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Crohn's Disease Forum » Treatment » What is the longest anyone has been on biologics?


11-29-2017, 09:30 AM   #1
CallieS
 
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What is the longest anyone has been on biologics?

I've been reading this forum frequently and I've noticed a pattern both with people's posts and their medication history in their signatures. It seems that even though biologics are meant for long term use, many people have to stop them. Either they have a bad reaction or the medicine stops working.

My question is, what is the longest anyone has been on these drugs?

I'm going to start Humira or Cimzia soon, whichever my insurance approves, but in the back of my mind, I'm already wondering about plan B because I have yet to read about anyone on these medications for more than about five years.
11-29-2017, 10:00 AM   #2
Maya142
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My daughters have been on different biologics for 8-9 years. My older daughter lasted 5 years on Humira + MTX.

They have never had side effects with biologics. They have lost response though, which is why we've had to switch.
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11-29-2017, 10:03 AM   #3
Lisa
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I believe there is another thread on here about this - but I've been on Remicade since fall of 2005.....so 12 years now.....
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30 plus years and counting with UC/Crohn's!
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-29-2017, 10:27 AM   #4
my little penguin
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Almost 6 yearson Humira
Had to switch due to surgery (non Crohns )
So it didnít work
When it was restarted months later
Good luck
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11-29-2017, 03:43 PM   #5
CallieS
 
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I believe there is another thread on here about this - but I've been on Remicade since fall of 2005.....so 12 years now.....
Do you have the link to the thread? Congratulations on 12 years!

Thanks for everyone's replies. I also wonder if people don't bother posting their success stories. People are probably on this website in the first place because they are having problems and trying to find answers, so of course it makes sense that a higher percentage had issues and had to stop the biologics.
11-29-2017, 04:15 PM   #6
Lisa
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http://www.crohnsforum.com/showthread.php?t=16403

It is an old thread, but has some good information from members in it!
11-29-2017, 04:41 PM   #7
OleJ
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First of all: Yes, you definately get the bad stories here, because people in remission don't seek out a forum to use for venting, support, advice, wisdom. So here's on to another story which is not 100% positive. Sorry..

I hope it is still relevant as knowledge...

I was on biologics from 2000-2016 (except a pause of less than a year), so 15 years+...

I was diagnosed in '99 and in 2000 I was offered Remicade as part of a study. I had a good effect from it, and continued until my doc proposed I tried Humira in 2005. Humira kept me pretty much in remission until suddently in 2011/2012 my kidney function started going down due to inflammation in the kidney tissue (Interstitial Nephritis with granulomas).
My GI suggested I could try to stop the biologics because of the chance it was a drug induced reaction, so I did.

After less than a year in an almost permanent flare and on steroids, I had to start again, going back to Remicade. I was on that until 2016 when I started getting really sick and further loosing kidney function. I am down to about 40% now.
That was when I quit for good, hoping I can avoid dialysis or a kidney transplant. So far it has been stable, but I am trying to prepare mentally for the worst.

The docs have different theories on what happened/happens to me: could be a manifestation of CD, could be the biologics.. I researched this quite alot, and I lean towards the explanation being the biologics suppress my immune system so much that infections are allowed to attack the kidney tissue.

It is generally reported that doctors treating with biologics should be aware of the risk their patients develop something with "-itis".

It is difficult for me to say "don't do biologics" because I owe it to biologics that I could finish my education and start a family. But had I known then what I know I would have said no thanks and started right away on what keeps the CD pretty much under control now: Methotrexate, diet, supplements, trying to reduce stress, proper sleep, and exercise.
11-29-2017, 10:15 PM   #8
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Remicade 1999-2011 when it stopped working after my pregnancy
2012-tried cimzia never worked
2013-surgery and then humira.
Still on humira.

Never had anything bad except got the shingles when I started cimzia ( also very ill, anemic, etc.)

Remicade was great!!! Biologics save intestines.
11-30-2017, 12:51 AM   #9
OleJ
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Remicade was great!!! Biologics save intestines.
I agree. I would definately not have my colon today, had Remicade and Humira not been available.
Having said that I have found that looking at alternatives can be a good idea, if one has to stop due to the biologics no longer working, or side effect.
11-30-2017, 08:47 AM   #10
CallieS
 
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Lisa - thanks for the link! Very interesting.

It is generally reported that doctors treating with biologics should be aware of the risk their patients develop something with "-itis".

It is difficult for me to say "don't do biologics" because I owe it to biologics that I could finish my education and start a family. But had I known then what I know I would have said no thanks and started right away on what keeps the CD pretty much under control now: Methotrexate, diet, supplements, trying to reduce stress, proper sleep, and exercise.
Interesting remark regarding "-itis". Those types of conditions do keep popping up when reading people's stories, and it's something I will keep in the back of my mind. I plan to stay on top of any new symptoms I may develop.

Over the past 2.5 years, I've been on a variety of meds and I've reacted badly to about 50% of them. My plan B, which I'm already starting to put into place, is a change in my diet.
12-02-2017, 10:51 PM   #11
s.a.m.
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Remicade 2009-present 😀
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