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Remicade?

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Ulcerative Colitis
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Posted 2/7/2011 3:40 PM (GMT 0)
Ok soo here is the situation, im a 21 year old student and have been dealing with sever Ulcerative colitis for 4 years now. I was on a drug called Salofalk that kept me in good shape but unfortunately about a month ago i broke through and had an extreme flare up. Ive been in the hospital for 8 days now with an iv form of prednisone however it hasnt improved me much. My GI wants me to go on Remicade but im nervous about the side effects, i was wondering if anyone had any advice or experiences with remicade i should know about?
Posted 2/7/2011 4:40 PM (GMT 0)
If you do a search, you will find a ton of information on remicade. It seems to be pretty common these days. I have not been on remicade, I opted to go the 6mp route because I wasn't in dire need of treatment right away - I wasn't working at the time and I waited to get my 6mp levels were up. If you're really sick and can't wait, you may see great results with remicade and it can kick in quickly. The problem I see is that people build up antibodies to it, sometimes in months, sometimes years. It seems like it's a short term solution.
Posted 2/7/2011 4:45 PM (GMT 0)
Thanks, ive been hospitalized for 8 days now and they were trying some type of steroid through IV which was having some positive effects. However as soon as they tried putting me back on pill form steroids i started to get worse again, so now the doctor pretty much told me this was my last option. Im kinda freaked out about it but im hoping it works fast because to be honest, i just really want out of this hospital.
Posted 2/7/2011 4:52 PM (GMT 0)
friend of mine does Remicade every 8 weeks. It was the only drug that put him in remission. Trains Tri's on the side and is doing well. Maybe others can tell you more.
Posted 2/7/2011 5:38 PM (GMT 0)
I was on Remicade for two years - it brought me out of a really bad flare caused by pregnancy. I would still be on it, but I stopped taking it during my last trimester, then subsequently started developing an allergic reaction to it. But if not for the allergic reaction, I'd still be on it. I didn't have any side effects and I found the infusions to be quite manageable (and thankfully my work was accommodating).
Posted 2/7/2011 5:43 PM (GMT 0)
Out of curiosity how fast did it take for the Remicade to start working? Im getting my first infusion tomorrow and the hospital wont release me until they see positive results, and im so far behind in school already that idk how i will catch up. Im in my last year of university and am supposed to do teachers college interviews next weekend. Im hoping that the remicade will kick in fast eneugh that i wont blow my final semester and miss these interviews.
Posted 2/7/2011 5:43 PM (GMT 0)
I just started Remicade on 1/15 while in the hospital (getting it in the hospital it might be free!) It can be an expensive drug if you dont have good insurance. Anyway, it seems to be working when nothing else did, good luck!
Posted 2/7/2011 6:19 PM (GMT 0)
I just had my seventh Remicade infusion and it has been a lifesaver for me. I saw results after my first infusion. I have had no side effects, and I pray to God that it continues to work for me, because I have been hospitalized twice in the last two years with this nasty disease. It is really quite painless. Like said before: the only drawback would be if you do not have insurance, as it is very expensive. Thankfully, i have great insurance, and with the Remistart rebate program, I have not had to pay one dime out of pocket for any of my infusions.
Posted 2/7/2011 6:28 PM (GMT 0)
Thanks thats reassuring, I really cant deal with this anymore i have seen some improvements on the prednisone but not enough to live at all normally, and this hospital is driving me insane. I have good insurance for the time being because im a student and still covered under family plans, so i should have no problems in that area.
Posted 2/7/2011 6:46 PM (GMT 0)
I am one of the unlucky ones who had a bad reaction to it. about 7 days after my first infusion I developed excruciating joint pain from it... felt like my joints were being stabbed with an ice pick and I couldn't walk. I was terrified this side effect wouldn't go away, but after about 6 weeks it finally dissipated and I have had no lasting troubles. I ended up going the surgical route instead, which I am very happy with.
Posted 2/7/2011 7:08 PM (GMT 0)
Well thats less assuring, but at least good to have a heads up. Im really hoping to avoid the surgery for as long as possible, Im pretty sure that i will need it somewhere down the line though.
Posted 2/7/2011 7:22 PM (GMT 0)
Chris, are you male? i've read that Remicade can have particularly bad outcomes for young men, so that is something you may want to look into. Remicade also increases your chances of developing certain infections and cancers. sorry to be such a downer, but you should definitely do a rediculous amount of research before commiting yourself to such a strong treatment. we got the most information from our pharmacist and decided to skip the remi and have surgery instead. best of luck to you with this tough decision.
Posted 2/7/2011 7:34 PM (GMT 0)
what kind of particularly bad outcomes any idea? There is so much out there its hard to sort through. Ive been informed of a lot of the basic ones and even of the increase in odds in cancer and lymphoma but im pretty much past any other options, ive been hospitalized for a while now and honestly if its going offer me the option of getting better quickly, im going to take that chance. Also i believe i read that the effects are worse for younger teens and children, but not as bad for adults. I go for the infusion tomorrow so basically just hoping for the best now :/
Posted 2/7/2011 8:11 PM (GMT 0)
i can't say for certain and don't want to give false information. maybe it was just that the risks were multiplied for young men, or that there was increased infertility. i can't remember exactly, just remember a recurring theme in the research suggesting possible problems for young men in particular. i'm not saying don't do the remi, just be aware and keep extra close watch of any issues that may arise and don't hesitate to investigate further.
Posted 2/7/2011 9:10 PM (GMT 0)
I am going thru the TB tests so they can start Remicade, and am wondering the same. Is it a good idea? First the thought of the risk of limphoma freaks me out. And then how long will this work? Right now, at age 42, it's much easier to manage the surgery and be done with it rather than going thru this for another 25 years and then at 67 finding out that nothing is working anymore and have to do the surgery..... On the other hand, my symptoms are not as severe as some of the others. My stool is generally well formed and after going to the bathroom 3 times in the morning, I can stay off for the whole afternoon may be once in the late afternoon and once before bedtime. The biggest concern is the bleeding that just doesn't stop. But it's not stopping me from most of day-to-day things. SO surgery seems a bit drastic......So then, is Remicade the right way to go???
Darn it... why can't I just go bald like everyone else instead of this stupid disease??
Posted 2/7/2011 9:27 PM (GMT 0)
yah tell me about it, the past week has been hell for me trying to make a decision. I could possibly remain on the prednisone at 60 mg for a while and hope that i will improve, but so far the improvements on prednisone have been limited, slow, and generally not very promising. At this point in my life I dont want to be unable to go out and have as much of a normal life as possible, so i guess the risks with Remicade are something im going to have to face. Hopefully it works quickly and i wont have to stay on it though, but im not sure how that works and if remicade is successful, do they put me back on salofalk (mesalamine) when im stable? or keep me on it every 8 weeks permanently?
Posted 2/7/2011 10:32 PM (GMT 0)
I am currently taking Remicade. I am about to get my 6th dose. Unfortunately it doesn't seem to be doing that much for me. The nurse at my GI's office says she sees success in about 50% of patients, but that is just her own patients and by no means a reliable number.

This is the bad outcome that was mentioned earlier...

Postmarketing cases of hepatosplenic T-cell lymphoma, a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers including REMICADE®. These cases have had a very aggressive disease course and have been fatal. All reported REMICADE® cases have occurred in patients with Crohn's disease or ulcerative colitis and the majority were in adolescent and young adult males. All of these patients had received treatment with azathioprine or 6-mercaptopurine concomitantly with REMICADE® at or prior to diagnosis. Carefully assess the risks and benefits of treatment with REMICADE®, especially in these patient types.

http://www.remicade.com/remicade/global/hcp/hcp_queries.html
Posted 2/8/2011 2:37 AM (GMT 0)

I was 30 years old when I was first diagnosed with UC, that was 7 years ago.  I have been through many flares, but last year I ended up on high dose steroids (gained 25 lbs.), enemas twice a day, and max dose Lialda from May until September - which is when I had my first Remicade infusion!  It was as if my disease process went away after my infusion.  I went to the bathroom 9 times before noon, I had my infusion - where I went 3 times, and after my infusion I went home and did not go to the bathroom again that night!  I slept ALL night and had 1 bowel movement the next day.  I thought that I must be constipated or have a bowel obstruction!  I started out with an infusion every 8 weeks and now I am every 7 weeks.  I take 4 Lialda a day and that's it! (I take alot of vitamins)  It is VERY expensive but I have great insurance.  AccessOne also provides reimbursement depending on how much you have to pay.  I have not had any side effects and I do know that people have developed problems where they have had to stop Remicade, but it truley has given me my life back!

Posted 2/8/2011 4:09 AM (GMT 0)
I experienced the same thing! The next day, one long bm, and I was done for the day. The day before I was so very sick. I was on Remi for 5 1/2 years, and my last colonoscopy in August 2008 showed that my colon was healed of ulcers. I have another c scope on Wednesday; we'll see how I've fared just taking maintenance meds (Asacol.) It was a great med for me!
Posted 2/8/2011 4:09 PM (GMT 0)
I flared on taking 12 Asacol pills a day last year and changed to Lialda (4 monster pills a day).  Even with Lialda, the drug company has a reimbursement program.  Why/when did you stop the Remi? I am sending good thoughts your way for the next scope!
Posted 2/8/2011 4:14 PM (GMT 0)
Hey Mama, welcome to Healingwell! I stopped taking the Remicade in October 2010, because I had a reaction to it. My GI wanted me to stop taking it after my cscope in August 2009, but I was hesitant because I knew how well it made me feel, and I didn't want to go back to being as sick as I was. So I stuck with it, but I suppose the body just didn't want to do it anymore. Because I knew I'd be changing insurance and doctors in January, I decided to just take the Asacol until I saw my new doctor, and he is the one asking for  another cscope. So, tomorrow will tell the tale!

Posted 2/8/2011 8:46 PM (GMT 0)
Well first dose of Remicade is in me! No immediate side effects to the infusion so now i guess its just a wait to see results, thanks everyone for your input and for sharing your experiences with remicade, its been both reassuring and has helped me make my decision, now im just going to hope for the best and a quick return to (somewhat) normal life!
Posted 2/8/2011 8:48 PM (GMT 0)
Excellent! Good luck and I wish you the same good results that I had!

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