In remission...still need remicade???

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apples
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 10/31/2007 7:16 PM (GMT -7)   
eyes  So I have been in remission for about 3 years while on remicade.  my gi wants me to continue with the remicade because stopping may lead to a flare. 
 
my question is.... will i have to stay on remicade for the rest of my life?  i am 30 years old and lead a normal life.  the only day i feel like i have cd is the day i have to sit at the infusion center for my treatment.
 
has anyone stopped their meds after being in remission for a long time? advice?  my gi says it is a gamble to stop something that has worked wonders for me.  but i do worry about the long term side effects of the drug....
Applesl
 
30 year old female ~ Mom of 6 month old Jack
Diagonosed with Crohns in Dec. 2003
Previous meds - Asacol, Pentasa, Prednisone, 6MP
Current meds - Remicade ONLY(every 10 weeks)
  • I have been on Remicade for almost 4 years!!!
  • Received Remicade throughout pregnancy
  • Currently breastfeeding!
 
 
 


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 10/31/2007 7:28 PM (GMT -7)   
My GI's have told me that I would need to stay on it to maintain remission as well. I guess until something better comes along.
 
Instead, I only lasted 2.5 years before building antibodies to it and going into a huge flare. I was completely symptom free before that so I guess the Remicade really was keeping me from a flare. I found myself admitted to the hospital unexpectedly. I'm now on Humira.
 
Same thing with Humira. GI says I just stay on it if it's working and keeps me symptom free. After going through what I did when teh Remicade stopped, I'm okay with staying on Humira indefinitely.
 
It's depressing but a lot of people take maintenance medication their whole lives. I do for allergies and asthma so it's nothing new for me. Just add it to the list!

apples
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 10/31/2007 7:37 PM (GMT -7)   
When the remicade stopped working for you after 2.5 years, did you have any warning?  that worries me because i am hitting the 4 year remicade mark and never heard about this antibody thing....

Applesl
 
30 year old female ~ Mom of 6 month old Jack
Diagonosed with Crohns in Dec. 2003
Previous meds - Asacol, Pentasa, Prednisone, 6MP
Current meds - Remicade ONLY(every 10 weeks)
  • I have been on Remicade for almost 4 years!!!
  • Received Remicade throughout pregnancy
  • Currently breastfeeding!
 
 
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/31/2007 8:42 PM (GMT -7)   
I went almost 3 years on Remicade before having difficulties. GI determined I had developed antibodies also. My warning signs were an increase in previous symptoms, and more importantly, becoming very ill AFTER my infusions when I had not had that problem in the almost 3 years prior.

When I started Remicade, my GI explained that if Remicade reduced or eliminated my symptoms and improved my quality of life, then I would stay on it until either of those two factors changed.

Hopefully Remicade continues to work for you fo a very long time and that a cure is discovered allowing us all to lead normal lives.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 10/31/2007 11:57 PM (GMT -7)   
I've read a lot on these forums the last few weeks cos I've been off work due to a bad flare, and not only did I read here but also other med sites and it mentioned if you stop Remicade infusions and then go back on it say year or two later, your body won't agree with it as it's used to that drug from the past and then people end up going on humira b/c thats the next best thing after remicade.
 
Btw, I see your new to the forums, welcome to HW and remember if you got questions always ask! :)
Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 35mg, Pentasa 1000mg 3xday, Atenolol 25mg for fast heartbeat and Restoril 30mg for the sleepless nights (thanks Pred!)


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/1/2007 2:54 AM (GMT -7)   
Hi Apples, I have been on Remicade for over 2 yrs. and I will be on Remicade for the of my life.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/1/2007 6:24 AM (GMT -7)   
This is just my humble opinion, but why fix what isn't broken. If the Remi is keeping you in remission, why stop it?
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Crohnsy
Regular Member


Date Joined Mar 2006
Total Posts : 22
   Posted 11/1/2007 9:52 AM (GMT -7)   

Just wanted to throw my two cents in.  I had 10 Remicade treatments over about a year and it worked almost immediately for me.  No more pain!  It also allowed me to completely come off of Prednisone and just take Pentasa.  I did develop a scary allergic reaction that required Benedryl during the IV treatments, but that wasn't enough for me to consider stopping. Even though I felt "cured" my doctor and I agreed that I would stay on it indefinitely.

However, I've been trying to get pregnant for over a year now and to my surprise, after letting my GI know that I was pregnant in Sept. '06, he told me to stop the Remicade.  I was surprised because he's very conservative and doesn't want to change what is working. 

Unfortunately I miscarried at six weeks and was able to keep my Remicade schedule going.  I became pregnant again this July and he again told me to stop - I again miscarried, this time after nine weeks so I would have to go through the induction phase again and since I was now pursuing fertility treatments (I'm 37) he told me to stop Remicade until further notice.

It's funny, because from everything I've read (including on this forum) and heard from my Rheumatologist who treats pregnant Crohn's patients occasionally, I was fully prepared to continue my Remicade.  Maybe his decision had to do with the miscarriages or maybe it had to do with the fact that I'd been in symptomatic remission for so long (although an endoscopy still showed inflammation, but it hadn't spread).

I've now been without Remicade since May 2007 and fortunately, the pain (my main symptom) hasn't returned.  I have been plagued with recurring urinary tract infections (a lingering side effect of Remicade?) and this mystery skin rash that I'm trying to get dx'd, but otherwise feeling good. 

So, I'm not advocating getting off of Remicade - if I weren't actively trying to get pregnant (and that window's closing here in a few years) I would still be on it.  And I hope to get back on it eventually, I just wanted to let you know that if you're even symptomatically under control for a long time - which it sounds like you are - things don't necessarily fall apart when you stop Remicade.

 

 

 

 


Dx w/Crohn's November 2005 - still active as of November 2007 Hospitalized once, no surgeries
Colonoscopy, 2 ultrasounds, MRI, upper GI x-ray, abdominal x-ray, 2 camera endoscopies
First, Flagyl/Cipro, Prednisone, and Pentasa
10 Remicade treatments
Currently just Pentasa (4000 mg) b/c trying to get pregnant
Symptom-free (mostly) since March 2006
 


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 11/1/2007 10:41 AM (GMT -7)   
Being pregnant and being on remicade is a no no from what I read, it can cause problems.
I'm sorry to hear what happened, I wish you the best and hope all stays well with you being off Remicade in the meantime.
Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 35mg, Pentasa 1000mg 3xday, Atenolol 25mg for fast heartbeat and Restoril 30mg for the sleepless nights (thanks Pred!)


apples
New Member


Date Joined Oct 2007
Total Posts : 9
   Posted 11/1/2007 1:13 PM (GMT -7)   

I guess my fear is the unknown of side effects down the road... after 5, 10, 15 years of remicade, will i be dealing with complications from this drug?

(and i did have a successful pregnancy with remicade!)


Applesl
 
30 year old female ~ Mom of 6 month old Jack
Diagonosed with Crohns in Dec. 2003
Previous meds - Asacol, Pentasa, Prednisone, 6MP
Current meds - Remicade ONLY(every 10 weeks)
  • I have been on Remicade for almost 4 years!!!
  • Received Remicade throughout pregnancy
  • Currently breastfeeding!
 
 
 


Crohnsy
Regular Member


Date Joined Mar 2006
Total Posts : 22
   Posted 11/1/2007 2:39 PM (GMT -7)   

There certainly is a higher risk of lymphoma as a result of Remicade among other things, including blood infections.  It's a powerful drug, but the idea is that the risk of some of those potentially dangerous side effects is outweighed by the damage that active Crohn's could do in the long run.

I totally understand not being comfortable with the idea of staying on ANY powerful drug long term, let alone for the rest of my life - especially in my 30s.  It's a dilemma.  I guess the hope is that safer drugs will be developed - or even a cure - before then...

And I was encouraged reading about your safe and smooth pregnancy - and healthy baby - while on Remicade...it's peace of mind for a lot of women, I think.

 


Dx w/Crohn's November 2005 - still active as of November 2007 Hospitalized once, no surgeries
Colonoscopy, 2 ultrasounds, MRI, upper GI x-ray, abdominal x-ray, 2 camera endoscopies
First, Flagyl/Cipro, Prednisone, and Pentasa
10 Remicade treatments
Currently just Pentasa (4000 mg) b/c trying to get pregnant
Symptom-free (mostly) since March 2006
 


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 11/1/2007 2:49 PM (GMT -7)   
I am not a Remicade patient, but I do know that in the 25 years since I was diagnosed with Crohn's, there have been at least a half-dozen new therapies to go through successful clinical trials and reach the market -- including Remicade and Humira. I would expect that 15 years from now, GIs will laugh about how they once treated severe intractable Crohn's with Remicade as they give us whatever new silver bullet has been developed in the meantime. I bet it's unlikely that any Crohn's patient in her 30s will still be using Remicade at 40. More likely something we have not yeta heard of.

KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 11/1/2007 5:34 PM (GMT -7)   
You probably should listen to your doc on this one. The way I see it if we are in remission, the medicine put us there so if we stop then there's an increased chance of a flare. We need it to keep the inflammation down so we can stay that way. I guess now for you its just being used as maintenance.
DX: Crohns in March 2007
Meds: Remicade


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 11/1/2007 5:58 PM (GMT -7)   
apples said...
When the remicade stopped working for you after 2.5 years, did you have any warning?  that worries me because i am hitting the 4 year remicade mark and never heard about this antibody thing....

I did have warnings, but I ignored them. I was getting more and more symptoms but was too busy to make my GI do something more about it. We kept pushing the infusions closer together but I still never felt right again. Until I was so ill my PCP wouldn't let me leave his office but instead booked me a room at the hospital for a week.

I did not take Imuran which is often used to help prevent those antibodies from being formed. That might have attributed to things.

Also - all my GIs have said Remicade and pregnancy are things they are comfortable with. There have been many women stay on it and do fine. Now, I'm on Humira and next to nothing is known about that...


HUB
New Member


Date Joined Nov 2007
Total Posts : 1
   Posted 11/2/2007 3:32 AM (GMT -7)   
:-)  I have had crohn's for about 30 years now. Im 47 and I had 3/4 colon removed about 10 years ago. I was on remicade as soon as it was available, and it did get me off the Pred. However I dont think being on it was a good thing for me long term, I have been off remicade for 13 months now. I have tried to cut all stress from my life, I go to the gym 2 to 3 times a week, eat colon friendly food, I take pain meds when I need it and smoke when needed. It is better than anything the drug companys can give you, but they do not want you to beleave this because they make no money from it.   
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