GMT 0)
RiddleMeThis, what kind of cancer do you have? I have been on remicade for almost 7 years now and have tried all of the other ones except for tsabri. It is the only one that ever given me any relief. I am so sorry that you have cancer but please know that the amount of people that get lymphoma from TNF-inhibitors are an extremely small percentage of people. I really hope that you are able to get your cancer into remission if you have not already. For Harleyguy, I would not even hesitate to use remicade if your insurance has already authorized it for you. There is so much more known about remicade since I originally started it and many of the original fears have been disproven. I get mine at the max dose of 10 mg per every 4 weeks and am still getting benefit from it. It was also thought that once you stop using remicade, you can not go back on it. I am living proof that you can go back to it and not everyone will have a reaction to it like originally thought. Please do not believe all the horror stories that you hear or read. Even RiddleMeThis put that she would go back on it immediately if her doctors would allow her.
Posted 11/7/2010 7:25 AM (GMT 0)
tsitodawg- I have thyroid cancer. It's considerd to be the good cancer. I really dislike the term 'good cancer', but it is true. Very good prognosis for most forms of thyroid cancer. Still a pain though! Yes, I am well aware that many people do not get cancer from being on TNF inhibitors. Every doctor I have talked to, including several GI's, said I am their first patient to be diagnosed with cancer while on Remicade. I am an outlier! :) Yes, the cancer can be called officially in remission. Just the follow-up blood work and ultrasounds for about the next 5 years. :)

I would definitely go back to Remicade in a second! No other drug has worked for my abscesses and fistualas. Remicade is a miracle drug!
Posted 11/7/2010 7:36 AM (GMT 0)
I had a special pen friend who developed thyroid cancer, and she told me a fair bit about the treatment, including the weird sensation of being locked away from the world while being radioactive, and being forbidden contact with pregnant women and small children for a period of time. Did you have to go through that too?

I'm so happy that your cancer is in remission, but sorry that you need to stay off immunosuppressants. How are you coping with Crohn's symptoms? Are you able to keep them under control so far?

Yes, even here it seems to be very unusual to get cancer while on anti-TNF meds. I think you may be our second member to have had this happen: the other person was Mike (MikeB?), who developed lymphoma. Last I heard he was undergoing chemo, and I don't know what the outcome was.
Posted 11/7/2010 8:03 AM (GMT 0)
Yep! I called it my isolation :) I had to use my own bathroom, stay in my room, absolutely no contact with children or pregnant woman. After my isolation was over, I had to wash down everything I touched. It wasn't terrible, I had a chance to read a book or two!

Unfortunately, going off the immuno-suppressants has effected me greatly. about 4 months after I went off the Remicade, my peri-anal fistualas started to act up. The doctor went in to insert some setons, but she was unable to, the entire area was a complete mess. Now I have an ileostomy. We are experimenting wth different medications, topical creams but nothing is working. I've just recently started packing the abscess with hydrofera blue. My life is pretty much on hold now until we can figure something out. :)
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