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ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 4/13/2009 10:28 AM (GMT -6)   
Hello All,
 
I haven't been on the site the last year or so since I was living my life in Remission.  The last month or so I've been dealing with a brutal flare; I've been using Colocort and it has been helping with the urgency but the D is not stopping.  I have an appointment with my GI on Thursday and I am going to ask about humira.  I'm too busy right now to go into the hospital for 2 weeks and have j-pouch surgery.
 
My question(s) are: 1) is Hurmira working for most UC patients and how long does it take to see improvements?
2) Is it a PITA to get the insurance company to pay for Hurmira?  I have an HMO and they pay for almost everything but I usually have to jump through flaming hoops to get things paid for.
 
I have not tried Remicade yet but I don't want to go for IVs.
 
--Keith
DX'd with Pan-Colitis June 2005
Current Status: Remission
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/13/2009 10:42 AM (GMT -6)   
Peety will probably have a lot to say about this! She wanted to do Humira, too, but her insurance denied her, so she'll be doing Remicade.
At any rate, good luck if you do decide to try Humira, both with your insurance and if they approve it, with it working well for you!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/13/2009 10:56 AM (GMT -6)   
I doubt your insurer will cover Humira unless you try Remicade first- unless you fail with Remicade, they will not cover Humira for UC. Apparently, a lot of insurers won't cover it even if you do fail on Remicade! I know some of the people using Humira on here have military insurance, which does cover it- there are a couple others who can maybe give you some advice. The IV's aren't bad with Remicade, but it does take up a lot of time- my whole infusion is a 4 hour time slot in that day! From the time I leave to the time I return. The infusion only takes 2 hours. Also- sorry to hear you're flaring- it has been a good long run, though!

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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/13/2009 11:02 AM (GMT -6)   
Yep, I'm doing my first infusion of Remicade right now! My doc was willing to write a letter to BCBS to further pursue Humira, but we knew it was iffy. (you probably know it's not approved yet for treating UC, only crohns). Maybe after paying for Remicade for a while they might see it makes sense...oh, never mind, we're talking about the insurance industry! Anyway, doc says when Humira is approved for UC, which is hopefully in the works, I can switch later no problem. Just can't go off Remicade then go back on it.

I, too, was interested in the convenience...and don't have time for surgery. this will have to do. Fingers crossed that it works.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Flaring, seasonal? Back on prednisone, tried to taper but now back up to 30 after several really bad days. Humira denied, waiting for approval to start Remicade. 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 4/13/2009 11:30 AM (GMT -6)   
Thanks All. I guess that I am going to have a long discussion with the GI on Thursday. I am also concerned about the slight increase in certain cancer rate with using both 6-mp and Remicade.

I'm at the point in my flare where I am losing weight so I don't think that I can slug it out with the insurance company and wait for approval.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Remission
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 4/13/2009 11:33 AM (GMT -6)   
Sorry to read that you're flaring again, Keith. I was hoping for you to enjoy a really long remission after the last cyclosporine bout.'Til you see your gastro maybe low residue food would give you some help in reducing the D. Let us know how you're feeling as time permits, eh? / Old Hat (30 yrs with left-sided UC; presently recovering from flare in sigmoid colon)

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/13/2009 12:56 PM (GMT -6)   
Keith,

I am sorry for this turn of events; you had been doing well for a long time. I hope that you are able to find something to get you stabilized. My thoughts are with you.

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


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 4/13/2009 2:20 PM (GMT -6)   
Keith-I am so sorry about your flare.

I am in a trial for Humira, so as for now (and the next five years, if I stay in the trial), so I am not sure whether or not I would be able to get it otherwise.

But it worked for me immediately. This first year has been double blind, so while I would be uber excited to find out I wasn't actually getting it, I have enough reasons to know I am. I have had a few bumps, and I have some side effects from it, but I went from about 15 bloody BMs a day to about 4 on pred (which I was given in the hospital) and within the first week in the trial, I was down to one BM a day with no blood. It stayed that way until January of this year. Then I started going back to the gym and my internal roids flared-GI gave me anucort for that and that sent me into a full UC flare. I know that is odd, but it definitely did. Anyway, since then, I am still seeing streaks of blood, but with the help of canasa, I am back to one BM a day.

Good luck with everything.
Laura
 
33 years old, stay at home mom of 2 girls, ages 3.5 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Canasa suppositories-1000mg nightly for recent flare


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 4/13/2009 3:13 PM (GMT -6)   
Thanks everyone for your replies.... I am amazingly calm about this flare; I am not upset, not angry, and I am not losing sleep over this (expect when I wake up to go to the bathroom).

I'll let you know how my GI appointment goes.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Remission
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/13/2009 6:44 PM (GMT -6)   
When I was switching from Remicade to Humira, my doctor told me that it's only because Remicade wasn't working for me that I'm able to be on Humira. It's almost like a requirement to try Remicade before you move onto Humira.
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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/14/2009 12:08 PM (GMT -6)   
Which is crazy, because isn't Remicade more expensive? I assumed so, with the need for people to tend to you during the IV, etc.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Flaring, seasonal? Back on prednisone, tried to taper but now back up to 30 after several really bad days. Humira denied, waiting for approval to start Remicade. 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 4/14/2009 4:54 PM (GMT -6)   
Hey Keith, good to hear from you, but not under the "flare" condition...I'm so sorry my friend. I believe that RyanF started the Humira; check back a bit on the posts or search and maybe you can find his log and how he is coming along with the Humira. Take care, and hope you get this flare under control soon. Thinking about you!

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 4/17/2009 2:13 PM (GMT -6)   
I spent a long time with the GI yesterday and he gave me a few options.

initial course of action is Colocort (once a day) and Cortifoam (twice a day). He gave me a script for Tylenol 3 for the pain in my knees but he said it will help slow my colon down which will help with the D. He also wrote me a script of an anti-spasm med for my colon.

over the next week or so I will discontinue the 6-mp because I will be taking either Remicade or Humira. I do not want to risk the slight cancer risk associated with 6-mp and Remicade, plus I really do not like taking 6-mp because of the fatigue that I feel from it.

about the biologics; he said that I can have Remicade without a problem which will take a week or two for insurance approval. He said that he was first going to try and have Humira approved and Remicade would be a back up plan.

Here is the twist, they are running a UC Humira study at his practice and he said that he can probably get me in the trial. I told him that I did not want to take a placebo, I would also have to visit his office on a regular basis for exams as part of the trial. So if I had my heart set on taking Humira I can do it.

We also discussed a 3rd round of Cyclosporine (I've been on it twice before) which I am not interested in because it would require another hospital stay.

He did recommend surgery which I will do but I want to do it on my schedule. So it will be either remicade or humira to get me through until surgery. I am actually really excited to be starting a new medication, I wasn't happy on 6-mp because it drained my energy levels.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/17/2009 8:46 PM (GMT -6)   
Hopefully you won't need surgery once you start on Humira or Remicade. I will be praying for the new meds to work for you.
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


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 4/17/2009 9:10 PM (GMT -6)   
Keith, that's very interesting news from your GI; definitely keep us posted. Would they really give just a placebo to some participants in their Humira trial? I think that's considered unethical with IBD patients. Meanwhile, I'd like to know what he prescribed for you as anti-spasm med. A couple weeks ago I went thru several days of misery with an ulcerated sigmoid & only realized after I got thru it that my gastro should have RXed an anti-spasmotic for me. The one I used successfully in the past was sublingual Levsin, but when I looked it up recently online, the site said it was apparently discontinued for not being profitable to the pharmaceutical! / Old Hat (30 yrs with left-sided UC; presently recovering from flare in sigmoid colon)

Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 4/17/2009 9:23 PM (GMT -6)   
Just a note about the Humira trials...I am in one, and yes there is a chance you could get the placebo. I would assume they do it the same regardless of location, but with mine, they give you twelve weeks. If you are not responding in 12 weeks, they switch you to the open label study and you definitely get the drug (the double blind study is a year long study, but they won't keep someone in for a year if they are not seeing improvement).

So far in our group, one person was rolled over into the open label study at 12 weeks. Once he started that, he immediately started responding positively to the Humira. Everyone else has responded from the start and been able to continue in the double blind. (there were only 8 of us though when this subject was covered-there are more now-maybe 12 of us?)

I know 12 weeks is a lifetime when you are flaring, but there is an end in sight on it, and after the double blind portion, the open label is apparently for 5 years, so if you choose to stay in it that long, that is 5 years of free meds, if it works for you.

Just wanted to share my experience! I really hope you end up not needing surgery, but am glad to hear you have a plan regardless. I wish you the best whatever path you decide to take.
Laura
 
33 years old, stay at home mom of 2 girls, ages 3.5 and 2.5
 
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Canasa suppositories-1000mg nightly for recent flare


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 4/18/2009 11:54 AM (GMT -6)   
He said he wasn't sure what part of the Humira trial they were currently in but he could get me Humira if I wanted it. I have insurance so I am not concerned about the free meds part of the trial.

Oldhat-- I originally had the sublingal antispasm but it did not work as well the one that I am currently on. When I get home I will post name of the anti-spasm.

The GI has offered Tylenol-3 (with Codine) in the past to help with flares and I choose not to use it because I really just didn't want to take another med that makes me feel groggy and tired. It was a mistake not to take this sooner; this stuff is amazing, I took it for the first time last night, the codine totally relaxed my colon so there was no urgency or pain and I slept great. Most of the time now I have D which would have normally sent me running for the bathroom but now with the Tylenol-3 I can take my time and walk calmly to the bathroom when I want to go. This stuff is better than the anti-spasm med.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 4/20/2009 9:00 PM (GMT -6)   
Old Hat said...
Keith, that's very interesting news from your GI; definitely keep us posted. Would they really give just a placebo to some participants in their Humira trial? I think that's considered unethical with IBD patients. Meanwhile, I'd like to know what he prescribed for you as anti-spasm med. A couple weeks ago I went thru several days of misery with an ulcerated sigmoid & only realized after I got thru it that my gastro should have RXed an anti-spasmotic for me. The one I used successfully in the past was sublingual Levsin, but when I looked it up recently online, the site said it was apparently discontinued for not being profitable to the pharmaceutical! / Old Hat (30 yrs with left-sided UC; presently recovering from flare in sigmoid colon)
 Old Hat,
 
      I have a couple of bottles of the antispasm meds here, one is labled Hyoscyamine .375 mg and the other is labled Hyomax-sr .375 mg. 
 
--Keith
 
DX'd with Pan-Colitis June 2005
Current Status: Flaring
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 4/20/2009 9:13 PM (GMT -6)   
Thanks very much, Keith, for this info. The former was what I used successfully in the past. But glad to read after your GI visit that you got relief from Tylenol/codeine. For sure it was the codeine that made a big difference. I've heard good things about it from patients with conditions other than IBD. / Old Hat (30 yrs with left-sided UC ... [etc.])
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