Ny treatment update

So, I went too see my gastroenterologist today and discussed different treatments. He highly recommends I try Infliximab/Remicade along with another drug which begins with an m but I cant remember the name. Apparently its common to have this drug along with Infliximab. I wasn't going to have it as I have read so many stories about people going into remission and then having relapses as soon as the treatment stops. My GI reckons that because I've had such a rough time and such complicated fistulas, Infliximab long term will be really beneficial to me. He's decided that I should stop taking Imuran as I have been taking it for 3 years and I have still had major problems so all in all it hasn't done much. I am prepared to go along with his reccommendations as he has made it quite clear that we don't really have many options where my fistulas are concerned. They are extremely complicated and because they are in my rectum it has to be rested properly and I need stronger medication in order for them to heal. If they don't heal, I could end up having to have a stoma permanently and I really don't want to have to settle for this if there is a chance I can prevent it. I would be interested to hear from people who are on Remicade/Infliximab long term, to see how they are doing and what they think of it. Also whats the infusion like? does it hurt? Just want to know what to expect.



Ruth

Your talking about Methotrexate, its another immuno-modulator that people get when they react or dont respond to 6mp or imuran.

Remicade infusion do not hurt, its just like getting a bag of saline water when your dehydrated...They start off slow, and speed up the infusion of the medicine into your vein every 15 minutes, to where you finish at exactly 2 hours, if they are doing it right, you have to get on them to speed it up sometimes or you'll be there all day. There is nothing to worry about when taking remicade. If your dr has recommended, and long term I might add is a much better choice then stopping it, because of risks of developing antibodies and such. I mean honestly if your willing to suppress your entire immune system with imuran and methotrexate, you should have no problem coming to terms with a medication that only suppressed the inflammation cells, not the entire system, including un-needed cells. Its much safer in my eyes.

I have posted about the 'lymphomas' in one of the forums recently, check out the article, its not common. and if your severe enough to consider remicade, how are you going to worry about cancer 40 years from now when you have a severe chronic illness RIGHT NOW. It all depends on how severe your disease is and what you've been through. Plus they havent even proved remicade CAUSES the lymphomas, they have also brought up that it could just make the cancerous cells easier to detect...therefore not causing the cancer, but finding it.

My gastroenterologist mentioned the risk of Lymphoma. He said that in actual fact if you take the amount of people diagnosed with lymphoma and see how many of them have had drugs like Infliximab/Remicade you'll find that the amount who have had drugs is about the same as those that haven't so there is no firm evidence to support the theory that Infliximab/Remicade can heighten your chances of getting Lymphoma. He also mentioned what you said above, so I'm not too worried about that. Not too keen on rashes and muscle problems though, hope everything goes ok. Need to have a chat with my IBD nurse first to clear a few things up. I also need to have an MRI just to make sure there is no infection still present in my rectum where the worst of the fistulas were. If there is infection I can't have the Infliximab until its cleared up.


Ruth

Good luck, I have never had to take remicade or infliximab. I just want to wish you the best of luck.