Fearing Remicade! Help?

[Peach]

Hello to you all, I'm a young teen in search for some light on a new matter that came up recently in my fight with Crohns.

I had an emergency appointment this morning and I was prescribed a new medication called Remicade and to be extremely honest, after reading all the papers provided by the doctor and information online, I'm scared to take it.

According to my doctor, my body got used to the medication I was taking and the effects became almost "none to act against the infection" and she had no other choice but to put me on Remicade.

I do know it's injectable, great - more needles, however, the side effects are so many and so scary, to me, that they actually told me, instead of being there for an hour after taking it, to stay overnight to be watched.

I'm really scared and I don't know what to do. Will I be fine? Can my health get worse? Someone help!

 

[Maya142]

Hi and welcome!

My daughters were put on Remicade as teenagers. They didn't have ANY side effects with it at all. It was very easy. The hardest part is the IV, but once that it is, the infusion is a breeze! My girls quite liked the chance to miss school and nap and watch TV. It is a long infusion - it might take 3-4 hours - so make sure you bring a book or something to entertain yourself.

For the IV, you can ask for numbing cream which should help. The nurse can also use a heat pack to make your veins pop out so that they are easier to find. Make sure you are hydrated - that also will make you an easier stick.

The point of Remicade is to control the inflammation caused by Crohn's. Over time, inflammation can cause all sorts of complications, like strictures (scar tissue), abscesses, fistulae etc. which you definitely do not want to deal with.

It will help heal your intestines so you can absorb nutrients properly, which will help you gain weight and grow and develop.

This is a great presentation about the risks and benefits of Crohn's med:
http://programs.rmei.com/CCFA139VL/

There are risks with Remicade - there is an increased risk of infection. My girls don't do anything special except wash their hands a lot. Both started biologics in middle school and both have gotten through middle school and high school without any major issues. In fact, they didn't get sick much at all.

I was really scared to put my daughters on such a "strong" medication, so I do understand your fear. But at some point the disease became much scarier than the medication.

My daughters both went from being in pain and missing school all the time to being happy, healthy teenagers on biologics. I'm just very glad they exist!

Good luck!

 

[my little penguin]

Ds is 13
He was dx at age 7.
He was started on remicade at age 8
Outside of the iv poke
Ds loved it
He got to miss school
Lots of snacks
Good luck

 

[HannahR]

Hey Peach, I was thinking the same thing as you when I was prescribed. What I found is that I really want to feel better and that weighing the risks with feeling better really helped. Yes there are scary side effects that are possible but long term effects of untreated Crohn's are scary as well. I haven't been put on it yet as i'm waiting for insurance to approve but I hope more who have experience with this drug can comment and help your fears .

 

[HannahR]

There is also a support group on here for Remicade where you can get some answers and hopefully ease your stress

 

[monbohn]

Hi Peach I've been on Remicade. It helped me more than anything else had in quite a while. I had no side effects. It was about a 4 1/2 hour process total. The dose is based on your weight so if there is more than a 10lb change either way they need to adjust the dose accordingly so if you know before your appointment that you gained or lost more than 10lbs call ahead and let them know. Of course they'll still have to weigh you but it'll save time if they can prepare the medicine for the right weight instead of having to redo it. That's if the pharmacy is in the same place as the infusion like it was for me. Anyway, I'd get weighed, they'd check my vitals before and after my infusion. My veins are tiny and difficult... for anyone who has difficulty with IVs or blood draws, I bought a Thera Pearl hot/cold pack at Walmart for $7 and would heat it up before I left and hold it on top of my hand until I got there and they had no problems with my veins so wherever the best spot is for you put heat on it to bring the veins right up. I would either sleep or mess around on my phone during the infusion. Afterwards I had to wait an hour the first couple of times to be sure there was no bad reaction and then they only had me wait half an hour each time after that. They usually hydrated me as well while I was there because I had gotten pretty sick waiting and waiting for insurance approval when my previous meds stopped working. I can tell you that the Remicade started helping me right away. I was on it for a while and I wanted to stay on it but my doctor felt I was responding more like someone with Crohn's than UC and felt we could find something even better for me. Don't be scared. That terrifying list of side effects comes from when they do the research studies. If only one person has a certain side effect they have to list it as a possible side effect...for obvious reasons. Always look into what the most common side effects are, which your doctor should tell you or the infusion center should go over with you. Find out how common they are....should you just go ahead and expect them right off the bat or do most people not have any? Then you go in prepared for the most likely scenario. But always be aware of all the possible side effects, just in case....just don't let the list overwhelm and scare you. If all of those side effects always happened I don't think any of us would be taking anything because the "cure" would be worse than the disease. In the case of Remicade very few people had side effects at the time I was starting it. One time my temperature was just slightly elevated after my infusion. They told me I could take some Tylenol if I wanted to. I didn't. Of course I paid attention to make sure it didn't continue to climb. But it's one of those common things. So I really need to learn how to keep comments much shorter than this, lol.

 

[Scipio]

The risks from Remicade are real but they are very small risks. The risks from uncontrolled or poorly-controlled Crohn's are enormous.

 

[Bufford]

Take it from one who had a bad reaction to Remicade. There is nothing gained if you don't try it. Okay for me it was a miserable fail, but it certainly did not kill me. The infusions are not difficult. The worst thing was the 3 hours it took, but taking a laptop makes the time go quick.
Remicade made me very sick and I was forced to go off after the 3rd infusion. I developed Lupus like side effects, and I could not keep the colostomy bag glued to my stoma, and required all sorts of tape to keep it on.
I had a wide range of side effects that included stomach cramps, pounding heart beat, fever, feeling weak, and the skin was peeling off my face like old paint.

6 months after the last infusion my life returned to normal. Did I regret trying Remicade? Not at all, it answered my question did it work for me. No it didn't. We are all different, but if Remicade is offered then at least give it a try.

 

[bobbet]

Hi Lovely, I know everyones different and reacts differently to medications and it is wise to be clued up on side effects but I Just wanted to share my experience with remicade..went on to it 2 years ago in desperate need of some quality of life- I was bouncing back and forth in hospital mostly for 10 years on/off (in for 2 weeks home for 4 weeks back intreated with steroids mostly but tried a few immuno suppresants) not much respite in between, pain constant could not grasp hold of any enjoyment in my life due to being so physically and emotionally driven in to the dirt with this crohns..anyway I was very apprehensive and scared of some of the side effects BUT at that stage of my life I didnt care I just remember thinking if I just get 1 year of quality of life I will settle for that as I just couldnt go on suffering like I was..its been 2 years and ive NEVER been so well!!..nothing works like this stuff does for me-its no cure I still get times when Im ill but nothing like i had been not even close to as bad-ive even been in work with no sick days for over a year..dont dwell on the side effects too much, nobody knows what the future holds so being well now to me is all that matters..I do and always have looked after myself very well diet, excercise, de-stress, relax, rest-ive never been so physically strong and well..I do get a lot of infections I will say but they are a breeze to put up with compared to what I was going through with my crohns..good luck to you xx

 

[shamrock15]

I will add yet another voice for those who say it is worth the try. I have had crohn's for about 30 years now, and remicade (combined with imuran) was the ONLY approach that ever really gave me relief. I have had a decade of good health now and have been able to move into a rewarding career and family life. I seriously doubt that either would have occurred without it. In fact, I probably would have added to my list of 6 surgeries due to crohn's as they were coming more frequently. I am somewhat concerned that I may be just about done with it and am currently having my levels checked as I seem to once again be developing symptoms.

For a long time, I have only had to deal with the damage done to my body early on by crohn's. You are young - stop the damage now so you can hopefully move on to a healthy early adulthood. It is well worth the chance, my only regret was that remicade wasn't available earlier for me.

 

[Idiom]

I was also concerned with the many what ifs when I started remicade.
One way I rationalised it was to look at what was actually happening – I was sick – and needed help, rather than focusing on what negative things might happen.

 

[aypues]

Remicade is a miracle drug for me. I have no known side effects and I am on a quadruple dose at the moment. I think the risks are very low considering the risks of untreated chronic disease which can be much more debilitating. You should feel much better on it. If it doesn't work just switch!