Just started humira; several questions?

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

orangeman
Regular Member


Date Joined Oct 2007
Total Posts : 36
   Posted 12/7/2007 12:16 PM (GMT -7)   
My GI just prescribed Humira, off-label, for my Ulcerative Colitis since I had a severe reaction to during my second Remicade infusion.  I am sensitive to all the 5-ASAs drugs, increased Diarrhea, bleeding, more frequent BMs, etc.  I have been slowly tapering prednisone with a few bumps along the way, down from 60mg/day in August to 20mg now.  The plan is to taper down by 2.5mg every two weeks after my second dose of Humira.  I had the initial loading dose (4 injections on 5 December) and will have the second dose (2 injections) on the 19th.  Then a single dose every other week.

My current symptoms are 1-3 BMs per day, mostly soft and formed with the occasional (1-2 per week) loose stool.  I tried the Specific Carbohydrate Diet for one month, but did not see significant changes except I lost 8 pounds.  I stopped SCD on Thanksgiving and am trying to gain back the lost weight.  (I am 5'9", 144 lbs).  During my first flare in June 2007, I lost 40 lbs, left the hospital after 28 days at about 130 lbs.  I had been hovering between 152-155 since leaving.  My goal is to get to 160, but I'll be happy with minimum UC symptoms and no weight gain.   

I have several questions on Humira.  Are using it for UC or Chrohns?  What side effects did you have?  Did you see an increase in gas?  How long before you saw any positive effects?  Do you use the pre-filled syringes or the injector pen?  I used the syringes which were not too bad, slight burning for a few seconds after injecting.    

UC since April 2006; first flare May 2007, hospitalized 28 days.

Remicade infusion brought symptoms under control, but caught MRSA infection from PICC line.

2nd Remicade at 14 weeks, severe reaction, no more Remicade

currently tapering prednisone (20mg/day down from 60), will taper 2.5mg after second Humira injection, crossing fingers that Humira will help me get off the prednisone


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/7/2007 2:23 PM (GMT -7)   
Hi orangeman, I would recommend also making this post in the Crohn's disease forum, as Humira is typically given to Crohn's disease sufferers. Although they have a different illness, I'm sure their insight and experiences with Humira will be interesting for you to read.
Currently hoping that Remicade (infliximab) will be the answer I've been looking for over the past two years! I've used Asacol (mesalamine), Imuran (azathioprine), prednisone, and Salofalk (mesalamine) enemas. Currently I'm using prednisone, Asacol, and Imuran while awaiting my first Remicade infusion.


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 12/8/2007 4:29 AM (GMT -7)   
Orangeman,

My GI has recommended Humira for me. I am not responding well to other drugs.
I was curious to know if you have insurance and does it cover Humira for UC.
 
I would love to hear updates on how the Humira is working for you.

Thanks

orangeman
Regular Member


Date Joined Oct 2007
Total Posts : 36
   Posted 12/8/2007 5:37 AM (GMT -7)   
Hobo,

I am in the Army and I had no issues with Tricare (military insurance) covering the Humira.

I will keep you posted on my progress. Since it's only been three days so far, I have not noticed any changes. We'll see what happens when I lower my prednisone dose in a few weeks. The last time I went below 20mg, symptoms started to return.

------
UC since April 2006; first flare May 2007, hospitalized 28 days.
Remicade infusion brought symptoms under control, but caught MRSA infection from PICC line.
2nd Remicade at 14 weeks, severe reaction, no more Remicade.
currently tapering prednisone (20mg/day down from 60), will taper 2.5mg after second Humira injection, crossing fingers that Humira will help me get off the prednisone

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/8/2007 5:50 AM (GMT -7)   
Wow, orangeman, try to keep your insurance as long as you can. Most health insurance now specifically excludes treatments that haven't been approved by the FDA. Having that coverage could be worth a lot to you!
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 12/9/2007 12:35 PM (GMT -7)   
I am able to get down to 15mg of Prednisone but if I go lower my symptoms return.
I am also on 150mg of Imuran and Asacol which doesn't seem to be helping.
My GI is not recommending Remicade. She feels that it would not help since other treatments have not helped.

I'm very frustrated. Thinking about seeing another GI for a second opinion.

Post Edited (Hobo) : 12/9/2007 12:35:56 PM (GMT-7)


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 393
   Posted 12/10/2007 7:05 AM (GMT -7)   
orangeman said...
My GI just prescribed Humira, off-label, for my Ulcerative Colitis


Off label? Does this mean generic? I didn't think that was available. . . are you in the USA?

My doctor has brought it up as an option for me but luckily the azathioprine has been working relatively well. But when I researched it, the cost was insane. (Two grand a month, but four grand for the first month, if I remember right.)
12 Asacol
100 mg Imuran
6 or 9 fish oil pills
4 Acidophilus pills


orangeman
Regular Member


Date Joined Oct 2007
Total Posts : 36
   Posted 12/10/2007 9:17 AM (GMT -7)   

UCinGV,

I am in the USA.  Off-label means that the drug has not been FDA approved for the specific illness.  In this case, Humira, has not been approved for UC yet.  From what I understand, severla clinical trials are ongoing.

The cost I was quoted from the Pharmacist was $350 per dose.  First injection is 4 doses ($1400), then 2 doses two weeks later ($700), and then 1 dose every other week ($350).  So ~$2500 for the first month.

 


UC since April 2006; first flare May 2007, hospitalized 28 days.
Remicade infusion brought symptoms under control, but caught MRSA infection from PICC line.
2nd Remicade at 14 weeks, severe reaction, no more Remicade.
currently tapering prednisone (20mg/day down from 60), will taper 2.5mg after second Humira injection, crossing fingers that Humira will help me get off the prednisone


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 12/10/2007 7:44 PM (GMT -7)   
I called my insurance company today and they said that I would be covered for using Humira for treating UC.
I have Blue Cross Blue Shield of IL.

I will probably call my GI and get started.

I might go see a new GI for a second opinion.

Orangeman, please keep us posted with updates.

Thanks

superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 12/10/2007 8:40 PM (GMT -7)   
I'm supposed to start Humira after Xmas break, as long as my TB test and insurance are all good.

I've been taking Imuran for a month, first three weeks were fine, then I started vomiting and getting horrible back and stomach pain, still have it and then my latest blood work shows wacky numbers and I'm off the Imuran for good.

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 12/11/2007 8:06 PM (GMT -7)   
OK, I called my GI today and said to get me started on Humira. She is having it sent to my pharmacy.
After that I will go to visit my GI and they will show me how to administer it.

I'm feeling optimistic.

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 12/16/2007 8:58 PM (GMT -7)   
Haven't started Humira yet. My GI gave me a Humira package to look at over the weekend. It included a video to watch.
 
I am calling her tomorrow to let her know I'm ready to start.

orangeman
Regular Member


Date Joined Oct 2007
Total Posts : 36
   Posted 12/20/2007 12:50 PM (GMT -7)   

Hobo,

Did yo start your Humira? 

I had my second dose yesterday (2 injections) which wasn't too bad.  Injecting in my stomach was less painful than my thighs.  There is some burning (about 3-5 seconds) that goes away quickly.  So far, no adverse reactions.

I think it's working, but will not know for sure until I start tapering the pred.  I saw my GI this week and he wants to start my pred taper after 4 doses which will be the end of January.  I'll keep you posted.


UC since April 2006; first flare May 2007, hospitalized 28 days.
Remicade infusion brought symptoms under control, but caught MRSA infection from PICC line.
2nd Remicade at 14 weeks, severe reaction, no more Remicade.
currently tapering prednisone (20mg/day down from 60), will taper 2.5mg after second Humira injection, crossing fingers that Humira will help me get off the prednisone


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 12/24/2007 5:25 PM (GMT -7)   
I have not started yet. I just got the negative results on my TB test so I am good to go.
I am taking the prescription to my pharmacy this Thursday.

I think I will opt for the Humira Pen. I can't stand hypodermics.

I'll post followups.

superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 12/25/2007 3:18 PM (GMT -7)   
I also just got my neg TB results and I'm waiting to get a good blood test when I return from Xmas (levels are still screwy from Imuran) and then it's Humira time for me too! I am excited.

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/25/2007 7:53 PM (GMT -7)   
Thanks to everyone for sharing their experiences. Keep us updated please! I will be starting Humira in 6 weeks or so and I will post my experience here as well.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 12/29/2007 11:39 AM (GMT -7)   
I picked up my prescription last night. A Humira nurse called me. They want to send a nurse to my house to show me how to administer the drug.
They said someone else would be calling me on Monday to schedule the appointment.

I watched the video and it seems pretty straightforward but I guess I'll wait for the phone call.

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 1/3/2008 4:15 AM (GMT -7)   
I started my Humira on Jan 1 2008. The nurse came to my home and I took my first two injections.
 
Took two more the next day.
In two weeks I take another.
 
It's supposed to take about four weeks to kick in. At that point I will start tapering down from 15mg prednisone to 0.
 
I really hope this works.
 
By the way, the injections are very easy. I opted for the injection pen.

orangeman
Regular Member


Date Joined Oct 2007
Total Posts : 36
   Posted 1/3/2008 7:17 AM (GMT -7)   

I did my third injection yesterday in my office at work.  First time outside a nurse's presence.  It took a few minutes for me to get up the nerve to do it, but it was fine.  Slight burn for a few seconds.  No noticeable reaction and even worked out later in the day. 

My GI wants me to have five doses before I start tapering down from 20 mg predisone.  I plan to start the taper the beginning of February.

I too hope this really works.

I am using the pre-filled syringes.  The injections seem easier in my stomach then my thighs. 


UC since April 2006; first flare May 2007, hospitalized 28 days.
Remicade infusion brought symptoms under control, but caught MRSA infection from PICC line.
2nd Remicade at 14 weeks, severe reaction, no more Remicade.
currently tapering prednisone (20mg/day down from 60), will taper 2.5mg after second Humira injection, crossing fingers that Humira will help me get off the prednisone


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 1/20/2008 10:59 AM (GMT -7)   
Had my third injection last week.
Going from 15 to 10mg prednisone starting today.

Stay tuned.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, February 24, 2018 3:29 AM (GMT -7)
There are a total of 2,932,709 posts in 321,769 threads.
View Active Threads


Who's Online
This forum has 160463 registered members. Please welcome our newest member, Cfwyfe.
146 Guest(s), 2 Registered Member(s) are currently online.  Details
Rockon, almost medfree