Just had first Infliximab infusion

Everyone on the forum has different personalities and different perspectives, which makes us a team. Admittedly, I am a straight shooter. I'm not usually a "there-there everything will be all right" type of person (every once in a while I am). To explain where I come from more, I was diagnosed with a different autoimmune disease 25 years ago. The doctors and specialists gave me a lot of that "there there" crap and blew a lot of false sunshine up my butt and I got nowhere with my disease. After gaining a lot of knowledge about the disease I realized that a lot of the things they were telling me were mostly lies packaged with false hope. I eventually learned enough about my condition that I was able to put myself in remission after all of the doctors were telling me that my idea would never work. I had the last laugh as I have put myself in remission now for over 15 years.

Fast forward to UC, my GI basically told me five years ago at diagnosis that I was screwed (not in those exact words) and suggested there was a lot of info I could find on the internet and the CCFA. I was so glad to have a doctor who told the truth, I mean, what doctor tells you that you can find info on the internet? No false sunshine up my butt, just cold hard facts and I really do appreciate his honesty. You can't make progress if you don't accept reality.

I do like to banter ideas around and bounce thoughts and ideas off others. There are several here who like to investigate facts and do research and I do enjoy this aspect. This is not a disease where you can just listen and don't question anything because the best experts in the business have no idea what causes UC or how to cure it. We can't make progress if we don't question things. The Earth is not flat and the sun does not revolve around the Earth. It took bold people to question the status quo so that as a whole we could move out of our caves and progress as a planet.

I find it interesting whenever it is suggested that this forum is only chock full of the hard core worst of the worst patients. First, the people saying this are the ones having problems themselves and have been in the hospital and come here looking for advice. They are HERE. There are several on this forum, including myself, who have had it bad in the past (my disease was not always mild) and even though we are doing better now, we continue to post trying to help others through their trials and tribulations so obviously we aren't the worst of the worst. I, and them, kind of feel a duty to pay it forward so that others don't have to go through what we went through ourselves at one time. Like most everyone else on this site I offer up advice not only from my personal experiences but the research I have done as well. Most threads have a variety of different opinions and advice and it's up to the OP if they want to listen to it or not.

If I'm lucky I'll be on remicade forever? Your depth of feeling really is quite extraordinary here, thanks very much.

I have no plans to stop this medication, I was simply making the point that my case will be reviewed after a year of this therapy. I'll have a colonoscopy and we'll see how well things have healed. I'm certainly not going to get into a situation where I commit to being on a certain drug forever or on the other side, only for a year. Who knows what the future holds, there is absolutely no need to get ahead of myself in this regard.

There are some excellent treatments in the pipeline most notably, site specific immunotherapy from Qu Biologics so there absolutely is hope for the future and over the next few years we are likely to see more advances in treatment.

Post Edited (Jonny_Murray) : 6/5/2015 12:41:59 AM (GMT-6)

mcfarl73 said...
You'd be lucky because that means that you have found a medication that keeps you in remission. Many people don't have that luxury. I've been on remicade since October 2013 and I've been flaring recently. It could just be a flare or it could be that remicade has stopped working for me. If remicade has stopped working I'm not left with many options. That's terrifying. Yes there may be new medications on the horizon that could treat UC for good, but who knows how long that will take. I pray that remicade continues working for me because it means I can live a normal life where I forget I have UC because I feel great. That's what I meant when I said if you're lucky you'll be on it forever. That means it's working which is not something to take for granted.

Sorry to hear that you are having symptoms and I hope that you get them under control asap.

Apologise - I have obviously taken what you said the wrong way, I took it in the sense of how can anyone on long term medication be 'lucky' but I absolutely take your point, if it works then that is a big positive. To be fair, given that you can still count the amount of time I've been on this medication in hours, I don't think I can be accused of taking it for granted.

In terms of future treatments, with Qu Biologics site specific immuno therapy, I understand that it is approx 3 - 4 years away from being widely available. Obviously that is not ideal but we are talking about a medication that has the potential to induce full long term remission allowing the discontinuation of all meds including the SSI therapy itself. The longest case of remission is still ongoing with no further treatment after 4 years. I never imagined anything like that would come along in my lifetime so fingers crossed!!!

Post Edited (Jonny_Murray) : 6/5/2015 5:30:28 AM (GMT-6)