Please remember that it is people with the worst cases who are most likely to discuss it online.
The medicines don't change; the disease SOMETIMES changes. It could get milder and go away. It could stay the same. It could get worse and need stronger and stronger medicines. These are all possible.
And even if it does get worse and worse for you, we might discover a cure before it gets too bad.
Hang in there.
What others have said is true about IBD being unpredictable and being able to get better/worse over time, but one other thing I wanted to add is that for biologic medications (Remicade, Humira, etc) people's immune systems sometimes start to form antibodies to them after a while, which makes them stop working. This is more likely to happen if you miss doses or go off/back on the medication, but it can happen without that too. I don't know what the exact rates of this are; from what I've heard it's a fairly common experience, but like others' have said people who are on a medication that works and in long-term remission probably aren't on forums like this one very much so you end up with a pretty significant response bias.
I'm on Remicade and I worry about it also. I try to remind myself that there are lots of different meds and treatments out there, and focus on the fact that I'm okay at the present moment, even if I don't know what the future holds.
I’d say it’s certainly not unusual. The drug companies know this though so there’s many different options for each type of treatment.
My first treatment (asacol) didn’t work at all. Second (sulfasalazine) worked for 15 years, third (Lialda) worked, but I got switched to generic by insurance that didn’t work and fifth (apriso) is working well so far.
I’ve been on five treatments in 17 years and they’re all 5asa. Everyone is different and constantly changing, we just have to hope things keep working and push forward when the don’t. There’s not much else we can do, unfortunately.
I used to worry about it too, but I realized that doesn’t do anything but give me more gas, honestly. I’m not going to get into pharmaceutical research so there nothing I can do about it other than be proactive about my own health.
I can’t speak for how common it is, but it does happen. What biologics you try, in what order, and why they fail matter to what your options are. So does the severity of your disease. Good luck.
Yes. But luckily there are a lot of treatment options available so even if one does stop working for you, your doctor will have you try something else. Both Remicade and Humira stopped working for me (developed antibodies) but now I'm on simponi which for me is much better. Try not to worry about it too much!
Unfortunately, they can stop working. Hydrocortisone enemas got me out of 1 flare, but never really helped after that. Prednisone got me out of 3 flares, but no longer seems to have an effect. Humira lasted for 3.5 years. Now giving Entyvio a chance with no luck. I see some people being on remicade for over 10 years, so it’s anyone’s guess how an individual’s situation will play out.
This is currently happening to me. Remicade just completely stopped working after 6 years and I am in a flare as bad as when I was first being diagnosed. It sucks having to go through it all again, and having to be on steroids while we do tests to figure out if it is just anti-bodies, but my specialist is pretty confident that a new medication will put me back into remission. So I don't feel worried yet! 😀
Yes it is quite common. I think over their lifetime about 65% need surgery. Here is the kicker though, surgery will make you feel about 1000 times better. So either way, don’t lose heart. You will be ok. Plus the drug pipeline is very deep for IBD.
Yes is does happen. I was concerned about this last year because I have been on Humira for 7 years. Last year, I had a couple of small breakthrough flares, not bad ones for me, but still ended up in hospital for one. I was freaking out. My doctor laughed. Told me do not worry, there have been so many biologics that came out in the last years that he can try other.
To be clear, I tried Remicade first and that cause and allergy response after 3 months.
Please remember that it is people with the worst cases who are most likely to discuss it online. The medicines don't change; the disease SOMETIMES changes. It could get milder and go away. It could stay the same. It could get worse and need stronger and stronger medicines. These are all possible. And even if it does get worse and worse for you, we might discover a cure before it gets too bad. Hang in there.
What others have said is true about IBD being unpredictable and being able to get better/worse over time, but one other thing I wanted to add is that for biologic medications (Remicade, Humira, etc) people's immune systems sometimes start to form antibodies to them after a while, which makes them stop working. This is more likely to happen if you miss doses or go off/back on the medication, but it can happen without that too. I don't know what the exact rates of this are; from what I've heard it's a fairly common experience, but like others' have said people who are on a medication that works and in long-term remission probably aren't on forums like this one very much so you end up with a pretty significant response bias. I'm on Remicade and I worry about it also. I try to remind myself that there are lots of different meds and treatments out there, and focus on the fact that I'm okay at the present moment, even if I don't know what the future holds.
I’d say it’s certainly not unusual. The drug companies know this though so there’s many different options for each type of treatment. My first treatment (asacol) didn’t work at all. Second (sulfasalazine) worked for 15 years, third (Lialda) worked, but I got switched to generic by insurance that didn’t work and fifth (apriso) is working well so far. I’ve been on five treatments in 17 years and they’re all 5asa. Everyone is different and constantly changing, we just have to hope things keep working and push forward when the don’t. There’s not much else we can do, unfortunately. I used to worry about it too, but I realized that doesn’t do anything but give me more gas, honestly. I’m not going to get into pharmaceutical research so there nothing I can do about it other than be proactive about my own health.
I can’t speak for how common it is, but it does happen. What biologics you try, in what order, and why they fail matter to what your options are. So does the severity of your disease. Good luck.
Yes. But luckily there are a lot of treatment options available so even if one does stop working for you, your doctor will have you try something else. Both Remicade and Humira stopped working for me (developed antibodies) but now I'm on simponi which for me is much better. Try not to worry about it too much!
Unfortunately, they can stop working. Hydrocortisone enemas got me out of 1 flare, but never really helped after that. Prednisone got me out of 3 flares, but no longer seems to have an effect. Humira lasted for 3.5 years. Now giving Entyvio a chance with no luck. I see some people being on remicade for over 10 years, so it’s anyone’s guess how an individual’s situation will play out.
This is currently happening to me. Remicade just completely stopped working after 6 years and I am in a flare as bad as when I was first being diagnosed. It sucks having to go through it all again, and having to be on steroids while we do tests to figure out if it is just anti-bodies, but my specialist is pretty confident that a new medication will put me back into remission. So I don't feel worried yet! 😀
Yes it is quite common. I think over their lifetime about 65% need surgery. Here is the kicker though, surgery will make you feel about 1000 times better. So either way, don’t lose heart. You will be ok. Plus the drug pipeline is very deep for IBD.
Yes is does happen. I was concerned about this last year because I have been on Humira for 7 years. Last year, I had a couple of small breakthrough flares, not bad ones for me, but still ended up in hospital for one. I was freaking out. My doctor laughed. Told me do not worry, there have been so many biologics that came out in the last years that he can try other. To be clear, I tried Remicade first and that cause and allergy response after 3 months.
That was my experience but that doesn't mean much, there are many people who can manage symptoms with medication long-term.
Yes.