Need help with next step - Remicade, Cimzia, Tysabri, or Clinical Study? (Or something else)

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Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 9/3/2010 5:14 PM (GMT -6)   
So, as mentioned in other post, the Humira isn't working.  (I'm only getting worse...fevers, constant nausea, pain, extreme fatigue, throwing up, horrible bathroom stuff, etc) I'm giving it another few weeks, and then I'm ready to move on.  My doctor started mentioning other options to me and I don't know what to do next.  Opinions/Advice greatly appreciated.
Remicade - to me this seems like the safest, easiest option.  But if Humira didn't work, why would Remicade?  Aren't they in the same category?  The other downside is that I had a dr who put me on it short term years ago so apparently now since I've already been on it in the past I have less of a chance to respond to it now, as well as an increased chance of infusion infection.  My current doc said it's only around a 1 in 3 chance of it working now.  I wish my old GI never put me on it in the past.  Oh well.
Cimzia - I don't really know much about this one at all but again, if Humira didn't work, what's the chance that Cimzia will?  Plus its a monthly injection, so I don't want to wait another few months only to find out that this didnt work either.  I also have been having a hard time giving myself injections, the last 2 times I needed to have my stepdad give me them so even though I thought injections would be easier in my life, maybe infusions would be easier for me.
Tysabri - Not in the same category as Humira so maybe there's a better chance of it working?  But there's the scary thing of increased chance of brain infection (PML) causing death or severe disability where there's no cure, no treatment, and it is irreversible.  I'm sure the chance is small, very tiny, and hey, I was a little scared with Humira and possibilities of cancer, and ya know I could walk out my door and get hit by a car and all...   But at the same time, I seem to be susceptable to rare side affects of Crohns like the nadosim spots and lovely ulcers on my vagina where for 8 days i was told i had freaking herpes by my gyno which seemed pretty impossible giving the timing and it turns out it was just some rare freaking thing from the crohns.  Oversharing, yes, but yeah, so I don't know.  I get rare random things.  The 6mp has a chance to mess up your liver and oh look, I had to go off of it cause it was messing up my liver. The possibility of brain damage sounds freaky.
Clinical Study - it's free, which is always a plus, and the clinical study person claims theres been a lot of success with it, but a clinical study just seems a little scary.  I mean, I understanda all medicine, like Humira, starts off with a clinical study but still....But, I'm so sick right now do I really want to deal with the possibility of getting a placebo in the beginning?  Plus, I have to wait 2 months to even start for the Humira to leave my system.  Plus, what happens if it DOES work on me and then the clinical trial is over and then I think she said you're allowed to get it for another 2 years after that...but what if it never passes for some reason so then I just need to start all over and find another medication.  So what then?
My doc said surgery would be an option after exhausting the medical options.  I say, take my colon and hey, if ya need to, go take my small intestines too (I could have sworn they were the problem but my last colonoscopy in April showed it in the colon).  But I guess I can understand wanting to try to do all the meds before surgery as an option.
Those are what my doctor suggested to me.  I would love some input.  As of now, my mindset would be to try the Remicade but I hate the fact that because I was on it already it lowers the chance of it working...

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 9/3/2010 5:24 PM (GMT -6)   

Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 9/3/2010 6:41 PM (GMT -6)   
I don't remember exactly but I think it was maybe around 5-6 years ago, I know it was in one of my first years of undergrad. My new GI said that back then, there was a school of thought to use Remicade with drugs like 6MP for short term. I dont think I was on it for that long, maybe just a few months. My old GI was very "safe" so I guess he wanted to take me off of it as soon as possible
25 year old female, dHave been on Prednisone, Asacol, Entocort, Remicade, random antibiotics (cipro, flagyl, avalox, etc), and Mercaptopurine, (even the lowest dosage was messing up my liver, argh) in the past.

Currently on Humira but isn't working, trying to figure out what to do next.

Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 9/4/2010 9:50 AM (GMT -6)   
So even if I already tried Remicade in the past, there's still a decent chance it could work again? Because that's what it seemed like to me, that because I was already on it in the past, it greatly lowered my chances of being successful with it now.
25 year old female, diagnosed in Aug '02 after being misdiagnosed with Lyme Disease for a year.

Have been on Prednisone, Asacol, Entocort, Remicade, antibiotics (cipro, flagyl, avalox, etc), and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.

Currently on Humira but isn't working, trying to figure out what to do next.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 9/4/2010 10:11 AM (GMT -6)   
Sara I hate to say this but for some crohns meds it takes six months.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

Regular Member

Date Joined Jul 2009
Total Posts : 417
   Posted 9/4/2010 11:08 AM (GMT -6)   
My sister takes Tysabri for her MS. If i'm remembering correctly, we were really scared about the PML, however I don't think there's been any more since the first couple people. It's done wonders for my sister, and although hers is for a different medical reason, if Remicade doesn't work in the future for me I'm not going to be too scared to try Tysabri. I don't get a lot of serious side effects from meds (unless it's an antibiotic) Maybe see if Remicade will work for you. Good luck and get feeling better.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's December 2009.
Flaring since October 2008 with occasional spikes in symptoms
Possible Rheumatoid Arthritis

Medication: Imuran 75 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine, Calcium w/vit D

Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 9/5/2010 11:45 AM (GMT -6)   
I know some meds can take months, and maybe I am jumping the gun but like I said even when I talked with the Humira rep he admitted most people that it works for start feeling better within the first month or two. I'm not even staying stagnant, I've been getting worse, with the fevers and the bleeding and constant freaking nausea and d and all that fun stuff. I am giving it a few more weeks, especially since we're doing it every week now instead of every other week but I do need to be realistic and start thinking about other options.

I am leaning towards the Remicade right now, I just wonder how low my chances are for it being a success since I was already on it.

Thats nice to know Tysabri has helped your sister, sgirl. I am still a little freaked out...I think I may try that when other options have failed. In the information I was given about Tysabri and doesn't even say that a small amount of people get it, it just says theres no way of knowing who gets it.

Another though that I had was if maybe imuran would work for me? Cause I'm thinking, 6mp, when I was on the higher dose of it, made my Crohns totally manageable. It was only when I had to go on the lower dosages because of the liver stuff that my Crohns was all out of wack. So maybe since Imuran is in the same category as 6mp it could have a chance of working? Or is that like 6mp where it has dangers of doing stuff to your liver?
25 year old female, diagnosed in Aug '02 after being misdiagnosed with Lyme Disease for a year.

Have been on Prednisone, Asacol, Entocort, Remicade, antibiotics (cipro, flagyl, avalox, etc), and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.

Currently on Humira but isn't working, trying to figure out what to do next.

Veteran Member

Date Joined Jun 2010
Total Posts : 1206
   Posted 9/6/2010 9:42 AM (GMT -6)   
I have also gone back on Remicade and had great success. I actually was on and off of it a few times. The key was the pre-medicating in the iV and I had no problems. I was on it when they also just did it short term. So I had one treatment with one doctor, it made me better and they never did another one. Then more than a year later I started flaring again and I was with a different doctor, I had 3 treatments with him. Then was off it again for almost 2 years and my next doctor restarted it and I was on it for 5 years and did great. If I needed to I would try it again and my current doctor said he was not afraid to restart it.

For me Humira never worked. It is weird since Humira and Remicade are the same concept. I was really hopeful for Humira to work since I did so well on Remicade, but Humira was terrible for me. I tried Humira for 9 months because my doctor didn't want to give up, but it didn't work.

But I would definitely talk to your doctor about the pre-meds in the IV if you restart the Remicade, I think for me that was a big part of the success of restarting.
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 20 mg Prednisone, 2g Sulfasalzine, Serovera AMP, Parazyme, D3, B complex vitamin, and multi-mineral. Previously on Remicade, stopped Humira after 9 months, wasn't working.

No surgeries so far.

Regular Member

Date Joined Jan 2010
Total Posts : 265
   Posted 9/8/2010 11:06 AM (GMT -6)   
"I guess you hit a spot that you learn to just tolerate some pain and sickness and realize that you have a chronic disease."
That's a wise statement.
Go for Remi, and get, at least, some relief.

Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 9/11/2010 2:33 PM (GMT -6)   
Yeah, I really thought the Humira would work, but I am the sickest I've been in my life.  I honestly wonder why I'm not in the hospital right now.  My old GI had me in the hospital back in March and I'm way sicker now than where I was at that point.  I dont know, nothing seems to phase this new GI. 
And then the other day I thought maybe, just maybe, it would start to work.  For the first time in weeks, the Humira didn't hurt.  I iced my leg first and it actually helped so so much and I don't know, I thought my luck would turn.  Its frustrating being so darn sick.  So much pain and the constand nausea and exhaustion.
Im the same way with the pain medication, tsito.  There is such a stigma with the pain meds, I would always feel guilty taking one, like I was doing something wrong.  They definitely make the time more tolerable.  The only problem is sometimes I'm so nausous it's hard for me to take it.  But especially when I'm working I need to take it, it's just so hard with the nausea. 
I see my doctor on Friday after one final Humira injection on Wednesday.   I'll probably try the Remicade next, it's just frustrating 'cause apparently I'm going to have to wait a few weeks first for the Humira to get out of my system, plus theres the insurance stuff and all of that so who knows when I'm even going to start?
I like this online community, I really do.  I just wish I could find a support group in person.  I feel really alone.  I don't have a boyfriend or a husband.  My friend are all busy with their own lives and there are really only two who are actually caring about me.  I try to be positive, it's just tough. 

New Member

Date Joined Sep 2010
Total Posts : 1
   Posted 9/16/2010 5:27 PM (GMT -6)   
Sarah, as a new Crohnian since May I think I understand what you're saying. Stigma. Tsitodawg's points are very good, too. I don't know what I'd do without my friends at church, though I haven't been able to attend much lately. Last weekend I went, was very encouraged, but pushing through the pain was really something and I had to wonder whether I was DIScouraging others.

I am a university professor, and folks can probably imagine what it might be like teaching in a high-impact and rigorous graduate program like's a very tightly-knit learning community with people performing at high levels and very accountable to each other. Yet I can't tell very many people what I suffer from. All they know is that I have intestinal problems and kidney stones...finally as I've been able to return to the classroom, a few weeks into the Fall semester, I have engaged in the most difficult battle of my career.

Yet I notice something at work here. As I learn to live with these illnesses and somehow modulate my professional life, my colleagues and students are responding...they see me trying, they notice my pain despite my efforts to mask it. I give up a little on the maintaining-appearances front and my students actually sit up and pay closer attention. They tell me they are concerned. They ask me to take care of myself. Many ask to help in various ways. A few say they are praying. The forest fire brings out seedlings that otherwise would never see the light of day.

May we see these seedlings in our relationships and lives sprout forth in the midst of this...this stuff. Light shines from directions we too often dismiss. Best wishes to Sarah and Dawg and others. I will be following this thread as my GE doc wants me to start Cimzia right away...

Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 9/18/2010 10:59 PM (GMT -6)   
So I thought I was better because Tues-Wed I was feeling better emotionally and was in better spirits and the nausea wasn't as bad as it usually was so I thought perhaps the Humira might be starting to kick in? Of course then Wed night I had a fever so bad that my legs were shivering/shaking so much they were hurting and my nail was blue. And it was difficult taking my temperature because my mouth were shiveringc/chattering so bad I thought I was going to break the thermometer. And Thurs came the fun when I threw up at work. Still when I saw my doc Friday I asked if I should give the Humira more time. I mean, it sucks being so ridiculously sick, but we've waited this long, might as well not give up. But she said since I'm still getting fevers and still having all the symptoms plus the fact that I was on it weekly for a month instead of every other weeek she saw no point in continuing.

So I think I'm going to try to Remicade again. The clinical trial stuff scared me, plus the whole possible placebo thing and all the work like having to give urine samples which I just cant pee on demand, haha. Hopefully all the paperwork/insurance stuff won't take too long. Well hopefully most of all lets hope it will work. It sucks cause my dr is almost an hour drive away so the whole getting an infusion thing is a big inconvenience, especially if they make me have someone else drive me....but if it works that would be amazing. This has been the longest flare up ever. My birthday is at the end of October...getting my health back would make for a good birthday present...Of course a not so great birthday present? The week before my birthday I'm going to be getting a colonoscopy in combination with a capsule endoscopy (never had one of those before, just a regular endoscopy). I'm nervous I'm not going to be able to drink as much stuff as I need for the colonoscopy with my ridiculous nausea, but hopefully all will work out.

My doc gave me zofran for the nausea and it hasn't been working at all and lately it's been worse and I don't know what to do! I drink diet coke sometimes which kinda helps it the teensiest bit but not when its at its worst, which it has been as of late.

The ccfa website doesn't have any support groups for me. They only have groups for if you're a teenager, a woman who's a mother/wife/etc and freaking couples! Who knew I needed a boyfriend just to get support for Crohns? haha. And I don't like the fact that they charge around 60 bucks just to get support. What if I go once and don't like it (well assuming they had a "regular people" support group.) it sucks they make you pay so much. My great aunt goes to support groups through ccfa where she lives and they dont make her pay....The temple that I go to with my mom is a really small community so they don't have anything like support groups. I did start seeing a therapist but I find when it comes to the Crohns stuff (which is really all I have to talk about lately since it is unfortunately the biggest thing in my life right now) she kinda pisses me off. It's almost like she's "mom-ing" me and being too positive like "you're going to get better, yadah yadah" its like yeah, i will, but who knows when? It could be months from now! i've already been like this since march, its a long darn ass time, just agree with me that it sucks!

I'm sure teaching is rough for you ujijin! I'm just a substitute teacher (one of my 4 part time jobs actually, heh) but when I'm as bad as I am now, I can't teach. First it's a lot of moving around from classroom to classroom and if I need to suddenly use the bathroom, I'm screwed since I'm not allowed to leave the kids. Best wishes and good luck to you as well!
25 year old female, diagnosed in Aug '02 after being misdiagnosed with Lyme Disease for a year.

Have been on Prednisone, Asacol, Entocort, Remicade, antibiotics (cipro, flagyl, avalox, etc), and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.

Currently on Humira but isn't working, trying to figure out what to do next.

Regular Member

Date Joined Apr 2006
Total Posts : 449
   Posted 9/19/2010 1:21 AM (GMT -6)   
1. Research has shown that you have a good chance of responding to Cimzia even though you have failed Humira. I agree the shots are tough and it would be at least a month and maybe 2 before it was clear whether it was working.

2. The biggest danger, as I understand it, to re-starting remicade is the risk of a severe reaction because you were sensitized to the med years ago. You might ask your doc about testing you for remicade antibodies but the results are not always real clear so they may not help much.

3. If 6-mp worked for you except for liver problems, why hasn't anyone put you on Imuran combined with Allopurinol??? This combo has been shown to be effective for many people who either cannot reach therapeutic levels on 6-MP or who are having liver toxicity at therapeutic levels of 6-MP. Biggest problem is that you would have to wait several weeks to 4 months to know if it is working. Given how sick you are, that's not good.

4. Have you tried or are you willing to try exclusive enteral nutrition for at least 2 weeks? You don't eat regular food or drink anything except formula and water, maybe a little 7up. You get your nutrition from either OTC products like Boost or Ensure or from prescription formulas.

Many people experience significant relief of their symptoms in as little as 2 weeks. For my son it was 5 days.

It is as likely to put you into remission as prednisone without the side effects and it promotes healing of your gut and improved nutritional status.

5. You can live OK without your colon. But if you have no colon and have lost a good portion of your small intestines you are very likely to develop short bowel syndrome. This is always a danger when you have CD with small intestine involvement who may need surgery to treat blockages, abscesses, etc.

I have a younger sister with severe short bowel syndrome. She is in intestinal failure and is dying. She is only 43. It is very sad and I feel obligated to make sure people know about this danger.

I don't mean to blow this out of proportion. I know there are lots of CDers who have had their colon removed and do just fine. But I think you may want to ask your doc if he has any concern that this might be an issue for you in the future.

6. Might look into LDN and ask your doc about this med. It's on the market to treat other things but is in clinical trials to treat CD.

7. Methotrexate? My son is on this and it is holding him in remission so far. Usually administered by shot once a week but we are doing oral MTX. In your case I am real sure they would want to do shots at first and might be able to switch you to oral if you went into remission. MTX works a little faster than Imuran/Allopurinol combo but not usually much faster.

8. Xifaxan - new antibiotic that is working really well for a lot of folks with CD especially if they have SIBO. Some insurance companies don't want to cover it since it is an off-label use.

I sure hope you find something that works for you real soon.
son now 14 1/2, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease

Post Edited (rlsnights) : 9/19/2010 10:18:17 AM (GMT-6)

Regular Member

Date Joined Feb 2006
Total Posts : 211
   Posted 9/23/2010 9:49 AM (GMT -6)   
rls, I asked about Imuran but the doc didn't seem to think it would work. Ive research enteral nutrition a little bit, but I don't know much about it. The stuff I read on it said it was 200 dollars a week. Or does it mean just going on a liquid diet? I've been thinking about doing that but at the same time I get really nauseous when I'm hungry so sometimes it helps to eat a little something. (but then again, sometimes I throw up instead, heh.)

I know from my last colonoscopy in April my colon was really bad. It was with my old GI though so my new GI wants to do one and see whats going on. I'm having a colonoscopy and a capsule endoscopy on Oct 14th. She wants to know what my small intestines looks like incase I do have to get surgery in the future. I'm nervous 'cause I'm usually bad with the colonoscopy prep as it is, but being as sick as I am now, I feel like I'm going to be even worse and drink even less of the stuff. Hopefully I'll do good enough...

I'm sorry to hear about your sister.

For now surger is still on the backburner but we're thinking about it I guess. I don't really understand the surgery stuff. It seems to me that even if you remove parts of your colon all the stuff can still come back, you're still going to need to find a medication that works, yadah yadah yadah. I don't know. I should really know more about everything. I feel like my doctor explains things to me sometimes and everything just kind of goes over my head. People on this site always seem to know so much. And I try to look things up and research but I still don't really know what's going on with me.

I asked my doc about LDN and she wasn't into the idea at all. I guess some docs aren't. I keep on meaning to ask about methotrexate cause I see it pop up on the forums but haven't ever really heard much about it.

tsito, I never had a bad reaction before on the Remicade. I'm pretty sure I wasn't on it for too long from what I remember. I mean, I was also on it in combo with the 6mp so I don't know it it will be different this time being only on the Rem. How many infusions does it take to start feeling the Remicade? Or is it another one that could take months til you start feeling better? I really hope the Remicade will work for me, I need to be better already, stat!
- 25 year old female, diagnosed in Aug '02 after being misdiagnosed with Lyme Disease for a year.
- Have been on Prednisone, Asacol, Entocort, Remicade, antibiotics (cipro, flagyl, avalox, etc), and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.
- Stopped Humira because it wasn't working, trying to figure out what to do next.

New Member

Date Joined Jan 2012
Total Posts : 1
   Posted 1/21/2012 5:52 AM (GMT -6)   
MMMNAVY said...
Sara I hate to say this but for some crohns meds it takes six months.

I was reading your reply to SaraOnThisSite and it touched me so much that I had to set up a account with "healing," I am members of so many different medical sites and groups I can barely keep track. LOL!
Anyway, I am having a little hard time figuring out what your comment meant. I get most of it, I just got a little confused but that doesn't matter. The reason I was so touched was what you said referring to your mom being a angel. Like I mentioned, it sort of confused me, so I hope I am right about that part.
My name is Heather, I was diagnosed with Crohns disease when I was 7 years old. My mom unfortunately also had Crohns disease, as well as her brother and several other family members with Chrohns too.
She was diagnosed about 6 months after she gave birth to me, at the age of 20. She lost her quality of life very quickly. about 6 or 7 years after she was diagnosed she had to have the first of many surgeries. They removed alot of intestines that was basically all scar tissue. She had to have a colostomy bag, and they permanently stapled her rectum. So, there was no way of it ever being reversed. She did a lot better for about 6 months, and the Crohns began to attack the stoma (part of intestine that was on the outside of her stomach & was covered with the bag).
So, they had to do a revision. Long story short...She had a total of 17 revisions by the time she was 39 years old. I lost my mom due to complications of Crohns.
I lost my mom, my best friend, I lost myself! My dad wasn't in my life, so I lost the only parent I ever had. As much as it killed me to lose her, I was relieved for her to no longer suffer day in and day out. Her life was filled with so much pain and sadness.
So when you said that you have an angel and she is your mom, I began to cry.
I am so sorry for your loss, but she is with you every day.
You made my day, I always find peace in knowing she is my guardian angel. The hardest part is that the past 3 years I have been going through the worst flare up I have ever been through. When I am in the hospital, I still feel lost and so alone without her. I know she is with me, but every time I was admitted to the hospital she would literally stay with me in my room the whole time. We lived three hours North from U-of-M hospital. Even though she had just found the love of her life and was married right b4 I got so sick. But, she stayed by my side! Now, that's a real Angel! I loved your post & I apologize for rambling. I kind of got a little carried away :)
I wish you and your loved ones a happy & healthy New Year. May you have many blessings come your way.
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