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Pondering Remicade or Humiera

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Ulcerative Colitis
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Posted 2/21/2008 2:19 PM (GMT 0)

Hi Everyone,

After 4 years, I am finally looking for help from others.  I've been going this long trip alone.  My Husband is a blessing as he is very understanding of my plight.  My UC has never been in remission longer than 2 months.  I have been on and off of prednisone for 4 years.  Its a quick fix for me but has not long term help as every time I taper off, it takes about 2 weeks before the next flare starts again.  I've also been on Asacal, Lialda, Pentasa, Canassa, Rowasa, and 6-MP.  I am currently on Lialda but haven't been in remission at any time.  My last drug jump was 6-MP, which was a disaster as I ended up in the hospital with Pancreatitis, and anemia.  That was just a short 5 months ago.  Heavy doses of predinose followed and I taper off as of January 23, 2005, only to see the ugly UC flare return two weeks later.

Today, I have to contact my GI to get another regiment of something to stop the flare. He will probably go the Prednisone route again, and have me taper over 6 weeks.  That's just a short term fix in my opinion because I will see a flare again in 8 weeks.  We have discussed Remicade and Humiera as options in the past, but in the GI's opinion, my UC wasn't severe, just cronic so they would be last resort options.  I'm not sure if I'm at the last resort options yet, but my quality of life really sucks. (My Husband must be frustrated by this point as I just don't feel well most of the time, so much for being newlywed's).

I would sure like to enjoy a night out without multiple trips to the restroom and rushing home to get to the restroom without incident. 

does anyoune out there have any thoughts on this?

Thanks for the insight...

RD0906

Posted 2/21/2008 2:34 PM (GMT 0)
Sounds like you are prednisone dependent. Remicade was the only medication that enabled me to get off prednisone. Some of the people on this board have started taking Humira, but it's not officially approved for UC yet so your insurance may not approve it. They are both extremely expensive. My insurance approved both but I'm going to stay with the Remicade until it stops working and then try Humira.

Posted 2/21/2008 2:36 PM (GMT 0)
Hi and welcome to the forum! And yes, I can tell you that Remi was heaven sent for me. I was so sick and had no quality of life. I'm now leading a full and active life, and have been on the Remi for 2 1/2 years with no side effects. But that's my story; others haven't had such good luck with it. As with all meds and diet, it depends on the individual and how they will react. Hope this helps! Again, welcome....glad you joined us.
Posted 2/21/2008 2:40 PM (GMT 0)
You are prednisone dependent and your goal should be to get off of it for good. The long term side effects of being on this drug far outweigh the short term benefit. I would encourage you to have a frank discussion with your GI about this particular drug, it's side effects, and how long he intends for you to keep cycling on and off of it. Four years is way too long.

Sue
Posted 2/21/2008 3:01 PM (GMT 0)

RD0906
New Member

Hi RD096,

I really feel for you, especially since I struggled a bit with UC when I was engaged.  Remicade was the trick that put me into clinical remission.  4 yrs sounds like WAY too long to be on prednisone.  I did prednisone for 2.5 yrs and already have bone density problems to most likely attribute to it.  I highly recommend trying remicade as well as possibly switching your meds, I take colazal in place of asacol.  The combination of colazal & remicade got me off prednisone and 6mp.  I encourage you to get a second opinion if your Dr. doesn't become more proactive about getting you into a long remission.  Best wishes! 

Posted 2/21/2008 4:06 PM (GMT 0)
My GI and i have already mapped out that Remi is my next option if I can not get thought this taper of prednisone (it is my 4th cycle on pred.) and i have only been diagnosed for a year! So i really think that 4 years on prednisone is way to long. Don't you have horrible side effects? Everytime i'm on it i get the "moon-face", mood swings like crazy, my hair falls out, wright gain and i gain facial hair. The side-effects for me are just not worth it any more. I have read on this forum too however that, like every other med, people react to Remi diffrently and may get really ill from it. But it seems worth a try, and anything is better then prednisone!
I hope that you can figure things out RD096 and that everything starts looking up!
Posted 2/21/2008 4:15 PM (GMT 0)
Sounds like you are steroid dependant.    My last hospitalization was my worse flare ever. I was on high doses of oral steroids,  and then IV steroids and was still continuing to worsen.  They did another colonoscopy and found that my "disease has progressed".  For the first time ever they began to talk surgery.   But as a last effort decided to try Remicade,  I got my first infusion in the hospital,  and was able to go home the next day. I don't think I've had any adverse reactions to it,  however I still get a bit nervous everytime I get one.  But so far, so good.   I would say to give it a try.  You can't go on like this.  There is a quality life to lead out there,  and you need to start being able to lead it!  Good luck!! 
Posted 2/21/2008 11:01 PM (GMT 0)
Like you, I was unable to get off steroids for more than 4 years. I was taking Colazal, Imuran, Entocort, anything else they could think of to throw at it. All it did was cut my bathroom trips from 25 a day to 15. Remicade put me in remission within a month.

I had horrid long-term side effects from the steroids, and I'd recommend you do whatever you have to do to get off of them. Your decision for Remicade or Humira may be influenced by your insurance. Since Humira isn't yet FDA-approved for UC, a lot of policies won't cover it.

Good luck with your decision, and with getting your life back. I'm really glad you found us here at HealingWell; no one should try to go through this alone!
Posted 2/22/2008 10:20 AM (GMT 0)
I agree that you sound steroid dependent and need to figure out how to get off it. If 6-Mp didn't work for you, likely you should consider remicade as next step. don't let your GI keep you on prednisone. NOT SAFE. also, have you tried rectal meds? cortfoam combined with rowasa is really helping me, and I have pancolitis. Not instead of remi, but maybe in addition???? anyway, I agree with others than you need to switch. 2 weeks between flares is a sure sign of prednisone dependency. I have the same problem, and 2 weeks is my point also. it is a bummer. hang in there.
Posted 2/22/2008 1:47 PM (GMT 0)
HI Everyone,

Thanks for the feedback. I contacted my GI yesterday and an associate from the office called me back. she hadn't read my chart and I had to fill her in with the history, very frustrating. She told me that although my GI was in and out of the office yesterday, he didn't have time to get to me so he did a "forward pass" to her. She also mentioned that he wouldn't be back until Monday, when I could contact him again, if I don't improve. I told her I wasn't keen about another prednizone regiment, but she didn't have any other answers because she didn't know my history. So right now, I am doing another prednisone regiment until Monday (which wil end up being longer because I will need to taper off).

I had considered changing GI's to one more local to my area now. Last time I was in the hospital I was advised to wait until I was in remission in order to have a contimum of care. Has anyone changed GI's when they are flaring?
Posted 2/22/2008 4:58 PM (GMT 0)
My son just switched yesterday. The new doctor is going to lengthen his Prednisone taper, and try 6MP. Hopefully, that will work. My son is doing great on the Pred., but I am not advocating that forever. The previous doctor did not have a very pleasing personality, and we had to wait forever, every visit. The new doctor took his time, asked lots of questions, and I am glad we switched.
Posted 2/22/2008 5:04 PM (GMT 0)
I switched during my first flare. I'm so glad i did! I've been with this GI for ten years. I am comfortable with him and completely trust him. Your relationship with your GI is important, If you are not happy keep looking until you find one you feel you can work with.
Posted 2/22/2008 5:10 PM (GMT 0)
Definitely switch GI's if you do not feel like your current GI is part of your "team" in fighting this battle...whether or not you are in the middle of a flare. I changed GI's just because of the stress the other guy put me in....I swear he was the cause of my flare!

Posted 2/23/2008 1:48 PM (GMT 0)
I can't believe that it has taken this long for your doctors to suggest Remicade or Humira...

I have had three GI's since diagnosed with UC in early 2007- I had to change from 1st doc to 2nd because of insurance issues--- second one was horrible- kept me only on Lialda and Rowasa even though I was still bleeding and flaring horribly. He was irritated that I wasn't improving and basically insinuated that I was making up the symptoms.. Yeah, this is true.

Third doc- took the bull by the horns- first saw him in September- got me on prednisone for a short course, and then within a month on Remicade.

The first two infusions did not help so he put me on 6MP and that and the continued infusions of Remi have FINALLY put me in remission.

I am getting my fifth infusion in April. My doc is genuinely happy that I am better- in fact he was ecstatic last time I saw him. He was very concerned that I was going to have to have surgery.

My point: Be more aggressive with your care- change docs if you feel you aren't getting what you need. Don't be afraid of Remi or Humira --- it can work.. Having severe pancolitis for me is much worse than dealing with the side effects of Remi and  6MP.

Good Luck cool

 

Posted 2/23/2008 4:07 PM (GMT 0)
Don't switch GI's when you're in flare? Who told you that, your current GI? The way I see it, if I'm in remission, I don't need to change GI's. If I'm still flaring after your best efforts, then continuity of care is not what I need, because the care I'm getting isn't working, so why continue it?

By all means find a new GI. We have to have someone we can work with and feel confident in. I'd estimate that at least 75% of the people on this board have fired at least one GI.
Posted 2/23/2008 10:55 PM (GMT 0)
I just want to reiterate and agree with the other posts, GET A SECOND OPINION!!  Do not hesitate to visit other GI's and see what they have to say.  This is your body and you need to be proactive about your treatment.  I have had 3 Dr.'s over the course of 10yrs now, the first two did not help me.  My current Dr. had me in remission within a few months and saved me from having to have surgery.  I also have been on remicade for over 3 yrs.  I have no side effects other than getting an extra cold than most people...but that could just be because of the UC.  Its benefits for me, far outweigh any side effects.  I am living a "normal" life with Remicade.  Do not be afraid to try it.  Also, try researching to find a good Dr. - are you in the chron's and unlcerative colitis foundation?  Look it up online, they can be helpful in finding a DR. in your area as well as infor on treatments. 
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