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Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 2/12/2008 8:11 PM (GMT -6)   
Instead of looking for the old thread I thought I would just start a new one.

I just took another Humira injection so I thought I would give an update.

Before I started Humira I was on 20mg Prednisone, 150mg Imuran and Asacol - 3 pills, 3x a day.
I've been on Prednisone almost four years. Could never get below 15mg without going into a massive flare.

I started Humira on Jan 1, 2008. I started weaning off of prednisone right away but not at at the 5mg a week like my GI suggested.
I got down to 10mg and was still doing fine but I was a little hesitant to go lower. I really wanted to give the Humira a chance to work.

After being at 10mg Prednisone for about two weeks I finally dropped to 5mg one week ago. I was terrified of a flare starting

BUT,

I am doing great. One or two bowel movements a day. No diahrrea, no blood no abdominal cramps, not even a stomach rumble. In the past stomach rumbling meant that I was headed for a flare.
In the past if I dropped to 10mg for prednisone I usually started flaring after just a couple of days.

I really feel GREAT! I am still worried about getting to excited because it seems to good to be true. I have also dropped to 3 pills of Asacol, once at night.

So far, so good. I will call my GI this week and ask her when I can stop prednisone completely. I'm sure she'll say to stop right away. If she does, I am going to stop.

I have to do a self injection of Humira once every two weeks. It is very easy. It administered using an injection pen. You hold it against your skin and press the top button. Count to 10 and your done. My insurance covers it and Humira sent me a CoPay plus card which covers the prescription copay that my insurance doesn't cover so I end up paying nothing.

Anyways, there's my update for now. I will update again at a later date.

Post Edited (Hobo) : 2/13/2008 2:30:08 AM (GMT-7)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 2/12/2008 8:27 PM (GMT -6)   
Awesome Hobo! That's great to hear -- I remember the feeling when I started Remi; I couldn't believe that it worked so quickly and kept "waiting" for the end and start a flare. I'm glad it's working so well for you; maybe I'll head that direction too. Keep us updated on how you are doing.
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/12/2008 8:31 PM (GMT -6)   
Hey Hobo - thanks heaps for the update. Great to know that the Humira is working for you.

With regard to the prednisone withdrawal, you said you'd been on at least 20mg for the past 4 years. Be very careful dropping from 5mg to nothing. Nearly all GI's will get you to taper by 1mg a week, or sometimes a fortnight from 5 to 0 due to the massive amount of time you have been on it.

For me, the Abatacept helped me get down to 5mg pred, but the withdrawal symptoms from 5 to 0 were incredibly unpleasant, both physically and mentally. Depression, absolute lack of appetite, weight loss, vomiting, D... The list of side effects was pretty long for me.

Hopefully you don't get any of that, but just be wary of dropping pred quickly after being on it for so long.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-MP twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xteaspoon of Metamucil smooth powder 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day;
    - 3xGarlic Oil caps 2 times a day, 5mL Olive Leaf Extract 2 times a day.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/12/2008 10:40 PM (GMT -6)   
Woo hoo! I am very happy for you. I do have a selfish reason being that I am eventually starting Humira, but even if I wasn't, I'd be happy for you, I promise. I hope it just gets better and better for you.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 2/13/2008 3:32 AM (GMT -6)   
I just reread my post and made an edit. I am completely off of Imuran. I am taking 3 pills of Asacol once a day.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/13/2008 6:43 AM (GMT -6)   
Thanks great news! Please keep us a posted. I think you are the only one (or a few) that is on Humira for UC.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 2/13/2008 1:39 PM (GMT -6)   
This is wonderful news. I am glad to hear about the Humira working. I was supposed to start it but, my dr. wanted to check to see my anti-body levels of Remicade. I am waiting on those results and then, we'll see.
She is saying that I might have to go on a higher dose of Remicade to see if that may help my remission.
All I know is that now I am on Prednisone and I want to be off of it and soon!!
Thanks for this update!
UC diagnosed in 1985...22 years.


Was on Remicade...no longer working for me as of January 30, 2008



50 mg 6mp, Rowasa and Cortenemas as needed.
Probiotics and Aloe Vera Gel (Just started this a few days ago...)


superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 2/13/2008 9:35 PM (GMT -6)   
I, too, might be having good luck w/ my Humira. My second shots were a lot less painful than my first- I left the pens out for 30 minutes to warm up as recommended by some people on the Crohn's board. I'm still on Pred for a bit, but crossing my fingers.

Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 3/8/2008 6:38 PM (GMT -6)   

OK, another update.

Severin, you were correct. I was doing fine at 5mg of Prednisone but when I went to 2.5 I started to get some blood. After a couple of weeks my bowel movements increased to about four a day.

I visited my GI last week and she agreed that the tapering was too quick. She bumped me back up to 10mg prednisone for the next four weeks. At that point I am going to decrease by 2.5mg every month.

Humira was and still is working but the prednisone taper was too quick.

I take another injection this Tuesday.

I will keep posting updates.


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 3/8/2008 10:04 PM (GMT -6)   
Hobo, thanks for the updates. I think a lot of us are really interested in Humira's effects on UC. Heep us posted.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/9/2008 7:14 AM (GMT -6)   
I'm so torn, as far as trying Humira... now were you on Remicade prior to the Humira, Hobo? I
f so, what happened with it, why are you off it? And the others on here about to start Humira, same question- did you stop responding to remicade or just not try it at all?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 4/13/2008 12:58 AM (GMT -6)   
I was never on Remicade.
My GI wanted to try Humira.

Here is my latest update:

I've been on it since Jan 1st of 2008. Initially it was working great but when I started tapering off of the prednisone I started flaring again.
I was always on 20mg. I tapered every two weeks. I went to 15, then 10 then 5 and was doing great. When I got to 2.5mg I started flaring.
My GI said that we probably tapered too fast since I've been on prednisone for so long.
We are now doing a very slow taper. In the past I was never able to get below 20mg of pred without flaring.
I'm doing great now on 10mg and in two weeks I drop down to 7.5mg.

Looks like I'll be tapering 2.5mg every four weeks.

UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/13/2008 1:22 AM (GMT -6)   
Thanks Hobo for sharing your experience with Humira. My husband is also on Humira. So, it is interesting to compare notes.

I know a few mentioned that they would like to know more about Humira in UC patients, so please don't hesitate to ask...I'll answer the best I can.

Hobo, when did you start seeing results with Humira? Do you know if it's the Humira that's helping you or the predisone?

Good luck with the Humira and I hope you can successfully wean yourself off the predisone. Will keep my fingers crossed for you.

princesscolon and superdeejayanna, I hope you both are continuing to do well on Humira? Are you both on predisone as well?

Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/13/2008 4:13 AM (GMT -6)   
Thanks for keeping us updated Hobo - its greatly appreciated as I will soon be starting a drug very similar to Humira (Golimumab) which my GI believes is very promising. I really hope it works as well for me. I was the same. Totally dependant on prednisone to give me any kind of life.

The Abatacept helped get me off the prednisone, but 4 months later; after a breakup, subsequently moving house and also quitting smoking, I seem to once again be heading toward a flare. Though from past experience, I believe this is mostly from quitting smoking.

EVERY time I have quit smoking, I have flared seriously and the only way I seem to get back under control is to start again :-(
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xAbatacept 10mg/kg per month;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.


glaciergrl
Regular Member


Date Joined Apr 2005
Total Posts : 269
   Posted 4/13/2008 5:56 PM (GMT -6)   
How long did it take your humira to work? I have been on it since december and I'm not sure its working for me.
Holly

entocort
humira

**Please edit your signature to 10 lines or less. Blank lines included. Thanks!**

Post Edited By Moderator (tjf) : 4/13/2008 6:09:44 PM (GMT-6)


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 4/13/2008 7:03 PM (GMT -6)   
If I remember correctly I gave it a month before I started tapering my Prednisone.

orangeman
Regular Member


Date Joined Oct 2007
Total Posts : 36
   Posted 4/14/2008 9:03 AM (GMT -6)   

I started Humira in December.  It's been four months now.  I have no issues with it.  I have 1 BM per day, occasionally 2. 

I could never get below 20mg Pred without flaring.   My GI would not start tapering until I was on Humira at least four months.  I hit the four month mark last week and started the taper on Thursday (2.5mg every two weeks).  So far, so good.  In the past, the symptoms appeared about two days after starting the taper.  I'm keeping my fingers crossed that the taper will go well.


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.
tapering prednisone (20mg/day down from 60), started taper 4/10/08 (2.5mg every two weeks)
Humira - 1 shot every two weeks (since December 2007)
Calcium - 2x per day
Multi-vitamin
 


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/14/2008 2:31 PM (GMT -6)   
Is anybody taking Humira without predisone and have still seen results?

barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 467
   Posted 4/17/2008 5:43 AM (GMT -6)   
Hobo
 
It's great to hear you are doing so well on Humira.  about your pred taper.  I, too, have been on pred for a very long time. I have been on pred for 5 years now, and flare every time I get below 10mg. I am on Abatacept trial now, so im hoping that will allow me to get off it. 
 
When you get to the 10mg mark, I think a 2.5mg drop is WAY too big.  Not only do you risk flaring, but the withdrawal is so bad. If I drop by 2.5mg I am virtually unable to walk and get awful night sweats, cramps, depression. List goes on and on.  PLEASE PLEASE get 1mg tablets. I would come down by 1mg every two weeks, and even slower if you get  bad withdrawal. 
 
Believe it or not, the last time I tapered, I came down from 4mg to 3.5mg - only 1/2 a mg, and I sufferered severe withdrawal.  I am convinced, if I reduced by any more in one go, I would have flared.
 
Best of luck.
Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 

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