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Just had first Infliximab infusion

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Posted 6/4/2015 4:13 PM (GMT 0)
Just been released from hospital today after 10 days. They started me on a 5 day course of IV steroids, which initially, I responded to. Unfortunately, when they converted my to oral steroids, my symptoms returned and I in a bad spot there for a while.

Got my first infusion of infliximab on Monday and it seems to be working very well, I actually started to feel better during the infusion and have been improving ever since. Just wondering about others experience with this drug. how long did it take to kick in for you and reach full effectiveness? Also how long do people tend to be on this medication? I have another infusion in 2 weeks then another at 6 weeks. After that I will receive transfusions every 8 weeks for a year, at which point treatment will be reviewed.

Post Edited (Jonny_Murray) : 6/4/2015 10:19:52 AM (GMT-6)

Posted 6/4/2015 4:23 PM (GMT 0)
Remicade is a maintenance medication for uc, so it can be taken indefinitely. Some here have been on remicade 6, 8, or more years. I've been on remicade almost 2 years now, and I get an infusion every 8 weeks.

Remicade can be very quick working on some. Others have to wait until infusion number 2 (at week two), or infusion 3 (at week 6) to notice improvements. It varies. I noticed small improvements a week after my second infusion, much greater improvements at 3rd infusion, and slow, steady improvements until I reached remission after a full year on remicade. Some might reaxh remission sooner, others may not achieve it.

It's a good idea to concurrently be on an immunosuppressive medication (such as Imuran, 6mp, or aza) to help prevent antibody buildup. Otherwise, remicade can loose its effectiveness over time, or just quit working all together. I'm on 6mp, as well.
Posted 6/4/2015 4:54 PM (GMT 0)
I am also on 6mp. I did ask my nurse about immunosuppresants stopping antibody build up and she said the evidence for this is limited,

I am happy it has worked so quickly in comparison which some others and so far I have had not noticed any side effects. I was actually really straight forward and effective - just a simple 2 hour infusion. i am also on pred at the moment so I am 'triple immune suppressed' as the doctor put it. Not the best place to be but certainly better than a full on flair!!!
Posted 6/4/2015 4:57 PM (GMT 0)
You have to take it forever, or until it stops working, whichever comes first. Stopping would be a huge mistake because you will get worse and many times you can not take this same med again if you have taken it before and then stopped.
Posted 6/4/2015 5:38 PM (GMT 0)

garylouisville said...
You have to take it forever, or until it stops working, whichever comes first. Stopping would be a huge mistake because you will get worse and many times you can not take this same med again if you have taken it before and then stopped.

I think I'll trust my GI for advice on those issues.

From what I've read online there seems to be a range of experiences on Infliximab some stay on it long term, others use it to get into remission and then go on to other drugs. I pretty relaxed about the situation, I'm just at the very beginning of trying this medication and so far so good.
Posted 6/4/2015 6:07 PM (GMT 0)
I know the UK is different but in most cases the reason someone gets on infliximab is because the other maintenance meds weren't working to keep the patient in remission. So far you have only mentioned IV and oral steroids and the infliximab. Have you done any other treatments at all? How long have you had UC? Standard procedure would be to try using oral mesalamines and rectal meds (sometimes along with steroids) and then if they didn't work to move on up the ladder. Infliximab is partly made from mouse proteins and many people can develop antibodies to it and then it no longer works. Doctors often prescribe Imuran or 6MP along with the infliximab to help protect against antibodies building up to it. Often if you use it and then quit your body does develop antibodies to it and then you wouldn't be able to use it again as a treatment option.
Posted 6/4/2015 6:26 PM (GMT 0)

garylouisville said...
I know the UK is different but in most cases the reason someone gets on infliximab is because the other maintenance meds weren't working to keep the patient in remission. So far you have only mentioned IV and oral steroids and the infliximab. Have you done any other treatments at all? How long have you had UC? Standard procedure would be to try using oral mesalamines and rectal meds (sometimes along with steroids) and then if they didn't work to move on up the ladder. Infliximab is partly made from mouse proteins and many people can develop antibodies to it and then it no longer works. Doctors often prescribe Imuran or 6MP along with the infliximab to help protect against antibodies building up to it. Often if you use it and then quit your body does develop antibodies to it and then you wouldn't be able to use it again as a treatment option.

I did make the point about antibodies to both my consultant and to my GI nurse and both said very clearly that the evidence in this area is limited. They have treated many hundreds of patients over more than a decade with this medication so I trust their advice. I'm sure you can appreciate that I'm trying to take a positive outlook - I started this medication less than 72 hours ago, its a bit early to be worrying about antibodies or it stopping working!!!

Oh yes - the reason we decided to start inflix is because I was no longer responding to the IV steroids and was really not well, I needed more of an instant result, which this medication has achieved.
Posted 6/4/2015 6:43 PM (GMT 0)
If at some point in the future you are going to rely on different meds to keep you in remission and discontinue the infliximab then you should start those meds before stopping the infliximab to see how they effect you and I would grill your doctor about which meds those will be beforehand so that you will know what to expect. Even then, the maintenance meds might not be good enough to keep you in remission. I would fully investigate the drugs he plans to use ahead of time.
Posted 6/4/2015 6:55 PM (GMT 0)
I appreciate your advice. At this stage I'm not looking too far down the road. I'm just out of hospital so for me, the first stage is to get off the pred and then I am happy with the continue with inflix/6mp until my review a year down the line. As with all IBDers you quickly learn that nobody knows what the future holds so I;m not going to get too ahead of myself.

Interestingly, the medical staff at the hospital were telling me that over here in the UK we are about to reach the point where the patent on these biological drugs is about to expire so there are likely to be a flood of new drugs coming onto the market in the next few years.
Posted 6/4/2015 7:16 PM (GMT 0)
Hi Jonny

I too live in the Uk, was admitted to hospital on Sunday on IV steroids for 4 days and now switched to 40mg oral pred. CRP reduced from 80 to 14 and is getting lower so looking to discharge me tomorrow. I have inflixmab on standby reat and waiting in case I flare again quickly after coming off IV steroids but the doc seems confident that I won't for some reason. Especially as the level of azathioprine in my blood should return to normal soon and then should hopefully work as it did before.

Unfortunately people like Gary have not been on the big boy drugs as they have been lucky enough not to have gone that far up the medicine ladder....yet. I am not having a go at you Gary but there are times were your pessimism and negativity are an unwelcome part of the thread. And I find it quite profound that you dish out the advice on UC like you are 100% confident on what you are talking about when you havn't even had first hand experience of the meds most of us have had to take. I commend you on keeping your disease in check with just mesalasines but don't dish out the pessimism to those of us that just want some supper whilst we lie in a hospital bed hoping for a miracle.

I hope you get better soon Jonny!
Posted 6/4/2015 7:22 PM (GMT 0)
Support not supper!
Posted 6/4/2015 8:01 PM (GMT 0)
Happychick: I don't see where I was pessimistic. I was realistic. I have studied this disease quite a bit for almost five years now not only on my own but by reading everyone's posts on here for those five years. I've learned a lot from literally everone who posts here. I don't see why I can't pass on some of the information I have learned, even if I haven't had direct experience with a particular treatment myself. Others do the very same thing. I'm trying to be helpful. You are just being flat out rude.

Jonny: if you are also on 6mp that's good. It will not only help protect against antibodies forming but could possibly keep you in remission all by itself if you decide to stop the infliximab at some point. You may not need any other drugs at all.
Posted 6/4/2015 8:01 PM (GMT 0)
Hey happychick,

Thanks for your post. I was in the same spot as you, admitted and given IV steroids, my CRP was down at 8 but as soon as I converted to the oral steroids, it shot back up again and it was at that stage that the decision was made to add in infliximab. Since then my symptoms have all but disappeared. Glad to hear that you are doing better too.

Have to agree with you point on negativity - its not helpful, from what I have seen on this site there are plenty of people here who consider themselves experts based on... not a great deal. I also think its important to keep in mind that there are many more people who read this forum than post on here and they are looking for advice and support also. I think overly negative comments can be very irresponsible and have a real effect on some people and their decision making. The fact is there are many, many people out there in the community living their lives with IBD and they are too busy enjoying themselves to be posting on here all the time - its not all doom and gloom!

Post Edited (Jonny_Murray) : 6/4/2015 2:05:01 PM (GMT-6)

Posted 6/4/2015 8:11 PM (GMT 0)

garylouisville said...
Happychick: I don't see where I was pessimistic. I was realistic. I have studied this disease quite a bit for almost five years now not only on my own but by reading everyone's posts on here for those five years. I've learned a lot from literally everone who posts here. I don't see why I can't pass on some of the information I have learned, even if I haven't had direct experience with a particular treatment myself. Others do the very same thing. I'm trying to be helpful. You are just being flat out rude.

Jonny: if you are also on 6mp that's good. It will not only help protect against antibodies forming but could possibly keep you in remission all by itself if you decide to stop the infliximab at some point. You may not need any other drugs at all.

I see where you are coming from Gary but I suppose I am making the point that this site probably provides a distorted view. I know from having posted on here myself and having read on here fairly extensively that people who are unwell and having problems tend to be attracted to this website. Its only natural - that's what its here for I guess. In that sense, this site provides a snapshot of peoples experiences with IBD but that will not necessarily reflect that average experience overall. The infliximab thing is a good example - the people who have had success with biologics are not no here posting about antibodies - they are out and about enjoying their lives.
Posted 6/4/2015 8:51 PM (GMT 0)

garylouisville said...
Happychick: I don't see where I was pessimistic. I was realistic. I have studied this disease quite a bit for almost five years now not only on my own but by reading everyone's posts on here for those five years. I've learned a lot from literally everone who posts here. I don't see why I can't pass on some of the information I have learned, even if I haven't had direct experience with a particular treatment myself. Others do the very same thing. I'm trying to be helpful. You are just being flat out rude.

Jonny: if you are also on 6mp that's good. It will not only help protect against antibodies forming but could possibly keep you in remission all by itself if you decide to stop the infliximab at some point. You may not need any other drugs at all.

Gary I am not trying to be rude but I have biten my lip here a number of times when you have tried to give your advice and i have to say 90 per cent of the time your 'realism' is extremely negative and not what we want to here. I'm afraid it's very rarely helpful but more a fuel for extra worry. I know deep down you are trying to help. But just be careful in the way you advise especially as you have not been in our position. First hand experience is the only experience that counts not hearsay. I have had the disease for the past 15 years and have ready myself silly on its developments but do not purport to be an expert on it or give my advice out so freely.

Also please see comments from Jonny re: your negativity and have a long hard look at how you give out advice. Sometimes it's not what you say- it's how you say it.
Posted 6/4/2015 9:16 PM (GMT 0)
Have to agree with Happychick! I have felt the same way...I don't come to a support board to have continuous debates that even the "expert, certified and qualified researchers in IBD and IBS" don't have all the answers for...especially when all the qualified scientists and researchers can't even agree with each other because none of them know for sure, they speculate on many things when it comes to both IBD and IBS....so I sure don't want to have debates about it on a support forum, especially when none of us "commoners" can prove our points either. We believe what our gut tells us and what makes sense to us and it's okay to disagree but with respect, that's what counts!
Posted 6/4/2015 9:20 PM (GMT 0)
I'm guessing that psyllium seed powder never arrived.
Posted 6/4/2015 10:04 PM (GMT 0)
Here we go again. Gary was talking truth and facts. Just because he wasn't holding OPs hand and singing about sunshine and rainbows doesn't make him negative or cynical. Gary tells it like it is and doesn't pull any punches. More people should be like this.
Posted 6/4/2015 10:13 PM (GMT 0)

ki-wi said...
Here we go again. Gary was talking truth and facts. Just because he wasn't holding OPs hand and singing about sunshine and rainbows doesn't make him negative or cynical. Gary tells it like it is and doesn't pull any punches. More people should be like this.

Thread closing in 3... 2... 1.......

But broadly speaking I agree with Gary in this instance. Remicade did jack for me, but if it had worked my GI would have kept me on it indefinitely (I met one 80-year-old lady with Crohn's colitis who'd been on it for 7 years). In Crohn's disease our med choices are even more limited than for UC, so there is absolutely no way I'd piss about trying different meds if I was already on one that was working.

Particularly as I've already had surgery and know from firsthand experience I would much rather have not needed to have it in the first place. I wish the biologics had worked for me.

Post Edited (NiceCupOfTea) : 6/4/2015 4:17:53 PM (GMT-6)

Posted 6/4/2015 10:50 PM (GMT 0)

NiceCupOfTea said...

ki-wi said...
Here we go again. Gary was talking truth and facts. Just because he wasn't holding OPs hand and singing about sunshine and rainbows doesn't make him negative or cynical. Gary tells it like it is and doesn't pull any punches. More people should be like this.

Thread closing in 3... 2... 1.......

But broadly speaking I agree with Gary in this instance. Remicade did jack for me, but if it had worked my GI would have kept me on it indefinitely (I met one 80-year-old lady with Crohn's colitis who'd been on it for 7 years). In Crohn's disease our med choices are even more limited than for UC, so there is absolutely no way I'd piss about trying different meds if I was already on one that was working.

Particularly as I've already had surgery and know from firsthand experience I would much rather have not needed to have it in the first place. I wish the biologics had worked for me.

That's fair enough NiceCupofTea, I'm sorry that medication did not work for you. I was simply making the point that this site does not provide a good overall perspective on the general experience people have with IBD because it tends to attract people who are going through a difficult time. In other words you get a distorted view that is weighted towards the more (and sometimes far more) negative experiences. Therefore I tend to take the views of long term posters with a pinch of salt, especially in comparison with my consultant and GI nurse who have practical experience of treating patients with these medications over more than a decade.
Posted 6/4/2015 10:51 PM (GMT 0)
Hi Jonny, I had immediate results with remicade. First my cramps went away (which is my hallmark sign of poor control and first sign of impending flare) and then I progressively got better to the point that I could eat anything without worrying about having access to a restroom. I have been on remicade since 2009 and I have no plans of discontinuing it nor does my GI doc. I am not a candidate for discontinuation.

When you are reevaluated in a year, keep in mind that the best patient to stop remicade must meet specific criteria. I'm glad to hear you are already responding. Remicade changed my life and I hope you continue to see positive results.
Posted 6/4/2015 10:56 PM (GMT 0)
Lot's of people "tell it like it is" but it's how you say it that counts, and if you're at some degree putting someone down or making fun of what they believe or belittle them in a condescending way then that's different all together. Having compassion most especially on a support forum where people are already not feeling well and/or frusrated is KEY and it's not helpful if you're being condescending with your responses to people or trying to egg them on into a debate they have no interest in participating in when they simply want to share their experiences and what their GI's are telling them.
Posted 6/4/2015 10:57 PM (GMT 0)
Let's play nicely now as bickering does nobody any good. None of us are doctors, we offer up opinions, our past experience/treatment, and things we've read or heard. Most certainly double-check stuff with the pros.
Posted 6/4/2015 10:59 PM (GMT 0)

platinumpixie said...
Hi Jonny, I had immediate results with remicade. First my cramps went away (which is my hallmark sign of poor control and first sign of impending flare) and then I progressively got better to the point that I could eat anything without worrying about having access to a restroom. I have been on remicade since 2009 and I have no plans of discontinuing it nor does my GI doc. I am not a candidate for discontinuation.

When you are reevaluated in a year, keep in mind that the best patient to stop remicade must meet specific criteria. I'm glad to hear you are already responding. Remicade changed my life and I hope you continue to see positive results.

Hey pixie - thanks for your reply. Good to hear than Remicade has had such a positive effect for you. For me its definitely helped already. Obviously I have no plans to stop this medication, I've only been on it for about 3 days! The first stage is to get off pred and I'm not looking to much further forward than that at the moment!
Posted 6/4/2015 11:36 PM (GMT 0)

Jonny_Murray said...
That's fair enough NiceCupofTea, I'm sorry that medication did not work for you. I was simply making the point that this site does not provide a good overall perspective on the general experience people have with IBD because it tends to attract people who are going through a difficult time. In other words you get a distorted view that is weighted towards the more (and sometimes far more) negative experiences. Therefore I tend to take the views of long term posters with a pinch of salt, especially in comparison with my consultant and GI nurse who have practical experience of treating patients with these medications over more than a decade.

I absolutely agree with you.

I can even use myself as an example. I was diagnosed with Crohn's in 2000. I wasn't fobbed off with IBS for years, therefore I was diagnosed while my disease was still early onset. For the first 4-5 years I had very mild symptoms and even doubted my Crohn's diagnosis (stupid; I should have discussed my doubts with the GI but I never did). Long story short, the thought of joining a Crohn's forum in that period wouldn't even have occurred to me. Even when my disease took a turn for the worse, it took another few years before I became motivated enough to join a forum.

I've also got a brother with IBD. He's had it for slightly longer than me, but unlike me, his disease never became severe. He's in remission pretty much nearly all the time. Takes the occasional course of steroids. (Apparently the last course didn't work, but the flare-up still ended anyway.) He definitely does not post on any IBD forums.

It's like with Remicade. My GI said he only knew 3 people for whom Remicade didn't work: I made it 4 people >_>. I found that a bit weird, tbh. From HW, I'd project a 50% success rate for Remicade. That said, it isn't much comfort when it all goes pear-shaped for you.
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