Supposed to start Remicade

[michelebooo]

I was just in the hospital for a flare up.
No problems for over 25 years and now this.
GI said 6-mp not working anymore.
So now wants to start me on Remicade.
I was in shock and started to cry. Very scared about this
Especially seeing the side effects! It's supposed to help
But seems this IV Med is life changing.
Just wanting to know how any of you who are on remicade are doing and is going to be ok?
I'm on a temporary steroid now and hate these side effects.
Doc won't take me off steroid until remicade starts.
Thanks for any input!

 

[Honey]

Hi there and welcome, Yes it is difficult dealing with new treatment but remember we are all individuals in fighting this illness. Remicade may be the treatment that works for you. There is also Humira injections which you give yourself. That worked for me for a while, only side effect was hair thinning and it stopped growing.
I am currently being asked to go back on Remicade. I have been well for 2 and a half years. Not keen either but if your symptoms get out of hand, then there is no other choice. Talk to your doctor about your fears and ask plenty of questions. It helps to be informed. Hope I have helped. Get well soon.

 

[my little penguin]

The key is potential side effects
Meaning you may not get any of them
Read the insert on baby Tylenol .
Risk of liver failure death Steven Johnson syndrome
Allergic reaction etc...
And this is given daily to infants
All things have risks
It's the benefits that are great
When biologics work they work extremely well

Ds was on remicade at age 8 for about 8 months.
He had an allergic reactions- but to put it in perspective his doctors were expecting it
He reacts to many drugs /foods /bees/cold /pollen etc...
Basically everything

But he was almost normal on remicade .
He swims competively and when he had an infusion his swim coaches knew without us telling him just by how fast he was swimming

He has been on humira for about 4.5 years now and doing well
All of his scopes have been clean since starting biologics not something I could say with 6-mp

Good luck

Tagging clash
Maya142
Mehita
Farmwife

 

[Farmwife]

My dear Grace failed a lot of drugs up front.
But Remicade is now her wonder drug.
I hate having my 7 year old on such a big drug
But I'm thankful it's working.
Hang in there!

 

[Maya142]

My kiddos both did well on Remicade. They had no side effects at all, besides being a bit tired after the infusions. No increase in infections or anything like that.

In fact, both my girls have had many more side effects with Imuran/Methotrexate.

Biologics have been miracle drugs for both of them.

Good luck!

 

[nitty]

It's not an easy decision to make, but consider the 'side-effects' of not controlling your disease.

It's so frustrating when you've managed to be in remission for so long. Hopefully, if you can find the right treatment again then you can get back to a 'normal' life soon before getting any other complications. It might take a bit of trial and error first.

Good luck.

 

[Mehita]

My son has been on Remicade for almost four years and been in a nice solid remission since he started. He's had no side effects to speak of really. Heck, it's the Benadryl pre-med that affects him the most and makes him tired. Like MLP said, it's the potential benefits that you should give more weight to than the potential side effects and, just based on what I've seen around here, when the biologics work, they tend to work very well.

Good luck!

 

[northwesterner]

But seems this IV Med is life changing.
Just wanting to know how any of you who are on remicade are doing and is going to be ok?

For many, many people Remicade is life changing - in a good way. It induces remission - to the point that many people only thing about having Crohn's once every two months when they go in for treatment. I was one of them for seven years.

 

[valleysangel92]

I was only on remicade a short time but it really made a difference to me, I felt loads better - reduced pain, less toilet trips, sleeping better, less joint pains, more of an appetite and an improvement on my blood tests. Unfortunately I had to be taken off it due to an allergic reaction but I would still say it is more than worth a try.

I know the side effects look scary, but remember they are only a maybe, not a garuntee and many people only get very minimal side effects like tiredness or maybe a headache the day of the infusion. Every medication we take has a potential risk to it, even the most basic painkillers, its all about weighing that risk up against the potential benefits. Under managed Crohns can be really dangerous and result in severe damage with a higher risk of complications like bowel perforation. Your doctor will be aware of the risks of the remicade and obviously thinks they are outweighed by the benefits it could have for you.

 

[Fosterfamily2303]

So I was on remicade for almost a year . I took Benadryl and Tylenol before each 3 hr infusion. Around 1 year I dev drug induced lupus. I will say however that is the ONLY drug that helped me .