Average Length of Biologics' Effectiveness?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 8/21/2010 10:45 PM (GMT -7)   
For those of you who have had a biologic diminish in effectiveness, how long did it keep you in remission? Also, is it pretty gradual or sudden?
Cimzia, Asacol

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/21/2010 11:45 PM (GMT -7)   
What is your def of remission? I have been on all of the biologics and had some success with all but more with Remicade. I had 5 good years before it stopped working and went to humira. Humira failed right off the bat and cimzia gave me about 6 months. I am now back on Remicade and have been back on it for about a year with much better results than the first 5 years that I was on it. My dose of 10 per is still the same as is my frequency of every 4 weeks but the antibodies are not as bad as before. I attribute it to my body being off it for a while and now premedicating with benedryl, cortisteroids, and zophran IV.
As for having remission, I have never had a period of normal bowel or arthritis since I got sick in 2003. I have however seen a decrease in symptoms after each infusion and I consider that a success.When the remicade started failing the first time it was very gradual. It stopped working the full 4 weeks and then would only last 2 weeks and finally it got so it was only a few days. I thought that it had stopped working all together until I finally went off of it and realized how much it truly was helping and suppressing.

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 8/22/2010 6:43 AM (GMT -7)   
Doctor's always told my daughter she couldn't restart Remicade. She had three doses to heal a hole in her bowel years ago. She was told she couldn't restart by the Cleveland Clinic as well as local doctors because the risk of an allergic reaction was too great. I was wondering why I read that others have been able to restart it successfully. Did they mention that it was a risk to you? Did they give you a lower dose to begin with?

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 8/22/2010 12:16 PM (GMT -7)   
My husband's been on it now for over 2 years. He's doing pretty good. We have a friend who has been on Remicade for the past 9 years. It really seems to be luck of the draw how long your body listens to Remicade. I just keep my fingers crossed and hope that my husband can stay on Remicade for a very very long time. :-)

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/22/2010 2:31 PM (GMT -7)   
I don't know the "average" but here's my experience... I never lasted the 8 weeks. In the beginning it *did* put me in remission, but I'd start bleeding again at about 6 weeks. We did infusions about every 6 weeks and I stayed in remission for 2 years. then it started sliding and my symptoms would reappear at 4 weeks. That's when we doubled the dose (10mg/kg) but it was no more effective. So I tried Humira which didn't work as well as the Remicade at 6 week intervals. But, my doc had me on Humira for 6 months... When I went back to Remicade I was fine on the first infusion, but the second I got hives in my mouth. After that infusion it was as if I'd had saline. It just didn't work at all. So I guess I'd say it was a slow drop in efficacy, but quick on re-induction. :-(

I'm on Cimzia now, but it's never put me in remission. In all honesty, I don't think it's doing much at all (ESR=82) but I'm scared to stop for the same reason tsitodawg mentioned.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

Post Edited (sr5599) : 8/22/2010 3:36:53 PM (GMT-6)


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/22/2010 3:53 PM (GMT -7)   
As far as the whole notion that you can't restart remicade, it was more of a theory that was first used when people started developing antibodies. We initially tried to prevent my stopping remicade and the antibodies by going on methotrexate with the remicade and then mercaptapurine. Those helped the remicade become more effective but I soon started having liver issues so I had to stop them all. Cimzia had it's qualities but the problem was that it did nothing for the arthritis. Their copay assistance is still hands down the best and I never had to pay for the medication. When it became evident that cimzia was just not working, my new G.I. had exhausted all other medicinal options and asked about how i would feel about trying remicade again. He had a theory that resting the body without the medication and letting the body's normal chemistry return may let me buy some more good time on remicade. To make sure that I would prevent any allergic reactions or antibody reactions we premedicated with the cortisteroids and benedryl in higher than normal doses. I did not reload my remicade doses and went straight to the 10 per dose every 4 weeks. I began to notice good results right away and each infusion has got better. He has since started other patients back on remicade that were in my same situation. I honestly had only one option left, tsabri, and I am holding off on that until the remicade does not work any longer. I am definitely not in remission and am sick even as I write this post but I sure have a lot more good days and hours than I had on any other biologic.
There is still so much to learn about biologics and their uses. When remicade came out, it was thought to be the miracle drug for IBD. Things have changed so much since my first infusion. For the first few years that I was infused, the nurses would have to suit up in full protective mask, gown, elbow length gloves, and booties when they would start the remicade and undo the I.V. They were in full chemo protective clothing and even had me in a separate room from the other infusion patients. Oh how times have changed and the nurses just wear gloves and are not worried about compromising their own immune systems. The long term effects are still yet to be seen but so are the theories about the med.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 8/22/2010 4:46 PM (GMT -7)   
I'm experiencing the same type of thing. I'm finding that i certainly can tell when it were's off, like now, my next is this tuesday, it's when you stop all together is when you realize that evam when it barley worked wasn't bad, it makes my flares last not as long, my dr's said just hope it gives you a least one good year. that is how biologic's work. I've had alot of surgery so the only time I've had remission was after surgery, it would last 10-12 years then reappear. that's how cd is when it is high up in small bowel. remission for me was only surgically induced, med's do not give me remission, they give me a little bit of my quality of life back, but that is all for me.

artist guy

potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 8/22/2010 8:48 PM (GMT -7)   
Remicade - developed an allergic reaction and it never worked well anyway.

Humira - great success and it lasted 3 years. Saw a little blood one day, far more the next, and then it was super bad the next day and after that.

Cimzia - good success - took longer to help - on it one year now - so far, so good. Keeping my fingers crossed that it will last.

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 8/22/2010 9:40 PM (GMT -7)   
tsitodawg said...
When remicade came out, it was thought to be the miracle drug for IBD. Things have changed so much since my first infusion. For the first few years that I was infused, the nurses would have to suit up in full protective mask, gown, elbow length gloves, and booties when they would start the remicade and undo the I.V. They were in full chemo protective clothing and even had me in a separate room from the other infusion patients. Oh how times have changed and the nurses just wear gloves and are not worried about compromising their own immune systems. The long term effects are still yet to be seen but so are the theories about the med.

Holy cow!! I had no idea. Yeah, these drugs are still quite new and it is worrying what the long-term effects may be.
Cimzia, Asacol

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/23/2010 6:34 AM (GMT -7)   

Remicade put me in remission but I stopped it after a year due to allergic reactions and loss of response.  Mastersmom, my GI says we may need to try it again, my rheumy doesn't think it's a good idea since I had bad reactions.  Most of what I find online says NOT to restart it, so I'm saving that as a last resort (which I am getting close to being at). 

Next, I did Cimzia on a clinical trial, so I was getting the full dose every 2 weeks instead of the 4 weeks that is now FDA approved.  I was on it for a year and it kept my Crohn's in remission but didn't completely get rid of the arthritis, so I switched to Humira when the clinical trial was up.  Humira didn't help much with the arthritis, so I switched back to Cimzia after about a year.  Now I've switched back to Humira again after about a year because I have less stomach pain on Humira than on Cimzia and neither are taking care of the arthritis.  Neither meds are working the whole 2 or 4 weeks for me and my docs say they can't get them approved more often.  

So, a year seems to be the average length for me. 


Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/24/2010 5:54 PM (GMT -7)   
I have a question. I was on Humira for a little over 2 years and had to go off of it and Immuran due to a severe case of Shingles. I have been off of it since mid May 2010. I am currently trying LDN and can't tell if it is beginning to work or not. I am considering going back to my GI and see what he says. So, if I have to go back on biologics will I be able to do Humira again or will I move to something else? I for one will never take Tysbari. I refuse to take the 1 in 1000 chance of the brain infection. I also took 1 infusion of Remicade when it first came out years ago. I also can't help but wonder what did people do before the biologics.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8578
   Posted 8/24/2010 7:38 PM (GMT -7)   
Wish I could tell you.

But biologics has been closed off to me as an avenue for treatment, since prohibitively expensive treatments + the NHS aren't really a match made in heaven. Although I see other UK people on here are on Remicade or Humira, so whatever. I just obviously have that air about me that ensures I constantly get fobbed off.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 8/24/2010 7:45 PM (GMT -7)   
I'm pretty certain you can stop and start Humira without increased risk of allergic reaction. However, it may or may not be effective.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 8/25/2010 10:26 AM (GMT -7)   
When my daughter stopped Humira for resection surgery (the theory being that Humira healed inflammation thus causing a stricture) and then tried to restart, she had a severe allergic reaction--hives in throat and on parts of the body which left scars for months. We were told this was a possibility. But later, doctors told us that the Humira may not have been restarted properly. They loaded her up again with high doses instead of just starting again with the regular dose. At the time, the Humira representative was suppose to be helping with information about the proper way of restarting but he was then unavailable (it was around the holidays) so the doctors may have bungled the restart.

A doctor at the Cleveland Clinic saw her body soon after the Humira reaction and said, "Wow, we don't want you to ever take that again." and then told her the following week, over the phone, after a scope that he wanted her to go back on Humira. I get so tired of feeling like I am babysitting doctors. I know they see million of patients but couldn't they just take a minute to review your case before they call? But I digress. . . .

Linn
Regular Member


Date Joined Jul 2008
Total Posts : 118
   Posted 8/25/2010 5:47 PM (GMT -7)   
Hey Mastersmom--

If they restart your kid on Humira, it probably won't be without pre-medication. I was diagnosed ten years ago, and back in the day, Remicade was the only option for severe people. So imagine my parents delight when I had an allergic reaction on the third infusion. Well, I still took it for seven years after that. I only stopped Remicade in 2007 because it stopped working for me. All those years they just gave me a big hydrocortisone shot along with the infusion and literally assigned a nurse to sit there and LOOK at me while the thing was being done. I took Humira for a year--and then I had to upgrade to Tysabri. Tysabri gets a bad rap but it has, without exaggeration, completely changed my life. My only problem now is that my colon healed so well, I got myself a ridiculous pin-hole stricture--balancing eating for an obstructed colon and medical school = not easy, but luckily I have a very understanding boyfriend and some fantastic friends.

Take home message from all this: they'll find a way to make it work.

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 8/26/2010 11:38 AM (GMT -7)   
Wow Linn. Your doctor seems to know more than any we have talked to. Her Humira restart was in 2008 and we have not found a doctor since that has even given us a hint that there was any possibility she could try it again after her allergic reaction.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 4:26 PM (GMT -7)
There are a total of 2,735,543 posts in 301,315 threads.
View Active Threads


Who's Online
This forum has 151417 registered members. Please welcome our newest member, porkdot.
327 Guest(s), 6 Registered Member(s) are currently online.  Details
Loutucky, NiceCupOfTea, U B Tough, LymieWriter8, Mustard Seed, multifacetedme


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer