GI said Remicade would be a life-time thing for me....?

[EthanPSU]

So, Yesturday I went to my GI for a check up and when I asked how long I would be on remicade (because I see a bunch of people on here have been on and off) he said that it would be a life-time thing for me.

I was just wondering if anyone else has been on remicade for a very long time and if you were told it would be a life-time treatment?

 

[Lisa]

Yes Ethan...that is what I was told....although, you can go off it - but there are no guarantees that you can start it again due to reactions.....

 

[dreamintwilight]

I'm on Humira, which is also an anti-TNF med, and I was told I'd be on mine forever too. Unless a better treatment came around or better yet a cure is what my GI said Yeah, it's kind of a shocker at first thinking about the fact that you'll be on this medication "forver," but you get used to it after a while.

And yeah...lots of people end up going off of Remicade for various reasons, some due to the fact that it stopped working for them.

 

[ameslouise]

Yes, it is my understanding that the Anti-TNF drugs are "forever" or until they stop working. If you stop and then start again, there is a chance you would have develope anti-bodies and will not be able to tolerate the drug again.

I liken it to an insulin dependent diabetic who has to take a lifetime of insulin shots. That made me feel a lot better about having to be on a drug for the rest of my life, providing it works and continues to work.

- Amy

 

[dreamintwilight]

I agree with Amy on how to internalize it. I looked at it in the same way, or even people who use Humira for arthritic purposes. It made it a lot less crazy sounding in my headand easier to deal with.

 

[EthanPSU]

Im completely fine with it being a life-time thing if it keeps working the way it is lol.

 

[saidinstouch]

Only the remicade is truly a "life-time" thing. Basically it is a chimeric antibody meaning it has part mouse protein in it. Once you stop, your body can recognize the mouse portion of the protein and make antibodies to it, leading to a serious reaction. Humira, Cimzia, and Tysabri(not anti TNF, but similar protein) are humanized proteins. This means they made the protein look to be almost completely human with such a small portion of mouse protein, it is nearly impossible for your body to detect it as foreign. This leads to your being able to start and stop as necessary. If a doctor tells you that you cannot start and stop these medications, they are simply misinformed and should be corrected and told to research the differences in these proteins to properly understand. A lot of doctors don't understand the difference and think what holds true for remicade is also true for these other medications.

Now, as far as needing them for life, that is true. Until a better treatment comes out, once you stop these drugs, within a month or two tops, you will lose their effect and need to start something else. This is sadly unavoidable, so if you stop one of these drugs you do need to move onto another drug for maintaining your crohns.

 

[EthanPSU]

Remicade lasts for 3 months I think

 

[Starlight]

3 months?? I get infusions every 8 weeks and have been on remicade for 4 years.

 

[EthanPSU]

Lol I have no idea....just throwing ballparks out there

 

[CrohnsHobo]

I wish it lasted life long. When it worked it was great. Alas, after four years it stopped. I started at every 8 weeks, then 6, then 4 and then off.

That being said I did take it, then stopped for about 5 years and then back on it for about 4 years.

 

[CyCrohn'sGuy]

Ethan, my GI said the same thing to me. I was on Remicade for just over a year and felt great for 8 months. I started on 8 weekly infusions and after a hiccup in the middle somewhere went onto monthly infusions. After that the positive effects started wearing off.

I hope things stay great for you. Keep smiling.

 

[Lydia]

My GI says he has patients where it works well for many years. I hope I am one of them as I am comfortable with taking it now.

 

[crazycanuck]

Yeah I was told as long as it works Im on remicade and imuran. And I get infusions every 8 weeks but the last week before I go I tend to have more D so we are considering moving to 7 weeks so I would assume it would stay in the system a month give or take a week or two depending on the person.

 

[spingirl]

Is Imuran (or the generic version of it) one of those that you can go on and off or is it like Remicade with the mouse protein. Oh...the thought...mouse protein...I wonder if I will begin to tolerate cheese again! ...Sorry...I shoudn't be joking about such serious stuff. I just have to or I will drown in my tears...Everyone seems to be taking Remicade but I am taking Asacol and about to start Imuran with the Asacol since this flare is not goign away with the prednesone...and I can't keep taking that. I wonder what people that can't tolerate the Remicade do! I keep thinking that is my last resort. I guess surgery? I am trying so hard not to lose my colon. I know its coming...

 

[Naddie4589]

Imuran and remicade together?

My GI Doctor told me that taking remicade and immuran together can cause lymphoma so I had to wait 3 months for it to get out of my system before he can start me on remicade. Alot of people on here seem to be taking them together......

 

[dreamintwilight]

There is a small increased risk for developing lymphoma, but the percentage is very minimal. My doctor said there have only been like 24 known cases in the world. That's an extremely small percentage considering how many people are on this drug. It is slightly higher of a risk for men, I believe, but again smaller risk. For someone who is suffering a great deal and losing their quality of life - the small risk is something that many people and doctors are willing to chance.

I am taking Humira and Imuran together and just had a tremendously improved colonoscopy last Monday as compared to one I had about a year ago. There have been many studies to support the onset of remission happens more quickly when these 2 types of medications are taken in conjunction. You have to risk the risks along with the benefits!

As far as stopping and restarting Imuran...I believe you SHOULD be able to do this. Unless you stopped the Imuran for reasons involving intolerance of the medication, you should be able to take it again. I haven't heard of people developing a tolerance for Imuran as much as people developing a flare that is worse than the drug can handle. Maybe some would consider that developing a tolerance... Anyway, I think I answered your question. If someone has more definitive answers, please share.