Humira, anyone?

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Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 8/22/2007 5:06 AM (GMT -7)   
Hi Everyone!
First time posting on this forum, but have been reading quite a bit for the last year every now and then when my hubby has a flare.  My husband was dx'd with UC in March 2006, everything seems to bother him diet wise.  However I am not with him 24 hours a day, so what I see him eat is very little and usually pretty healthy at night when we get home from work.  Within the last few months I was dx'd w/Lyme disease and put on a no refined sugar and very low carb diet.  Since I have been cooking this way for dinner or on the weekends, it seems my hubby has been in a small flare and then this last week a full blown very painful flare.   He stopped taking his flagyl and asacol about 4 months ago because it was causing him shortness of breath and low back pain (per hubby's dx) and 'not helping any ways'. :o(
 
A friend of mine at work has Crohns and has been using Humira and he said that it can be used for people with UC as well.  He can't say enough good about the Humira and he has had Crohns for 30 years and says tried everything to help (including the flagyl and asacol) him and nothing did until he got on the Humira. 
 
Finally my question... Does anyone here take Humira with a UC dx?  If so, is it helping you, have you had any side effects of it? 
 
One other question.. Do any of you take anything for the fatigue that comes with this?  My hubby could sleep for 24 hours if he didn't have to work and if he's not sleeping, he's very lethargic and has no energy to do anything. 
 
Sorry for all the questions... Thanks for listening..

“There are those who look at things the way they are, and ask why... I dream of things that never were, and ask why not?”

—Robert Francis Kennedy

Drugs, minerals and vitamins. Oh My! - Neurontin, Metanx, Omega3, Ultra Flora, Nystatin, VitB12+ (liquid and pill), Cat's Claw(Samento), CoQ10, Iodoral, Lithate, Vanadium, Nature-Throid, Germanium, Copper, Zyth and Amox.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 8/22/2007 5:46 AM (GMT -7)   
I recently asked my GI about Humira and he said that it is used more with Chron's and Remicade was proven better with UC. They are similar I know that but I'm not sure how. Others may be more knowledgable.

Good Luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, back to 30 mg pred.
Waiting for prometheus test to start Immuran
Prontonix once daily for acid reflux, zofran twice daily for nausea


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/22/2007 5:52 AM (GMT -7)   
I am not that well versed about Humira from a personal point of view. My Godchild's very good friend has suffered with a very acute case of UC for a number of years. She is probably 30 with several small children. Surgery was imminent and Humira was prescribed as a last resort after not responding to many other medications prior to that. This gal suffered very badly - don't know how she raised babies like many here on this forum - has a husband with a very demanding high profile job so she is home alone alot raising the children. He is a wonderful husband, father and provider but can't be there much to help her burden.

She is doing amazingly well and the surgery topic is off limits - or at least for now. She definitely has UC and not Chrons from what I am told.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis now & fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 starting to feel somewhat normal 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night.


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 8/22/2007 6:07 AM (GMT -7)   
Much thanks to you both for your replies.

He is trying to get into his dr this week and hopefully they will give him some prednisone to help with the flare. I know he was on 9 Asacol/ day and I don't know how much flagyl he was on. Maybe the dr will just bump that stuff up first, but I do know it really has not helped much for the past year and 1/2.

Thanks again.

“There are those who look at things the way they are, and ask why... I dream of things that never were, and ask why not?”

—Robert Francis Kennedy

Drugs, minerals and vitamins. Oh My! - Neurontin, Metanx, Omega3, Ultra Flora, Nystatin, VitB12+ (liquid and pill), Cat's Claw(Samento), CoQ10, Iodoral, Lithate, Vanadium, Nature-Throid, Germanium, Copper, Zyth and Amox.


sarah123
New Member


Date Joined Jan 2006
Total Posts : 16
   Posted 8/22/2007 7:28 AM (GMT -7)   
hi
actually-i came to this website looking for humira info...my MD has recently suggested it for my UC, as the 'regular' routes are not working (ie/ been on asacol, now on 150mg of imuran)...and i wanted another option than prednisone (again)...apparently, they are doing some studies to see how humira works w/ UC pts...so i think i might join the study and try it out.
 
i know remicade is another option- but one good thing about humira is that its an injectable vs. infusion...not a big diff, but i have a small baby at home, and popping in to get a needle is better than having to sit and get infused.
 
 

DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 495
   Posted 8/25/2007 10:24 PM (GMT -7)   
I asked me doc to try Humira. He said thats it a big jump from no meds to Humira. I told him that its time to get serious and get my life back. I cant stay on any diet, honestly I am an idiot.

I went to CVS and found out how much its going to cost me, CVS's cost for two pens is $1600. My cost is $400, so percentage wise not bad. But it would cost me $1600 for the initial month and 800 after that.

What are these fools thinking? I would do if it guarantees a cure. I have a none heard of insurance company. I called them and they told me to call caremart. I was driving and didnt get the number right, by the time I called them back they where closed. I called Humira thursday for assistance and they have called me back yet.

I am at a loss.

UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 388
   Posted 8/26/2007 7:05 AM (GMT -7)   
My doctor said I might be going on it. Won't find out until the 6th.

Check with your prescription drug insurance company about direct-mail Humira - mine would charge about $400 a month if I got it at CVS, but going from the drug company directly, I have a $1000 per year max out-of-pocket cost, which would save thousands. The only problem is Humira has to be kept at a specific cold temperature, so they mail it with ice packs and it risks getting damaged in shipment. However, I think it'd be worth it to save a few thousand dollars.
12 Asacol
100 mg Imuran
6 or 9 fish oil pills
4 Acidophilus pills
4 Caprylic Acid pills


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 8/26/2007 6:47 PM (GMT -7)   
my GI is actually more comfortable with the idea of using Remicade than using Humira. I don't know much about it, but I do know that Humira is off-label for UC, but I think Remicade is also..... definitely some people use humira for UC.
29/Female/NC
Pancolitis dx 3/07.
Currently on 12 Asacol a day.
*100mg Imuran b/c steroid dependent.
*back on prednisone while Imuran kicks in. Down to 5 mg on 8/13.
Various vitamins, probiotics, fish oil.
Engaged: June 1, 2007


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4801
   Posted 8/26/2007 8:24 PM (GMT -7)   
Remicade is an FDA approved treatment for UC..... so you will probably see better coverage by your insurance company for Remicade. Your insurance company has the right to refuse to pay for humira because it is off-label for UC (some people also have AS or RA so they can get Humira for that instead of UC).... you can appeal their decision. Some insurance companies will pay for Humira for UC; I guess the way they look at it is that it is cheaper for Humira than a hospital stay. Right now it is only FDA approved for Crohns but some GIs will write scripts for off-label humira treatments for UC patients.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  6-mp & Colocort
Supplements:  None 
 


Luckyfrog
New Member


Date Joined Aug 2007
Total Posts : 5
   Posted 8/27/2007 6:35 AM (GMT -7)   
I have had amazing luck with remicade. Basically humira is the humanized form of remicade. Remicade is an infusion, and Hunira is shot form. My insurance helps me out a lot. I have thought about changing to humira, but right now i am scared to change what has been a miracle for me. As for fatigue, i use to live my life like that everyday. I would try to go to work and school, but i was constantly run down. Fatigue w/ UC is usually from malnutrition.
Diagnosed with UC in 2001. In remission since January of 2006.

Remicade: Every 8 weeks

Imuran: 100 mg

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