Freaking out - help

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flowergirl

Joined
Sep 16, 2011
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florida
freaking out - help

so, i'm starting remicade on monday, and of course i start googling reading horror stories of remicade.
i know that any drug can cause a reaction, and that there are risks with anything. and i know i need to try to get this fistula closed up. surgery is not without risk, either, is it?

but now i'm kind of freaking out. are bad side effects more rare than i'm thinking? i realize that usually when people post about a drug on a website they had a bad experience, and people don't usually post good experiences.

i just need some reassurance from people i guess.

sorry to be so needy.

:frown:
 
Hey flowergirl I was the same as you, although I was my Gi's first patient to be on Remicade, I still think it is worth a try. I had a reaction, bad one but... they have to report all problems clinically even if they dont have crohns, it was intended for Arthritis initially for the inflammation and therefore all reactions must be accounted for. NO two people are exactly alike on any medication nor is the disease.

Someone from the Remicade club can help you more. It is better to try first, and then surgery. Surgery is the answer for some, but not everyone. :hang:
 
I was the same way also. I even waited for almost a year before trying it because of my fear - thought I would give Azathioprine a whirl first. I am also on it to try to close a fistula and heal my peri-anal area. I just finished my loading doses.

I finally told myself to stop reading the horror stories on the net and put my trust in my GI. I brought up all my concerns and he did a good job at addressing them which helped. Like you said people come on the net to post the bad and not necessarily the good. A lot of people receive Remicade and with every drug people can react differently.

Wishing you the best in your treatment.
 
Hey, FG. I just had my second infusion yesterday. A bit nauseous and tired today, but nothing major. I actually came into hospital two weeks ago for a pre-op assessment. However, as antibiotics seemed to have closed my fistula, the surgeon advised me to give the Remi a try, saying it's best to avoid surgery if you can.
It feels like the devil and the deep blue sea at times. Hope all goes well for you.
 
Heyyy FlowerGirl!!
I just had my 3rd dose Sept 15th, and am finally beginning to (hopefully) see what I think is the Remicade start to work. I did exactly what you did: googled, researched, freaked out! But reading what others' have said on here has really helped me to realize that all medicines, remi included, affect everyone differently. My GI scared me by saying we needed to try surgery since it appeared that the remi wasn't working, but some say they notice a difference after the first dose, others say it's taken up to 6 doses to see a difference. So I am not willing to give up yet, and you should definitely give it a try--you never know unless you try. Someone posted on my thread and said "you can always try surgery, but once you have the surgery you can't go back" which is so true. There are risks involved with EVERYTHING!
This is what I experienced with my remi: I get 2 tylenol and 1 claritin before hand just to make sure I don't have a reaction--I never have had an adverse reaction, but I've read/heard about hives, itching etc. The first infusion takes the longest, and they progressively get shorter. My first took almost 4 hours (including the bag of saline they gave me afterwards). I took the rest of the day off from work, came home and slept for like 5 hours--it knocks me out. But then got up, was starving, and continued on normally. I have had some body aches-almost like the flu was coming on, but they went away after a couple of days.
I guess my biggest piece of advice is to take everything you hear/read with a grain of salt. You might be one of those lucky people who notice a difference immediately, but don't get discouraged if you don't. If your body can take it, and your GI is willing to try it, give the Remicade a good long shot.
Praying for you! Hope everything works out :)
 
You are definitely not being needy! We have all been there before, being prescribed a new med that we don't know much about. It is natural to want to know what will happen. The adverse reactions are obviously fewer than the people the Remicade helps, but they don't report the number of people who have success on the drug, just the percentages of reactions and what type. Try not to stress about it, it might make the experience worse if you are anxious.

Like so many other people have said, doctors do a risk/benefit analysis when you're put on a new drug. Obviously your GI thinks the benefit to you and the fistulas far outweighs the risks of the drug, at least for you. Surgery is permanent, once they take something out they can't put it back in, and with Crohn's there's no promise that the disease won't pop up somewhere else later.

Good luck on Monday! I hope it goes wonderfully for you!
 
Hi!:). I've been on remicade over a year now. I have an infusion today actually. I love it. It has not healed my fistula but it keeps me going and keeps my crohns in remission. I used to get cold symptoms on the day of but don't anymore. I usually take a half day off work to get my infusion but otherwise keep a normal schedule. I leave my infusion feeling relaxed, recharged and on top of the world. It's a little cyclical for me though. The week before my next I sometimes feel like I've been hit by a truck bc the effects have worn off. But i am really looking forward to my treatment today:). I hope you do awesomely on remicade and don't need surgery! Good luck!:)
 
Ps I'm having surgery in December to fix my fistula. I intend to stay on remicade afterwards to keep the crohns in remission. Good luck!
 
so i had my first infusion this morning. i was very nervous (still am, a little bit, to be honest). but everything went well, and have felt pretty normal so far. here's to hoping that continues and holes will start closing up!
 
Hey there I guess I'm a little late to the discussion here but I'm glad your first one went well for you. I'm actually sitting at my Remicade infusion typing this and it's almost a year to the date. I started September 27th last year and I can honestly say it's changed my life.

It's easy to pay attention to the horror stories when your nervous about something but if you try and focus more on the positive times people have had with Remicade there are far more. If most people were having those horror stories then the drug would no longer be approved. Best of luck and have a good time at your infusions it's nice and relaxing I find :) Layzboy recliner right now.
 
thanks everyone for the advice. still doing ok. hope it keeps up. my butt actually hurts less. that's a positive. my crazy acne that started up with all this is a little better. and i'm really hungry. is that a side effect? i'm not on any prednisone. lol. it's good, because i need to gain back at least 10 lbs, if not 15 or 20, just to have some spare.
 
Hi Flowergirl. I had a really bad reaction on my second dose (and I think that is when you are more likely to have a bad reaction). However, because I was at an infusion center with nurses present, nothing horrible happened. We are all nervous about these potent drugs but know that there are plenty of people who never have reactions, and if you do have one, there are people there to help you. I wish it hadn't had that effect, because I loved the "me time" I got at the first infusion ;)

I hope you are able to continue to improve!
 
So glad it went well Flowergirl. It's so funny you mention acne, because mine totally cleared up with Remicade in about three months-I always suspected it might be Crohn's related!

My fistula cleared in two infusions. I always get pain in my chest dirung infusion (I've been on it a year and six moinths)-this is normal but no one mentioned it to me so I freaked out. My infusion nurse recommends Tylenol arthritis formula every six hours for the first three days and no more chest pain. I'm always tired for two-three days afterward.

It had been totally worth it-my health is so much better! Here's to hoping your sucess is even better!:cheerss:
 
linda - if you don't mind my asking, what kind of reaction did you have? i've read some other people's on here.

mountaingem- yeah, the acne thing is weird, but i'm not complaining. it's all probably just inflammation, right? i did have some very slight warmth and pressure for about a minute when it started, but then i was fine. i did have a mild headache the last 2 nights, but i'm not tired.
 
Flowergirl, I had an anaphalctic reaction. I couldn't breath and my throat started to close up, my blood pressure dropped and my whole body broke out in hives. The nurse had to give me an IV push of benadryl and then another about 20 minutes later. It was really scary, but that is why you do it at an infusion site.
 
Yes, it's really important that you speak up immediately if you start feeling anything other than fine. At my third infusion, I had a mild anaphylactic reaction once the drip started. My throat closed up and I found it hard to breath - so I called out for the doctor and he immediately stopped the drip and had me rest for ten minutes. Once I got back to normal, he then resumed the drip at a slower pace and there was no further reaction. Apart from that one episode, I've been fine since (on my fifth infusion now) - and Remicade has, for the most part, worked very well.
 

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