See Alike in...

Alike App

Browser

cayden

760d

i’ve been on remicade for almost 6 years now and i’m worried it might stop working

Top reply
    • DD44

      742d

      Doctors can just make adjustments. To start a doctor should be ordering a blood test to check therapeutic levels of Remicade in your system. If the number is lower than they like, you can get an infusion sooner. So I went from every 8 weeks to every 6 weeks. Also I’m 30 now and began Remicade when I was 18.

    • DD44

      742d

      Doctors can just make adjustments. To start a doctor should be ordering a blood test to check therapeutic levels of Remicade in your system. If the number is lower than they like, you can get an infusion sooner. So I went from every 8 weeks to every 6 weeks. Also I’m 30 now and began Remicade when I was 18.

    • BeautifulSavage

      750d

      I know how you feel about doing this for an eternity. I was born with Crohn’s disease so it’s basically all I know. My advice sweetheart is to know that you have Crohn’s and to keep in mind that it’s not always going to be easy, but it will get better. And the time when it’s better and you’re in remission savor those moments. I’m barely 21 and I’m already mentally tired from dealing with this since I was born. But I keep going on because I’ve accepted that this is what I have and what I have to live with for the rest of my life. It get easier honey

    • CrohnsyPoo

      759d

      Camden, I feel your pain here as I'm soon to get on Inflectra (basically same thing as Remicade). I have a really good GI doctor who has always been down to earth with me. With Crohn's medication, it's very possible for any medication to be become ineffective, to have never actually been effective, or to not be strong enough for more severe flares. That said, he has many clients who have been on IV and pill form of Inflectra/Remicade for over 10-20 years that are doing just fine. If your symptom free, he says there's no point to change it and can even make the medine less effective if you tried switching back. But if you are having symptoms, I recommend talking to your GI. Doesn't always mean you need to change your current meds, just maybe evaluate a few things.

      • cayden

        758d

        @CrohnsyPoo after my insurance changed, i was put on inflectra because it didn’t cover my remicade. i recently was switched back to my previous doses, and i’ve noticed it not working as well. my GI doctor had mentioned years ago that if the remicade stopped working there weren’t that many options and chemo would be the solution to reset the whole immune system. that generally is what i am worried about. i’m only 13, and it feels like ive been doing this for an eternity. ive had these worries since i was diagnosed and i was just wanted to get other peoples opinions who go through the same things, so thank you so much, your message was comforting:)

        • 00meow9

          747d

          @cayden I know I was diagnosed with it at 12 and they have summer camps for people with the disease you should ask your gi about it might help you feel less alone

        • CrohnsyPoo

          757d

          @cayden Lol, there's definitely a lot of us out there that go through those similar things. Just gotta say though, it's completely unfair that you're having to deal with this at 13, being 6 years into this.... I'm so sorry. I was diagnosed at 30, now 35, and doing the medication dance as we speak. Whether you're 13 or a grown adult though, it can feel like you have no control over your health when the medical professionals don't have all the answers and may not during our life time. Maybe you already do these things, but I think it's important to remember to let go of what we can't control, as worry only hurts the ones experiencing it, and live freely taking control of what we can. This may not sound very exciting, and I apologize for the long message as I didn't have time to make it more concise, but optimizing your immune system with what you can control can make a huge difference. Exercise, drinking water, getting sleep, and just taking deep breaths can help your body to run at its best and improve your quality of living. Not saying they're a cure for IBD, but getting regular sleep helps our minds think clearer, make better decisions, and our muscles to recover quicker. Water helps our organs to run efficiently and fight infections and provides us with natural energy to make us feel alert. Exercise at just 7 min a days just to get the heart rate up, improves moods by at least 10% happiness (forgot the study I read but I also work in the fitness industry and this is widely known). And when you can't exercise, just give yourself a break. And breathing.... Even just a few calm, slow breaths here and there to easy or prevent tension can be hugely helpful to calming the central nervous system and allowing our bodies to take care of what's really important. Our minds and stomachs can be linked, just like how someone might get "butterflies" in their stomach with they're around some one they have a crush on. Take deep breaths, and getting your mind together helps get your body together. I have to remind myself of these things all the time...I've taken a week vacation from work and am surprised at how my flare isn't as bad just from getting better sleep, drinking water throughout my day, and taking a break from work stress. Many women talk about their symptoms being worse around times of the month. I imagine that teenage boys and girls, going through puberty, probably doesn't help. So take into account that doing your best to take care of your body and mind only helps to provide you with more stability. I just want to say...IBD might be a lifetime thing but trust me when I say, you have a lifetime of good friends, romance, and fun experiences to look forward to. Gravitate towards people who get you and you get them. Let go of anyone who doesn't fully get it, or takes a lot of energy to convince. Last thing, what if the Remicade stops working and you switch to chemo later? Or nothing in the future actually works....I say, so what. Don't waist a minute of your life worrying about something you're perfectly strong enough to experience later. There's no point in living it twice, once in the pretend future and once in the real future. Don't miss out on what is wonderful in your presence. And most importantly, remind yourself that you're so much more than your condition.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion