Humira- Remission?

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ckmom
Regular Member


Date Joined Jan 2007
Total Posts : 67
   Posted 8/3/2008 6:38 PM (GMT -7)   
Just wondering if anyone who is on Humira, feels that they are now in remission?  I've been on it for 1 1/2 years already (1 shot every 2 weeks), and am wondering if I should talk to my gi about going down to 1 shot a month?  Anyone done that?  Maybe I shouldn't mess with a good thing, but I'm worried about putting all this toxin in my body!  Don't get me wrong, It's been a wonder drug for me- just wondering if I can do with "less".

potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 8/4/2008 8:31 AM (GMT -7)   
I have wondered about that also since I am also in remission for two years now. When I first started Humira my doctor mentioned the possibility of reducing the medication if I did go into remission. He has not brought it up again however.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/4/2008 9:01 AM (GMT -7)   
This is just my opinion, but I think if it ain't broke don't fix it. I am not on Humira, but I take Asacol and after my last resection a GI told me that I no longer needed to take the Asacol. So I quit taking it and ended up getting sick again. Went back on it and everything is good again. JMHO
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.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/4/2008 9:44 AM (GMT -7)   

I would not cut down the dose... I agree with Nanners. Don't try messing with the dose cause then you could possibly flare and have a hard time getting remission again....

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 8/4/2008 5:57 PM (GMT -7)   

Sounds like it is working great!!! Why reduce it.  My doctor is considering the humira for me...did you notice a difference right away?  Also have you caught alot of colds, gotten sicker, etc. since you started??

Thanks!!

christine


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/4/2008 6:14 PM (GMT -7)   
I have been on Humira since Feb this year.  After I got better I asked my Dr if I could try going 2.5 weeks before I had to give myself a shot, and if it worked to try going a little longer since the side effects can be so awful.  He said absolutely not.  According to my Dr. one can build anibodies against the Humira if you go longer.  He said that Remicade is made to go longer and that alot of people built antibodies to it due to the length of time between infusions.  Don't know how correct that is but he has been pretty good for the last 15 years.

34 year old Female
Diagnosed with CD 1993
Currently taking Asacol, 100mg Immuran, 5 mg prednisone (tapering), Humira injections twice monthly since Feb 08, Fish Oil, Probiotics, Multi Vitamin, B-12 tablet, folic acid


Linn
Regular Member


Date Joined Jul 2008
Total Posts : 118
   Posted 8/4/2008 6:53 PM (GMT -7)   
Staci is right. your body will create more antibodies TO the antibody (humira) if it "sees" the particle less often...and this can increase your chances of becoming resistant.

this is bad, because if you "graduate" from humira, the chances you will respond to cimzia are dimished significantly, according to my GI. This leaves you where i am: Tysabri. I think it's working for me...but I guess my point is, why risk a flare, having to start pred, find a new drug that might not even work, taper the pred...you see where i'm going.

i hope you continue to do well on the humira. i just want us all to be able to switch over to prochymal!
24-year old Crohny, dx'd at 16.
Deferred medical school till January 09 because of most recent flare

Currently take:
Tysabri
Pred 60 mg
Nifrex


ckmom
Regular Member


Date Joined Jan 2007
Total Posts : 67
   Posted 8/4/2008 7:32 PM (GMT -7)   
Thanks everyone for you opinions and advice. I would definetely not drop my dose without talking to my gi. He happens to be one of the head guys that ran all the trials with Humira, so I'll check wait until my next appt. to see what he says. I had thought he told me when I started, that building anitibodies to Humira was much less likely than it is with Remicade (because of the mouse). But I will let you all know when I talk to him about it.

Nikki0294 a.k.a Christine,
I noticed a difference within the 1st 2 months. I was on 6MP which was just awful for me. I never got better taking that drug, and believe it actually made me worse, and always dead tired. I am a germ-a-phobe, but have 2 teenagers, and have not gotten sick once (knock on wood) while on Humira. I do have an RV fistula, that has gotten much better, but sad to say has never healed up with the Humira. Dr. thinks if I hadn't had a previous surgery on it, that it probably would have healed up. Oh well, after 13 years with this stupid disease, you learn to take every little bit of good, and try and ignore the bad! Talk to your gi about Humira, for some it really works wonders!

Linn,
What is prochymal?

Linn
Regular Member


Date Joined Jul 2008
Total Posts : 118
   Posted 8/5/2008 12:57 AM (GMT -7)   
hey ckmom

if you run a google search on prochymal, you'll hit the companies web-site. basically, it turns the whole idea of treating crohn's on its head, by getting to the root of the issue--which is inflammation as a result of a whack immune system.

prochymal uses adult stem cells and infuses them right into your body...these cells, without a pre-defined task, go to the site of the inflammation and quiet things by releasing anti-inflammatory signals, and repairing the cells in your crohn's-afflicted zones. right now its in phase III clinical trials and the results sound amazing...if you surf through the threads here, there are trial participants who have been feeling really great.
24-year old Crohny, dx'd at 16.
Deferred medical school till January 09 because of most recent flare

Currently take:
Tysabri
Pred 60 mg
Nifrex


downunda
New Member


Date Joined May 2008
Total Posts : 19
   Posted 8/5/2008 2:07 AM (GMT -7)   
are you interested in studying to be a gastro Linn?
Is anyone else on the board done med school with crohns? 
26F, Crohn's for 8 years, currently on 6MP and pentasa. Have previously tried remicade, iron, pred and entocort.


Linn
Regular Member


Date Joined Jul 2008
Total Posts : 118
   Posted 8/5/2008 6:28 AM (GMT -7)   
hey downunda...

i'm hoping to do ped's. maybe i'll do a fellowship in gi, but i'm crossing that bridge when i get to it. my boyfriend wants me to anesthesia so he can stay home and be a manny ;-) ....
24-year old Crohny, dx'd at 16.
Deferred medical school till January 09 because of most recent flare

Currently take:
Tysabri
Pred 60 mg
Nifrex


Eddie K.
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 8/5/2008 7:06 AM (GMT -7)   
I agree it doesn't make sense to drop the Humira dose if it's working but if I remember correctly there was a clinical study that showed equivalent efficacy at lower doses...(for those who can't handle the side effects I presume...)

momb
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/23/2009 6:04 PM (GMT -7)   
I've been wondering about the remission myself. My son's has been on Humira for about 1 1/2 years. This summer his doctor said they were considering taking him off Humira since the drug has only been approved by the FDA for one year. He has responded extremely well. Is going to school and living the life of a healthy college student. Once they take him off, there are no guarantees on how he will respond. Now I find myself thinking about it all the time. He was very, very ill before he was diagnosed with Crohns and Humira gave him his life back.
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