Remicaide stopped working

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wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 2/10/2010 7:41 PM (GMT -7)   
So I went to the dr today and my bloodwork came back (since I my lower colon is so inflamed) - after 5 weeks there was no trace of Remicaide in my system (should last 8 weeks) and my body has been producing antibodies against it.  So no more Remicaide.  I am going to start taking Humira instead.  At least this explains a little why I am still not getting much better.
 
Has this happened to anyone else, where Remicaide has just stopped working?  I have been on it for about 2 years.  This is the second medicine that has stopped working for me - I used to be on 6mp.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/10/2010 8:28 PM (GMT -7)   
Too bad about the Cade. How can they tell there is no Remicade in your system? I didn't realize there was a test like that...
33 y/o male. Dx'ed in 1999. No surgeries.

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

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/10/2010 9:19 PM (GMT -7)   
Remicade stopped working for me at about the 2 year point. I continued, and got another infusion after knowing it was not working because the GI and rheumy felt that it wasn't likely the cause of my increase in symptoms. After that last infusion, I was worse that before the infusion. It was later determined that I had drug induced lupus and that last infusion made it worse.

I hope you do better with Humira than I did. I took it for about 2.5 months. My last shot threw me into a full blown reaction. Hospital visits, two stretches on prednisone. etc., etc. Was off all biologics for 18 months. Am now taking Simponi and it is working okay on my AS problems. My gut symptoms were put into remission while on Remicade and I attribute them to staying that way due to taking Imuran. It is important to note that my CD gut inflammation has always been classified as mild. The biologics have been prescribed to treat my AS.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 2/10/2010 9:48 PM (GMT -7)   
Great.  They had me do the last infusion today anyway.  How do you get drug-induced Lupus?  (aside from the obvious) - how do you know?
 
What does a "full-blown reaction" on Humira mean?  A flare induced by the drug?
 
Rider, they can test to see if there are antibodies in your system from the remicaide.  I had a ton of blood work done and this was the last that came in.
 
It's also worth noting that I had a CAT scan, multiple stool samples, and lots of blood work done, all which came back "normal".  Even the CAT scan.  Except for the fact that I knew i wasn't getting better and still had a lot of ::::TMI::: blood & mucous & pain, they took a look inside and saw all the inflammation.
 
I am trying to do a lot with a more holistic approach with diet and supplements and at this point feel like that is eventually going to be the way I would like my course of treatment to be, God willing.  I have been on 6mp, and that didn't work.  The Prednisone is going to wreck my body and is already taking it's toll emotionally.  The remicaide stopped working after 2 years.  Humira apparently has all kinds of awful repercussions. 
 
I need a big change.
 
 

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 2/11/2010 11:39 AM (GMT -7)   
Wednesday:

Humira is the same class of drug as Remicade, and in fact, has fewer allergic reactions than remicade, because it contains no mouse protein. So, there is a chance that Humira will work. Humira, just like Remicade has the possibility of causing drug induced lupus. The doctors will just watch your symptoms and do blood work as necessary. If you do develop drug induced lupus, in all likelyhood, it will go away a few months after you stop taking the drug (of course this is not a guarantee). So, Humira may put you in remission and be a good thing for you. So, don't give up on Humira - it is no worse than Remicade. It is the same category of drug as Remicade - anti-tnf agents.

If you have drug induced lupus - you usually have extreme fatigue and lots and lots of joint pain. You will really feel it, and it usually needs a course of steroids to combat. So, if you experience something like that, the docs will test you for lupus and drug induced lupus.

I would advice not stopping pharmaceutical medicine, because I believe maintenance therapy is essential to keep Crohn's in check. My husband takes a few supplements along with Remicade and Lialda and that seems to be helping his crohn's symptoms. Diet and supplements can help deal with some of the symptoms, like bloating and tiredness, but I do believe that maintenance therapy is a must for CD.

Hang in there honey, and hopefully you'll find remission soon.

((Hugs))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 2/11/2010 1:44 PM (GMT -7)   
Hey Wednesday,

I'm so sorry to hear the Remicade doesn't work for you anymore! I'm worried that will be the case for me one day. But I'm glad you at least know why you haven't been getting any better. I hope Humira works well for you. I did some research online when I was worried that the Remicade wasn't working for me at all anymore, and a lot of people had said that they did really well on Humira after having to switch to it when the Remicade stopped working. So I hope the same goes for you.

I'm also in the same mindset as you, wondering if the natural route may be the course I have to take, because I fear all the prescription drugs will be exhausted. I hope you find something that works for you. Feel better soon and keep us posted!

P.S. How did your date go that you were planning on a few weeks ago?

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/11/2010 3:59 PM (GMT -7)   
I apologize for not being more clear in my first response. While on Remicade, I developed antibodies that occur in people with lupus. I had a couple symptoms associated with lupus, but those symptoms also occur with other autoimmune diseases I have. When Remicade lost effectiveness, they switched me to Humira. I had to wait 2 months to make sure that all traces of Remicade had left my system before getting my first injections of Humira.

The cause of the reaction I had on Humira was a matter of debate between my GI and my rheumy. The GI felt I had serum sickness. My rheumy felt it was a sudden onset of a lupus crisis. The hospital I was seen at did not do the proper tests to accurately determine what happened. My reaction occurred about 18 hours after an injection. The problems: fever of 102.6, pain in all the large joints, extreme fatigue, vasculitis, and kidney issues.

I STRESS that my reaction on Humira was of a very rare nature. Neither of my doctors could find any reports of anyone having a reaction like mine. So please don't let my experience influence you.

As I said before, I am now on another anti-TNF biologic, Simponi, and have had no problems in the 9 months I have been taking it.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 2/11/2010 6:09 PM (GMT -7)   
Octobergirl, no date. :(  I cancelled it and have been avoiding it so much he thinks I'm not interested.  It's hard to explain what I am in the middle of now and still be cute and charming on a date.  Especially if I am afraid to eat and can't really drink and sometimes out of the vlue double over in pain or run to the bathroom.  All signs of a great catch. :)
 
I am also afraid I am turning into a temporary hermit to deal with this craziness.  Counterintuitive, I know, but comforting nonetheless.  Easier to spend every night at home knowing I am in control rather than go out and deal with anxiety.
 
 
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