Strike one (Remicade fails), Humira next?

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

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 4/6/2009 5:19 PM (GMT -6)   
Well, after a few infusions I had a bunch of joint aches and it turns out my Antinuclear Antibodies (ABA) got elevated so it looks like the plan to double my dose or even to continue remicade, to bridge the gap of several weeks where the remi sputtered out, is over and done with.  Humira is next on the table if my insurance approves (which sounds iffy from what I read on these posts).  I am also half hoping that they don't approve Humira as these biologics to me stink.  I'd much rather get back to tinkering with, say, helminthic (parasitic worm) therapy- something resident in the body for millions of years and in hundreds of millions to a couple billion people worldwide today as opposed to thousands of people on a drug for 10 years or so.  Has anyone here who reacted to the Remicade had success with Humira?  Mu understanding is that if Remicade doesn't work all that well, Humira usually doesn't either.  In my case the remi worked like a charm for about 2-3 weeks each time and then sputtered out.  How often are the Humira injections and are they as painful as some make them out to be? (Surely the pain is a joke compared to UC pain).
 
 
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Currently Remicade and lots of probiotics, tapering pred again, maybe surgery this year
 
 


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 4/6/2009 5:26 PM (GMT -6)   
I've never had remi but I'm on humira. So far so good. You take four pens at the beginning and then depending on what your doctor thinks is appropriate you may take a pen or pens weekly, bi-weekly or monthly. I'm current on one pen every other week. As for pain-- its isn't so bad at all. FOr some reason though, the right side where I inject hurts much more than the left side...so I keep to my left side, change the exact location every time.
Ryan


Meds:
Began Humira on 10 Jan 2009

Humira pen (1) weekly WIE UFN

Rowasa nightly

Probiotics + protein digestive enzymes


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/6/2009 6:52 PM (GMT -6)   
I don't understand why you're contemplating Humira since you're so against it. Taking a medication is always your choice, so you can always decline the offered treatment and try whatever else you want.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/6/2009 8:23 PM (GMT -6)   
I had a horrible reaction to Remicade, when I switched over to Humira I have done great. Next month will go on 2 years with Humira. Been in remission since I've been on Humira. The shots (pens) will catch you off guard for a bit, but you only take 4 injections the first time, then 2 weeks later 2 injections. Depending on your doctors' preference you may quickly bump down to 1 injection every 2 weeks. I stayed on 2 pens every 2 weeks for about a year and a half. I bumped down to 1 injection every 2 weeks in January. For me, the pen injecting caught me off guard, it does hurt a little, but for me it's the after effect, ice usually helps that problem.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 4/6/2009 8:51 PM (GMT -6)   
Judilyn said...
I don't understand why you're contemplating Humira since you're so against it. Taking a medication is always your choice, so you can always decline the offered treatment and try whatever else you want.

Judilyn,
Only because the one thing I am still not quite ready to do is surgery. and nothing but pred seems to keep me from flaring.  Well, one other thing has helped somewhat- TSO (pig whipworm eggs)- but its not covered by insurance and is siimplly too expensive, and wasn't able to keep me off prednisone.  My attitude towards these biologics are that our bodies have no business being subjected to them, but if, like me, you want to buy some more time to avoid amputating the colon, then a year or two on them may buy that time to find something better (eg other types of parasites that colonize longer term and therefore are not as expensive).
Thanks for all the replies- I think I will at least try humira.  There is no reason to automatically assume it will fail just because remi failed. 
 

Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Currently Remicade and lots of probiotics, tapering pred again, maybe surgery this year
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/7/2009 7:15 AM (GMT -6)   
well however it goes, please let us know what happens with your insurer- if they cover it, how did your GI get them too, etc. That's what really interests me, the coverage! I have to say, I too am a little puzzled by your decision to try Humira, & your obvious dislike of it. I know what you mean, about not ready for surgery, but 1-2 years on these drugs isn't a short course either! So the ABA are the antibodies to the Remicade? And truthfully, does your GI seem to think the Humira will help?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 4/7/2009 8:48 AM (GMT -6)   
Eva Lou said...
well however it goes, please let us know what happens with your insurer- if they cover it, how did your GI get them too, etc. That's what really interests me, the coverage! I have to say, I too am a little puzzled by your decision to try Humira, & your obvious dislike of it. I know what you mean, about not ready for surgery, but 1-2 years on these drugs isn't a short course either! So the ABA are the antibodies to the Remicade? And truthfully, does your GI seem to think the Humira will help?

Apparently my insurance should approve the Humira on account of the Remicade having failed, but it may require a paperwork delay.  As for hating biologics but still using them- it's a case of it being the best of all evils right now since I am not quite ready yet to "destroy the village in order to save it" (that is, remove the colon).  Yes, the ANA was elevated.  And my GI does consider Humira a viable option to try.


 


Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Currently Remicade and lots of probiotics, tapering pred again, maybe surgery this year
 
 

Post Edited (Probiotic) : 4/7/2009 7:52:12 AM (GMT-6)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/7/2009 8:55 AM (GMT -6)   
I believe that my paperwork went through real fast since I had an allergic reaction to Remicade. I was able to pick up my first dose of Humira that same week.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/7/2009 9:08 AM (GMT -6)   
If you could only walk in my shoes for one day I think you would toss the colon and the drugs away! I hope you find success with worms or humira.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 4/7/2009 9:37 AM (GMT -6)   
Probably true, Sue- but I do want to try a couple more things and need to buy some time. Fecal infusions for one thing (getting a huge battery of tests set up for my donor), and sterile human whipworm (the human, colonizing version of the transient pig whipworm TSO that worked on me before) which I am hoping to be able to obtain very soon, for another. I would trade out the colon if I knew for sure I'd have your great outcome, but there are no guarantees, so I want to thoroughly exhaust all my options first; and added to that is my concern that I get the colon removed only to discover it was crohn's all along and then be right back where I started from, perhaps still prednisone dependent.


Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Currently Remicade and lots of probiotics, tapering pred again, maybe surgery this year
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 12:53 AM (GMT -6)
There are a total of 3,006,335 posts in 329,327 threads.
View Active Threads


Who's Online
This forum has 161827 registered members. Please welcome our newest member, a8166008.
257 Guest(s), 2 Registered Member(s) are currently online.  Details
Deep_sleep, kittytalk371