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Remicade vs. Humira vs. Cimzia

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Ulcerative Colitis
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Posted 5/29/2009 6:43 PM (GMT 0)
Well, we're running out of options for me. I've got pancolitis, and Asacol/rowasa did nothing, Imuran gave me pancreatitis, and I just had an adverse reaction to my second Remicade infusion two days ago. Any of you negatively react to Remi but do okay on Humira or even Cimzia? Anyone out there participant in any clinical trials? Any advice here would be well appreciated.
Posted 5/29/2009 6:49 PM (GMT 0)
I have only taken Humira (I am in a trial-the first year was a double blind, now it is open label), but it has been working really well for me. I have had minimal side effects (fatigue is my biggest complaint), and aside from one recent bump-same time of year that I seem to have bumps when it comes to my UC-it has worked like a dream for me. And that recent flare (which was minor-going 5ish times per day, give or take-normal for me on the Humira has been 1-2 times a day with no blood, and that was normal for me before diagnosis. Before the Humira, it was 15-20 times a day, mostly blood) was a lot easier to get under control, so it didn't last too long.

I'll be praying you find something that works for you.

I have heard (mostly from people with crohns) that some people who react badly to remi don't to humira, so I definitely think it is worth a try. I don't know anything about Cimzia.

Good luck, and keep us posted!
Posted 5/30/2009 1:00 AM (GMT 0)
Thanks for the prayers and advice. It's been a stresful chain of events, and I just want to find something that works for me. I was diagnoses only in August 08, so in less than a year I've gone through this headache.

Is there a reason you started with Humira? As I understand, of the 3 Remicade is the only one FDA approved for UC, and that's what they usually start with....just curious.
Posted 5/30/2009 1:22 AM (GMT 0)
Liz, I know it seems pretty drastic, but you may want to research the jpouch surgery. I'm doing okay for the most part on Remicade but I'm not in as complete a remission as I'd like -- symptoms start coming back about five weeks after each infusion and I'm already on the six week schedule, don't want to go more often.

From what I can see, most people who have the surgery only regret not having done it sooner. I am more likely than not going to have the surgery at some point, just can't swing the recovery time right now financially, so the Remicade is giving me some breathing room.

But if you're running out of medicinal options look into the surgery. Your local hospital may have ostomy support groups so you can talk to people who have gone through it and hear what their experience has been.


Hang in there,

Meesh
Posted 5/30/2009 2:01 AM (GMT 0)
Should use the hydrocortisone enemas.


I am in a trial for golimumab. 6 months in.
Posted 5/30/2009 2:51 AM (GMT 0)
Double frequency Humira is making a difference for me for now and Remicade was not working (it never did last but I developed reactions before I could ever try double dose). 
Posted 5/30/2009 3:45 AM (GMT 0)
Well, I guess I'll be going in next week to see the doctor and see what suggestions he has. I trust him, he's a fairly well known, good doctor at MGH, so whatever he suggests, whether it is surgery or not I will probably give a try.

After I had gotten off of the Prednisone 2-3 months ago, I said I would never go back, and lo and behold yesterday I went back on them. I couldn't take it anymore. I know it's not a permanent solution, but they kick in SO quickly for me that at least it will give me some relief in the meantime.
Posted 5/30/2009 6:29 AM (GMT 0)
I had a horrible reaction to Remicade, and was put on Humira right after Remicade wasn't working for me. I have been on Humira for just over 2 years and I am doing GREAT with this medicine. I know nothing about the other medicine you are talking about but 'course I will totally support and brag about Humira. Hope all goes well.
Posted 5/30/2009 10:30 AM (GMT 0)
A little help?

Wow, I guess Im in the wrong area. Im sorry, I never had any idea any of this could be so bad.
Well maybe not. Im sorry to bother anyone with far worse probs, But I think Im heading down that road. Im a male, Im 29. But things arent looking good, a few years ago, I was in ultra healthy shape.

I have auto immune stuff, ankylosing spondylitis symptoms, and bad fibromalgia. With some un declared UC. Bad craps, ill fealing, bad, scary IBS. And a damaged fealing. I had a recent bought that scared the hell out of me, I thought I was starting on something that was ultra serious and not going to end. Im still having some weird, damaged fealings down in my guts. Two weeks, I lost vital weight Im liekly not to seee back. Im weeker. This sucks.

Ive been freaked. And my time is limited, Im a little better for the minuete, I didnt think that was going to happen. I cut out wheat and milk, and started taking VSL#3 and it stoped for now. I still have some cramps in the morning. But those last two weeks were scary. Pain, sickenss, cramps all day. I was scared to die. But at the same time I though It might not be such a bad thing.

My GI and Rhuem suck. I have an apointment soon. I think a colinoscpoe is coming. I recently had an upper scope, and I was shocked that they saw nothing. And no celiac, I do have a mild posotive on a S. cerevisia iga though.

Ive got kids, with no mother. My mom and sometimes girlfriend help some. But its not the same. There still young, I cant go yet. No one else in my family is going to protect of help my kids have a decent life. And there still all under ten.

Is this realy all or part immune caused? Do the immuno supppresants not totaly work? Is it worth it I was offered by my rhumitoid to go on methextate of whatever its called for irits, and to see if it helps everything else. Do you guys think I should? Im afraid of the bad effects, liver damage, cancer, others. What are you opinios on that, if there was anyone who would know it you guys posting here.

All of my probs are slowly getting wrose. Im 100% for sure on that.

Post Edited (houseguest) : 5/30/2009 4:34:30 AM (GMT-6)

Posted 6/1/2009 3:21 AM (GMT 0)
Liz3-Sorry for not getting back to this sooner-my husband threw me a birthday party Saturday and I haven't been online!

I was hospitalized in late March 2008, and was in the middle of switching GI docs at that time. While I was in the hospital, my now GI doc came to visit me, and he talked with me at length about the Humira trial they were running at his office. At that time, I think I was the third one in the trial (in my group)-apparently the entrance requirements were not easy for all patients to meet. Since I met them, they felt this would be a great opportunity for them to add another trial patient, and a chance for me to get to remission. The doc I had seen before him was completely incompetent, and their office had a policy that once you started seeing one of their docs, you could not switch to anyone else in the practice. Anyway, that is how I ended up doing the Humira trial rather than doing remi first-my original GI didn't even suggest those types of options-she told me my case my mild. I guess she was wrong!

Really, the Humira has been such a blessing for me. After the first dose (which I didn't actually know was the med-the first year was double blind), I was down to going once a day, no blood at all.

Houseguest-I am sorry you are dealing with so much. My heart goes out to you. I completely understand the fear about the risks involved. I have little ones too, and while I am not a single parent, I can relate the fear of not being there for them. I honestly don't know the risks of methotrexate, but I do know that Humira comes with a fair amount of these types of risks as well, but I really feel that the risks are worth it. The drug has allowed me to live a normal life again-little more than a year ago, I couldn't even care for my own kids. The best advice I could give would be to get some additional medical opinions. And if your doctors aren't explaining things to you in a way that satisfies you, I would advise seeking out new doctors. I did, and I am very glad I did. I truly hope you can find some answers and some peace.
Posted 6/2/2009 8:18 AM (GMT 0)
Supa, thank you so much for the wisdom and kind words. I get ignored by everyone, everywhere. This stuff is making things like time with my kids, and findinga job that will putup with me very difficult. I wasnt quite as sick when I was offered the med a few months ago.

Now things are looking different. I also just wish I knew exactly what was wrong with me, and that the med wouldnt make anything worse. I definalty need to stay alive for a while. I know whats causing the IBS is only going to get worse, and its scary now.

Thanks again.
Posted 6/2/2009 8:05 PM (GMT 0)
ive been on humira for awhile mayby almost a year i think the remicade i slowly quiet responding to and finally had a bad reaction to it becouse i guess i built up a autobody to it. I wouldnt say im in remission becouse i still get alot of discomfort and occasionally blood but i know the humira is doing something becouse after a week or almost 2 i can count the days before my next dose of humira as i get alot more discomfort and pain and the frequency of bathroom trips is more. Remicade when i first started it was a blessing but it didnt last long mayby a year. I know the job thing is hard right now ( at least if you are in the states it is ) but dont feel alone becouse its everywhere.  i constantly think of surgery but for me the j pouch thingy wouldnt work becouse of how the uc affects me. I always hold out on the hope that eventually they will find a way to better relieve or to cure UC and the way i figure it is if i dont have a colon they cant cure me or help me so i hold onto that thought. I think stress at least for me has alot to do with UC as well as diet. Im a municipal worker so politics has alot to do with my job and at the moment they are considering getting rid of my whole department becouse revanue is so low from taxes and such among other things so i understand about the stress with jobs . good luck and dont worry everything happens for a reason even if your not sure what that reason is at the time.
Posted 6/2/2009 11:01 PM (GMT 0)

Glad I read your post.  I was just Dx with pancolitis 5/28/09 after having left sided colitis since 6/2007.  This UC totally spread with all my current meds:   Liada 4 pills daily, rowasa, probiotics, on again off again predizone, etc, etc and etc.  Now I'm too considering Remicade or Humira?  Totally scared of Remicade, because of the mouse protein (why mouse)?  I would like to try Humira with the human protein (..smart thinking scientists), however I know the FDA has not yet approved it for Dx of UC just crohns disease.  I will see the GI next week, currently on 30mg of predizone will taper off this week.  The predizone sort of helps, but I have D about 3 times daily with now very minimal blood, thank God.  Do most GI start on Remicade and do the wait and see (for any reaction, good and bad) before they go ahead and use the better med.?  My insurance requires a predetermination before treatment, so I would like the GI to do a narrative to support the treatment of Humira, wonder if that would work?  Or see if I could get on a Humira trail, and hopefully not be on the placebo, or how to make sure that I'm given the medication?

Anyway, so much to think about.  My concern is that I'm loosing much blood without the predizone, and with growing kids now in teens I need to be there.  I get very tired, fast, hard to do the simple things that would take me minimal time.  Also has Cimzia been FDA approved for UC?

Any input would be greatly appreciated. 

signed,

Brighterdays rolleyes

Posted 6/3/2009 1:06 AM (GMT 0)
I could not get coverage for Humira since it is not approved for UC. But they pay for the Remicade. Silly. Hopefully it will be approved for UC soon.
Posted 6/3/2009 1:47 AM (GMT 0)
Thanks for responding.  I have the feeling the GI will start me on Remicade.  I just want relief, for now and then when I'm stronger start taking charge of my health as well.  You said you sought out a naturopathic doctor, I may do this as well.  I need to find the unknowen, what else may I be allergic to, what is the cause of this for me.  I heard of a sort-of maintenance dose of Remicade---like episodically (like stopping and starting) and then use a maintenance med like methotrexate)....so you do not build anitibodies to it.  Have you been advised of this as well?   

 

_______________________________

48 yr old female (married).  First diagnosed with proctitis in 2005, then left-sided UC in 2006, pancolitis in 5/2009.  Aasocol, now Lialda, prednisone & Rowasa for flares.  Probiotics (cultureal), 6-MP (allergic), calcium (bad flare--bleeding), multi-vitamin, fish-oil (bad flare).

Now will be starting Remicade 6/2009.

 

 

Posted 6/3/2009 2:19 AM (GMT 0)
This post is going astray....but I hope to answer the first person a bit. My daughter is in a clinical trial for Remicade for children. It is approved for UC for adults, but you cannot get it paid by insurance for kids---small problem for 12k per infusion. The reason she tried this drug first, was that the mouse protein in Remicade can cause problems in some; if it does, the chances of Humera working are slim. If Remi. works, and then you gradually can build an immunity to the drug's mouse proteins, or have a reaction to them, THEN you have a CHANCE that the Humera will work too. All of this is to stall, to buy time--- for either drug research, natural pathways, or surgery to become a fitting replacement. Sorry, don't know anything about Cimzia.

Houseguest: Please keep reading the previous posts, and you will learn a lot about this disease and it's treatments and outcomes. Might also want to try the Crohns and Colitis Foundations site, once you are diagnosed. Take care.
Posted 6/3/2009 3:43 AM (GMT 0)
its now 13:40 and i have been "holding it in" since about 11:00. I have a j-pouch and i have to hold it in to increase the size and capacity of the pouch.

i tried remicade, humir and abadacept as well as the non infusion drugs steroids, imuran etc but nothing really worked and i finally got my head around the surgery idea and had part 1 in Nov 2008 and part 2 in Mar this year. I'm a single parent and i was afraid that my kids would grow up and i would lose that precious time with them so i took the plunge. compared to wot went before, its been plain sailing. i have more energy and my iron levels are returning to normal. i feel good.

if you feel you have tried all the medical options, don't be afraid of the surgical ones. i like the many others ask myself why i didn't do it earlier.

Posted 6/4/2009 3:11 AM (GMT 0)
I am on a Humira trial right now. I have never taken Remicade but I did get pancrea*** from Imuran. I feel much better on Humira. No flares in 5 months!!! I have been having some hormonal changes though. I have missed my period and had to take a blood test just to make sure I am not pregnant. I have also had swollen  and painfull breasts. I think that is easier to handle than a flare though. i went for my first long drive with out freaking about haveiong all bathrooms plotted on a map!!!

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