HealingWell
Search Close Search
☰

Remicade?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/11/2015 11:45 PM (GMT 0)
Hi everyone,
I am going to start remicade in a week an i am so nervous , as I am with any other drug , but im just to the point i will take anything tired of the pain everyday! Can anyone tell me any good success storys with remicade thanks!
Posted 9/11/2015 11:58 PM (GMT 0)
Remicade literally saved my life. Before it, I was constantly on prednisone in spite of high doses of mesalamine and imuran together. Even with the pred, I still got an abscess that turned into a fistula. Then the imuran gave me pancreatitis so bad for 6 months that I had to be put on a feeding tube.

Remicade almost immediately got me into remission. I have only needed pred twice since I went on it, and that was when I also got c. diff. and it made me flare (so totally not Remicade's fault at all). I've been on it for 3 1/2 years and it is the best drug I could take for Crohn's.

I might feel a little crummy the day or two after the infusion, but not bad for a sister drug to chemo, right? I get sick a bit easier, but any Crohn's medication will do that to you. Bring a book or a laptop or something, since it usually takes a few hours.

Seriously, though, Remi literally saved my life. Before it, I was hospitalized 13 times in an 8 month period. Now I've gone this entire year without being admitted once! I did Remi all through my first pregnancy and am still doing it through this next baby, too. My daughter is completely healthy and fine.

It's normal to be nervous, but I have had amazing success with it!
Posted 9/12/2015 12:04 AM (GMT 0)
Thank you nice to hear! So have u been in remission since I tried that really light drug delzicol and it didn't do a thing an tried 6mp it make me so sick ! So now he wants me to try remicade I hope I get some sign of relief I'm tired having pain every single day its like u DONT get the quality of life an did u ever get back to a healthy weight?
Posted 9/16/2015 3:01 AM (GMT 0)
remicade is the best thing ever, i took it a week after being diagnosed (i was in the hospital for a week and was super super weak and tired) and it was a night and day difference! i just had my fiurth infusion today! i lloovvee it!
Posted 9/16/2015 11:43 PM (GMT 0)
Are you in remission and back to normal? And did u get back to healthy weight?
Posted 9/17/2015 2:20 PM (GMT 0)
just a little extra input.. i dont know if this is exactly a reaction to the remicade itself or the iv steroid, but the past two days ive been experiencing major muscle pain in my arms and shoulders, i cant move them very well at all, and if i move my right arm too much, it spasms a little bit. so just a warning, i dont think im taking remicade again.
Posted 9/17/2015 8:17 PM (GMT 0)
So I am one of the Crohnnies who is overweight, but for a combination of reasons. I was on 40 mg of prednisone for 10 months, which started all of it. I lost most of it, but then got really sick with pancreatitis and was on a feeding tube. After that, I kept getting IV nutrition throughout my pregnancy. This was all back-to-back over the course of 3 years and it completely killed my metabolism. Once I got better and started eating normally, I put on a TON of weight in addition to prednisone and pregnancy weight. Even though now I walk 5 miles every morning, I still struggle with losing any weight.
Posted 9/18/2015 12:47 AM (GMT 0)
Well in glad your better now u deserve to feel good u been threw a lot an I keep having severe pain an throw in up rushing to bathroom from class I just hope remicade works for me I'm so tired of the pain an not being able to enjoy anything
Posted 9/18/2015 12:48 AM (GMT 0)
I really think it will help you to start Remicade. Is your first infusion tomorrow (Friday)?
Posted 9/18/2015 1:04 AM (GMT 0)
No there it should be sometime next week , there waiting on a response for my insurance I have good insurance they said they don't think It will b a problem but there taking forever! I just get very depressed BC I wonder will I ever like ever feel normal again!?
Posted 9/18/2015 2:33 AM (GMT 0)
Remicade will get the job done, if anything will!
Do you know what your infusion center is like?
Sometimes they put you in a room with someone else and sometimes they put everybody all piled up in one room with no privacy.
Some places let you bring someone with you and others don't. My mom used to come with me, but she would talk to everybody and keep me awake. I would get so tired!
But when I went by myself, I always knocked out and had the best nap, especially if I get my infusion in the afternoon.
I always felt really thirsty after the infusion too no matter how much water I drank, and I also had a headache, but it was all worth it. I truly did not realize how sick I was until I had remicade and then began to feel amazing!
I hope it becomes your miracle drug too.
Posted 9/18/2015 2:49 AM (GMT 0)
Thank you gypsyfp and I go to a Nortons. They have private rooms ,
Posted 9/18/2015 3:46 AM (GMT 0)
Remicade has been pretty good for me. I also have to take Methotrexate with it. But I had failed several medications before going to Remicade, and it's the first one where I've felt a lot better on.
Posted 9/18/2015 3:55 PM (GMT 0)
Thank you all hopefully it will be the drug for me I just want live life again and finish school an stuff
Posted 9/18/2015 10:27 PM (GMT 0)
& do u all know how long u can be on remicade or how long it can make u be in remission if it works
Posted 9/18/2015 10:35 PM (GMT 0)
You'll be on remicade for a very longgggggggggggggggggggggggggggg time.
I'm in my 5th year of it.
I'll only go off of it if I have a very severe allergic reaction.
That being said, I don't think I'm in a remissive state.
Everything else is fine, but I can't get rid of my fistula.
Posted 9/19/2015 1:52 AM (GMT 0)
That's another thing I worry about I want to get better but being on biologics long and not knowing the long term side effects an stuff are scary to me
Posted 9/19/2015 3:18 AM (GMT 0)
& gypsyfp you said your not in remission ?
Posted 9/19/2015 1:36 PM (GMT 0)
@bstiggy, honestly there really aren't tons of people getting tons of long-term side effects. There are a few that can occur, but the chance of that happening is relatively slim. There are some people on this forum who have been on Remicade since it first came out over 10 years ago who are still doing great with it. If you get into remission, you do NOT want to stop because you are feeling better because you will flare right back. That's why these are called "maintenance" medications.
Posted 9/19/2015 4:30 PM (GMT 0)
Thanks scifigal2k my insurance just approved it now I'm just waiting on my G.I I really hope an pray god is on my side an this works been fighting a flare for whole year an only 93 pounds it sucks
Posted 9/19/2015 5:50 PM (GMT 0)
And sometimes the way the side effects are worded can sound scary. For example (and I am kind of making these up), if a medication triples your risk of cancer, it sounds scary. But if the normal risk of cancer is 2%, then your risk is now only 6%, which is still pretty low.
Posted 9/19/2015 6:05 PM (GMT 0)
Thanks , & what do u think they will do when I get my wisdom teeth pulled because I had cdiff once before an I think dentist give u antibiotics I do not want to take them !
Posted 9/19/2015 8:05 PM (GMT 0)
Take a probiotic. I highly recommend Florastor. I've had c. diff. 8 times and had to have a fecal matter transplant because it became resistant to all antibiotics. I now take one Florastor a day all of the time as maintenance, and if I get on antibiotics (which happens with my fistula and just being immunosuppressed), I take 4 Florastor a day. It is rather expensive, but it is one of the most effective ones out there. The reason it works so well against c. diff. is because it is yeast-based (which is a fungus) as opposed to being bacteria-based, so antibiotics don't kill it. With other probiotics, you have to space them 2 hours apart from when you take the antibiotic, and even then the antibiotic will kill that good stuff. Florastor can just be taken whenever you take the antibiotic. It kind of gives me a stomachache to take all 4 at once, so I spread them throughout the day.
Posted 9/19/2015 8:27 PM (GMT 0)
Thanks , and is there any side effects of fecal transplant like colon cancer & stuff
Posted 9/19/2015 10:19 PM (GMT 0)
Oh goodness, no. FMT is 90% successful in treating c. diff. the first time, and goes up to 99% for those who need a second one. They do a colonoscopy and just introduce the healthy bacteria from a donor in. So the only side effects, risks, etc. (if done by a doctor) are the ones associated with a colonoscopy. Some people get a bit constipated for a couple of days afterwards, but that's seriously all it is. It's dangerous to try to do it on your own, though. When a doctor does it they will do bloods samples and stool samples of your donor to make sure they are healthy.
✚ New Topic ✚ Reply
12