HealingWell
Search Close Search
☰

Once Remicaide always?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/10/2013 6:01 PM (GMT 0)
So because of the antibody think my impression is that once you start it, you have to stay on it correct?  How long does it take for you body to build antibodies to it?

How long do people stay on it and have it still work?

Anyone here have muscle/joint problems before starting it and still be ok?

Does anyone really get cancer from it?

I'm so afraid of this drug it's crazy

Is there ANYTHING else other than mesalamines and 6mp/Imuran for maintenance

Posted 3/10/2013 6:09 PM (GMT 0)
Yes you can create antibodies against it. I stayed on it for around 2 years. I had my infusions every 8 weeks. After 1 1/2 years we switched to every 6 weeks because the last 2 weeks I showed symptoms of inflammation which went away as soon as we changed the frequency.

I had muscle/joint pain, especially in my knees. It went away.

I didn't develope cancer.

Just don't read the side effect list it just makes you crazy :)

I think mesalazines and Azathioprine are good maintenance drugs. Take them regulary. It has cost me remission before because I didn't take my pills every day.
Posted 3/10/2013 6:17 PM (GMT 0)
My problem is all mesalamines made me extremely sick and 6mp gave me elevated liver enzymes. GIs try things and have to keep taking me off. I feel like the Remi will be the same if not worse. I already have joint pain that I don't know the cause of. Muscle twitching all the time etc.. So God knows what the Remi will do to me. Also what is after that? Surgery? So depressed
Posted 3/10/2013 6:49 PM (GMT 0)
I was told when I went on Remicade that if it works I will always be on it. It didn't end up working for me so that was the end of it.

My mom is on Remicade to treat her Rheumatoid arthritis. She is on it now indefinitely. She had to go off of it a couple of years ago for 8 months because she had to get chemotherapy for breast cancer. (Who knows where the cancer came from...no family history of it.)Shortly after her chemo was done, she went back on it and luckily had no issues receiving it again. Her RA flared terribly while she was off of it. She has no choice but to take it. It's either that or she's crippled. At least for UC there are other options. Remicade was my last ditch effort before surgery.
Posted 3/10/2013 7:34 PM (GMT 0)
what about methotrexate? could that be an option for you?



q

Posted 3/11/2013 1:34 AM (GMT 0)
Quincy oy that one is pretty scary too. Last resort maybe. So far symptoms are mild if any and that seems so strong for what I have. I really envy those who can take the less serious drugs.
Posted 3/11/2013 2:13 AM (GMT 0)
when i was on it, my GI said she'd like for me to stay on it for a year and if i was in remission after a colonoscopy, she would lessen the dose and eventually stop it if my symptoms didn't return during the taper. the plan would've been for me to stay on 6mp. i haven't heard of any other GI recommend this but she was from another country (ukraine i think) and she said it wasn't typical to stay on biologics if you weren't having symptoms.

this plan never happened because remicade stopped working too quickly- after 5 infusions, i was full on flaring while on 6mp, too. i developed joint pain while on it but didn't have it before that.
Posted 3/11/2013 2:20 AM (GMT 0)
bananagirl are you flaring now? I've been doing paleo/scd and gaps throughout the past 2 years. What are you eating? Are you doing an autoimmune version? Are you on any Rx meds now?
Posted 3/11/2013 3:05 AM (GMT 0)
seasons, yeah, i'm still flaring. i usually go 3-5x a day but it's mostly formed/soft stool. no diarrhea since i had c diff last month. i still get cramping with my bowel movements and i wish that would stop. i definitely think paleo/scd makes a difference because before i started the diet i was in excruciating pain/throwing up at all hours of the day. i started it in august so it's been about 8 months for me. i've heard healing can take years though, but i'm not saying that diet is all i need. i just haven't found the perfect plan for me yet. it takes a lot of experiment i'm finding out.

after my humira stint in january and my vancomycin course last month, i haven't been on prescription meds. i still take my supplements but i rotate them a lot to try and see what combo works best. so far, i really like the probiotic Prescript Assist. it's definitely formed up my stools more than any food/supplement i've tried in over a year.

i did try the autoimmune version for about 2.5 months. i didn't notice any differences when i took things out but i did notice it more when i added them back in. it seems my main foods that bother me are eggs and onions. i've definitely broadened my diet a lot though. here is a list of every food i eat:

meat (every kind and cooked any way)
coconut yogurt
hard cheese
gelatin
bananas
avocados
tomatoes
zucchini
mushrooms
carrots
celery
garlic
dates
grapes
melons
pineapple
almonds
coconut flour
coconut water
coconut oil
coconut aminos
tumeric
dried herbs
raw sauerkraut
lemon
local honey
raisins
berries
olives
tomato sauce
salt

i eat a lot of salt since my blood pressure hangs around 90/48- i'm trying to raise it somehow! i did get it higher at a doctor's appt. last week and it was around 98/54.

my go to meals are always the SCD meatloaf and roasted chicken. i also eat canned tuna a few times a week. i also make sure to have coconut yogurt every day either in a smoothie or in a bowl with fruit and honey.
Posted 3/11/2013 3:10 AM (GMT 0)
My side effect of Remicade is formed stools, less frequency, no blood. Oh wait those are good things :). Ive had no troubles, going every 6 weeks.
Posted 3/11/2013 3:27 AM (GMT 0)
My doc says she has had no patients develop cancers. At worst it stops working. Real experience.
Posted 3/11/2013 10:20 AM (GMT 0)
I've been on Remicade for over 4.5 years--still working. I have had a few reactions (migraine, joint pain, chest tightness) during/right after the infusion, but they rarely occur since I've slowed down the infusion rate and take Zyrtec a week before & after the infusion.

I don't think you can predict if/when you'll develop antibodies. GIs have different thoughts about how long to stay on Remicade. My previous GI said that I would have to be on it forever; my current GI says that I can go off once I've been in a solid remission for about 5 years and my scope is completely clear. Honestly, I'm not sure I want to go off of it--I'm too scared that I'll flare!

There have only been a few people who have developed cancer from Remicade, and they were all adolescent males who were taking Remicade and 6MP at the same time.
Posted 3/11/2013 10:56 PM (GMT 0)
I have been told that you could develop antibodies if you stop. I've been on it since June 2010.

I have had no cancer. I am not 100% symptom free, but I am close after following the Paleo diet.

I used to get flu like symptoms the day after the infusion and it would last about a week. Now I don't seem to get that any more.

I don't have any joint pain before or after remicade.

I wished I discovered Paleo before turning to remicade, but I was in very bad shape when I made the decision to start remicade. If I get symptom free for a year I will look in to stopping Remicade, but I am not there yet.

Post Edited (robray) : 3/11/2013 5:01:43 PM (GMT-6)

✚ New Topic ✚ Reply