Remicade personall experiences please...I'm a bit freaked out.

Can you be more clear about your situation? I take it you are one of the CD folks who gains weight rather than lose it?? Are you wanting to lose weight or gain it?

My neighbor is on Remicade and swears by it. She said it saved her life and probably would have been dead by now if her doctor didn't finally diagnose her and start her on Remicade right away. She does not have Crohn's Disease but another type of Autoimmune Diseases. She is a very small person and since starting Remicade 2 years ago she has lost almost 30 pounds. She is a very small person anyway so losing this weight probably isn't the best for her. I'm looking into going on Remicade and I was told you can lose weight from it but was never told I could gain it. I texted my neighbor about this post to ask if she heard anything about weight gain and all of the people she knows in the infusion room while she is there have all lost weight or stayed the same but never gained. So let's hope you do not gain anything. If you do gain a little from what I've been told it would be worth it!!

I'd like to state the obvious first. C/d is not the way to lose weight.
I am 5' 8". At the end of January I was 167 lbs. At the end of February I was 142lbs due to a bad flare. It did not look good as I was losing as much muscle as fat. Made me look like 75 years old instead of 49 years old. I started remicade and now I am back to 167lbs today. That is good in that I am healthy but I wanted to hold my weight between 150 and 155. While many have said that gaining weight comes witht he remicade I have to remind you that unless it is water weight you can't make something out of nothing. If you eat 1200 calories a day and walk or exercise 1500 calories you must lose weight. You can not create fat from nothing. It is true that some folks burn more calories at rest than others but that doesn't change what I said. I know that I jumped up to this weight because 1- my healthier gut was absorbing nutrients instead of pooping out everything I eat and 2- my favorite ice cream has been on sale and 3- I am eating a lot.
This is what I believe anyway. I feel you being at 200. I am having a tough time holding 167. I'd rather be 200 than the PAIN and ill health I had in February. I wish you well.

I was on Remicade for about a year and a half and had no real side effects (weight or otherwise).  The worst of it was being tired after the first few infusions, but that was more likely due to the iv benadryl they gave me beforehand to prevent a reaction (I'm pretty sure they also gave me tylenol before hand).  Remicade induced my first remission.  The only reason I stopped is because it seemed like I was entering another flare.  My doctor wanted to get a capsule endoscopy to see what was going on, but my insurance wouldn't approve it, even after my GI fought with them for a few months.  There are risks associated with Remicade and since I appeared to have stopped responding to it, my doctor and I decided to stop it.  about 6 months after stopping it, I finally got approval for the capsule endoscopy and it showed that my crohn's was actually still in remission -- it turned out that I had IBS on top of it.  If it came to the point where I needed another biologic, I wouldn't hesitate.

As an FYI, I know a few people (a colleague, a child of my mom's friend) who have entered and maintained remission via remicade alone (neither of them had side effects either).  It was their stories that made my decision to try it easier.  I was still nervous, but excited at the prospect of remission too.

I hope your experience is successful and side-effect free too.

Melissa

The side effects are overstated apparently. This video is an excellent resource that helped to alay my fears. http://programs.rmei.com/CCFA139VL/start.html
Cut and paste that link.

Seems like I have had bad reactions to many of my meds though so I still worrry.

Remicade was a miracle drug for me for 2 whole years! Those were the two best years of my Crohnie life (8 yrs and counting). I never gained any weight on it nor did I have any other side effects. Finally, it stopped working for more than about 3-4 weeks, so I had to try Humira, then lost Remicade. I'd say, give it a go! Maybe it will change your life... If it doesn't work or the side effects are horrible, you can always discuss stopping with your GI.

I have been remicade for 6 years with my infusions being every 4 weeks at the 10mg per. I had a year hiatus when I went off of it to try humira and then cimzia but my doctor put me back on it and I am doing really good with it. My dose is the max that you will find and some doctors consider it too high, so I can be confident in answering questions about the side effects. It is a great medication and it does have side effects. The day of infusion and a few days after each one, you will have a high likelihood of having flu like symptoms with body aches and possibly night sweats. Some infusions are harder than others but after those few days the flu like symptoms disappear and you should notice a difference in your Crohn's symptoms. It is a medication that needs to build in your body and typically takes 3-4 doses after the inital loading doses before you start to see max effectiveness. Some people see results right away after the first infusion but that is not typical. Because it suppresses your immune system you will most likely get more small colds or congestion but you can avoid a lot of the side sickness or infections by just being careful who you are around. That does not mean that you have to avoid people, but if you know that someone is sick with something contagious you should ask them not to come over or avoid them. I also wash my hands frequently and use hand sanitizer a lot, which is a good hygiene practice for anyone.
You will probably start out having your infusions every 8 or 12 weeks depending on your doctor and I would make sure that your schedule is light or clear for a couple days after. Remember that not ever side effect that you read about in the brochure or on here is going to happen to you. The drug makers have to list ever possible one to avoid lawsuits in the future. Remember that some of the side effects I have may be more severe because of the large dose I am on or may be different for you because of your other medications. I would ask your doctor to premedicate you with benedryl to avoid any interactions during or after the infusion. It also helps you sleep for a while and helps pass the time. We are about the same weight and you should plan on about 3 hours for each one. As for the weight gain situation, I would not worry about that. Once you start the Remicade, you should be able to taper off of the entocort which is a steroid. That should help you lose some unwanted weight and water retention that all steroids cause. If anyone were to gain weight while on remicade it would be because they were way underweight to begin with. Their bodies would have been malnurished due to the constant D. and now they put on weight because their bodies are becoming healthier. I would expect you to lose rather than gain/

My Daughter has been on Remicade (single, double & currently triple dose) (Imuran & Asacol too) for 7 years now. She has not gained one ioda of weight from it. But then again she really did not gain much weight on Prednisone either. She has the metabolism and genetics of her Dad which means she will probably always be on the thin side.

With the exception of Prednisone, not sure many meds actually really cause weight gain. It is the patient feeling well on the med and being to eat again without ill effects.

I can't really for sure say that Remicade has caused side effects in my Daughter except maybe within the past couple of years as it has been losing its effectiveness, hence doubling and tripling the dose. She has had no adverse reaction to it. When she gets close to the time of needing it her IBD symptoms kick in.

That said, in the long term of being on immunosuppressants, she has developed other health issues.

Remicade for the most part has given her quality of life. Not 100%, but way better than she was for the 4 years of non-remission before Remicade.

Thank you so much everyone.  I was scared ****less about this, and pun was intended as the stress gave me a very rough evening.

This whole thing about slowing down/turning off the immune system is..........well I know you guys get it.  I will have to explain it to some people at work.  I got so angry at a friend of mine 4-5 weeks ago as he walked around work saying "I'm sick and getting sicker" and I was like, go home then and he said, no, I'm gonna stick it out.  Well when he came back to work I kinda yelled at him, that my risk was worse than ever with the pills I am taking.  Now that whole situation will be even more so.

I don't know if this will help any but in the beginning years of Remicade for my Daughter it actually enhanced her Immune system and she was better able to ward off colds, viruses, what have you than she had been able to before Remicade.

Fast forward some years and it seems her Immune system has whacked out from long term use of Remicade and Imuran. A crazy Catch 22. Keeps her IBD pretty much in check, but she ends up with other ailments instead. I sort of attribute her more wacky immune system
to moving to NYC to live and work. Germy subways, working more with the public. Would it be different if she moved back to Michigan?

I was in the same boat as you just recently, in May they wanted me started on Remicade and I was freaking out internally cause I know it's a pretty strong drug and all the same things anyone thinks getting something new.  I'm only two infusions in and the nurse said alot say it takes til 4 to see improvement, but I notice a bit already and I'm actually really excited now---since my sick days are getting less and less (knock on wood) already and I like that.  The pain is also significantly down for me too and THAT means alot to me.

The whole shutting down your immune system does worry me as I am a housekeeper in a hotel and you can imagine what all I have to clean and come in contact with but I am pretty sure Remicade isn't the first med with this effect I have been on and so far no problems, it's all good.  Really so far its just like popping any other pills and hoping they work, all the same thing, same risks...except this one takes a little longer then just popping a pill, lol....even the infusions are pretty harmless, I find it good quiet time to just sit and read a book.

You are going to get a whole lot of different answers as to what cost is. No cost to my Daughter because her insurance picks up the cost. The cost varies widely across the US to my knowledge. The cost varies also whether you have the infusion done at an infusion center or in a GI's office.

Just for instance when my Daughter still lived in Michigan and was getting single dose Remicade in her GIs office the cost to the insurance company was about $2,000. In New York City where my Daughter is now and getting triple dose Remicade at an infusion center, the cost is about $13,800.

Some insurances are picky too, some will pay for Remicade if only done in a GIs office and some will pay only if done at an infusion center. We had to play that game when our Family insurance changed.