Remicade vs other treatments

[Fifi1983]

Hello my fellow IBD sufferers,
I was recently diagnosed with Crohns and am trying to research all the options I have for treatments. My Dr told me to look into remicade and I am just wondering is this the best option? How are other peoples experience on this medication? TIA

 

[ronroush7]

Everyone is different . I was on it and took myself off which led to a flare. My doctor put me back on it and by that time I had built up an allergic reaction.

 

[my little penguin]

My son was on remicade at age 8
It was his miracle drug
Unfortunately after 8 months he had an mild allergic reaction to it
He is however a very allergic kid and hasreacted to food drugs pollen etc so it was expected
He was then switched to humira in 2012 and has been on that plus methotrexate without issues since


Good luck

Tagging
Clash
Maya142
Mehita
Jmrogers
Farmwife
Crohnsinct
Tesscom

All success stories with remicade

 

[Fifi1983]

My son was on remicade at age 8
It was his miracle drug
Unfortunately after 8 months he had an mild allergic reaction to it
He is however a very allergic kid and hasreacted to food drugs pollen etc so it
was expected
He was then switched to humira in 2012 and has been on that plus methotrexate without issues since


Good luck

Tagging
Clash
Maya142
Mehita
Jmrogers
Farmwife
Crohnsinct
Tesscom

All success stories with remicade

Thank you so much my little penguin!!!

 

[my little penguin]

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

This goes through some of the risk benefits of meds

 

[Maya142]

Both my girls have been on Remicade. They both did really well on it. No increase in infections or anything like that. No side effects at all, besides some tiredness the day of the infusion (and honestly, they were pre-medicated with Benadryl, so that might have caused the tiredness).

My younger daughter's scopes looked nearly perfect 8 months after starting Remicade. It can really work very well.

Good luck!

 

[lenny]

My son, 19, has been on it since April of 2015. He's doing well, so far. Keeping weight on, has more energy, normal b.m.s.

He did get whooping cough last year, even though he had been vaccinated, and it was a rough couple of weeks. He just couldn't catch his breath. Very frightening!

Other than that, no problems.

 

[Julia S]

Hi there. I think whether to start with Remicade or not depends on how serious your condition is now and your expected prognosis.

Biologics are the most potent drugs available as of now. I'm newly diagnosed too and my doctor, for instance, said he wants to start me on AZA as monotherapy and keep Remicade and biologics in general as a card up our sleeves in case we need it further down the line (assuming the AZA will work to keep me in remission, of course)

I found this 2016 document with the European guidelines for treating Crohns and they go through everything including what cases they believe benefit most from a top-down approach. Hope it helps!

http://ecco-jcc.oxfordjournals.org/content/eccojc/early/2016/09/21/ecco-jcc.jjw168.full.pdf

 

[Julia S]

*Forgot to mention: the reason why my doctor is against starting Remicade or another anti-TNF right away in a case like mine (which is considered mild) is that many people (although not everyone) develop antibodies to Remicade over time. It can be as fast a a few months to a few years. And once you develop antibiodies to one anti-TNF, you are more likely to also quickly develop antibodies to another anti-TNF. Using an anti-TNF too soon in the game might mean you burn the option of using it later when you need it more.

 

[my little penguin]

We haven't had that exp
Ds has been on humira for close to 5 years
After reaction mg to remicade
Saving meds for later but letting your gut have damage is the bottom up approach
We did this we ds and he had pain and damage for a year until we finally decided to try remicade
Never realized how sick he was until he started on remicade and what a difference

 

[Julia S]

I suppose Crohns is so difficult because everyone is different* . There are people on this forum that have been years on AZA or 6mp without issues or secret damage happening. I think ultimately, in my personal opinion, what anyone with Crohns should do is:

1. Find a GI that you like and trust. This disease is too serious to keep a GI that you feel meh about around.
2. Discuss your particular case/prognosis with your GI. Crohns is very different in different people.
3. With the information from 2, discuss treatment options. I personally feel that the best doctors are the ones that explain all your options to you, makes a recommendation, but ultimately is willing to do what *you* think is best for you.
4. Make a treatment plan with your GI.
5. Follow up! I do believe that even if you start at the middle of the treatment pyramid (ie with AZA or 6mp), if you are closely monitored by scopes (not just blood work!) on a regular basis, you will be able to quickly up your treatment if your current one is not leading to mucosal healing. The goal is to reach endoscopic remission, of course.

Anyway, I'm by *no means* suggesting that starting with Remicade is the wrong decision. I'm sorry if it came off like that. I think it's ultimately a personal decision that needs to be made with risks/benefits in mind. I hope the links posted above helped you understand a little bit more about the risk/benefits of each treatment option and disease progression.

Good luck and keep us posted!

*My personal, speculative opinion is that we'll some day discover that what we call Crohns today is more than one condition. Likewise, I feel that treatment/follow-up strategies should be as personalised as possible since this disease is so different for different people.

 

[Clash]

Actually, the goal (no matter the med) should be clinical, endoscopic and histological remission with full mucosal healing. Studies have shown that this type of deep, stable remission leads to longer remission times and less risk of permanent damage that requires surgery.

I agree that regular testing should be the norm regardless of your treatment plan. My son has been asymptomatic for years yet his CD has remained active through numerous meds and surgery. So testing can catch the issues even when the disease is trying to be insidiously silent.

I would have a frank discussion with your GI about the location and severity of your disease. Top down approach is quite common these days. It's probably even more common among pediatric patients since CD tends to be more aggresive and progressive than in adult onset and controlling the inflammation during those adolescent years is vitally important to ensure growth is achieved. This is why many of the parents posting have experience with top down approach.

Whatever treatment plan you choose I hope you find remission quickly and long may it continue!

 

[Fifi1983]

Thanks everyone for the responses and information.

I still have to go for a MRI to see how severe my case is. I started having symptoms while pregnant and they just contributed everything to hormones. It took 8 monthes to properly diagnose me. I now have a 4 month old and I am going though the hardest time in my life.

I just had surgery because I have 3 fissures that are so painful I sob everytime I use the washroom and I have sores all in my mouth. I cannot wait to start any treatment right about now.

 

[JaimeM]

Remicade has been a lifesaver for me! I was on it for 6 years then switched to cimzia when I had my son (didn't think I could drive over an hour to my infusion center) Anyway cimzia didn't work and I got really sick. We switched back to remicade and added azathioprine.. Had an MRE the other day and it showed my crohns had drastically improved.

 

[ronroush7]

Remicade has been a lifesaver for me! I was on it for 6 years then switched to cimzia when I had my son (didn't think I could drive over an hour to my infusion center) Anyway cimzia didn't work and I got really sick. We switched back to remicade and added azathioprine.. Had an MRE the other day and it showed my crohns had drastically improved.

Great news!

 

[Fifi1983]

Remicade has been a lifesaver for me! I was on it for 6 years then switched to cimzia when I had my son (didn't think I could drive over an hour to my infusion center) Anyway cimzia didn't work and I got really sick. We switched back to remicade and added azathioprine.. Had an MRE the other day and it showed my crohns had drastically improved.

Awesome to hear!!!

 

[Madhu]

Remicade saved our lives. Good luck!

 

[Jmrogers4]

After 4 years of what we thought was doing pretty well on other drugs (imuran, LDN, methotrexate) an MRE showed massive inflammation present in the small intestine my son was put on remicade in January of 2014 and it has made a world of difference. He is and has been in true remission since then. The growth and development delays are gone. He went from just barely over 5' to just over 6', from virtually no puberty to a young man in about a year. He is living a normal 17 year old boy life, loving his senior year of high school. Eats whatever he wants for the most part, is busy as senior class vice president, plays sports, works part time. I don't think this would have been possible for him without the remicade.
My husband on the other hand has been in remission for 13-14 years on Imuran, started on the sulfates and once he was put on Imuran has not needed further meds. This disease is so individual you have to find what works for you.

 

[Cwinnin]

hello,

Wow things have changed since I was diagnosed. I wasn't put on a biologic until 3 years after I was diagnosed. Might've been because I was only 12 at diagnoses haha. Anywho, I was on remicade. It worked well for me, the only warning is I had anaphylaxis after a few months of infusions from it. That's when I switched to humira, which I never had a reaction to. Though that sort of just stopped working. If I were you I'd ask about humira first. It's shots you give yourself, usually one every other week. While remicade is a four hour hospital infusion once a month, which is not the most exciting or fun time of your life.