I have been taking my Infunion for 15 years, it has helped me so much!!! 🙏

@vinayagamoorthy2889

4 ай бұрын

Are you having any side effects? don't you have any symptoms that you before taking remicade.

I had my first infusion yesterday as a matter of fact it took 2 hours I was tired because of the allergy medicine but the few hours afterwards and the next day which would be today that I'm dropping this comment I have already seen improvements in my condition and I get my second infusion in 2 weeks. And then every 6 weeks for about 4 years but it's okay it's already making a difference I was very scared super concerned about a reaction nope nothing which was a blessing.

I have Ulcerative Colitis, I had my first infusion and it started to work immediately. I know I would be dead without it, I am very thankful for it.

@LetsTalkIBD

7 жыл бұрын

William Lauzon that is awesome! I am so glad it is working for you and I know a number of people feel the same way about Remicade. Thanks for commenting!!

@marykayandelle

3 жыл бұрын

how are you now? my daughter is 11 and has this.

@charlesd9949

3 жыл бұрын

@@marykayandelle I am going for my infusions every 8 weeks, keeps me on track. I keep in contact with my GI and the infusion nurses take care of me. Where are you located? I am in Canada. :)

@marykayandelle

3 жыл бұрын

@@charlesd9949 USA. any side effects?

@charlesd9949

3 жыл бұрын

@@marykayandelle No side effects from the Remicade.

Thank you for doing what you do. I have crohns disease, and have been a regular at the hospital lately. I appreciate what you guys do so much.

I've had my arthritis and psoriasis treated with Remicade. As an adult, the treatment isn't painful, just a bit boring. My infusions took 3-4 hours and the staff at my clinic made that time bearable! I can only imagine how children handle the length of this treatment. Bless you for being willing to help the little ones get better!

@LetsTalkIBD

7 жыл бұрын

Andrea Smith usually our childlife team will find something to keep them busy or they watch a movie with their parents!

I have crohns and this is a great video!! Definitely subbing❤️

As for me, I was treated as a child in France many years ago. My infusions were 2 hours long. I usually was in a private room for the afternoon then and the nurses didn't stay, but they would check on me regularly. Before the infusion, they would do a blood test where the results take about 2 hours to come back. Right before the infusion, they would give me some antihistamines to prevent any allergic reaction. Overall, remicade was just a very long process, boring and luckily, uneventful. Come in early in the afternoon. Wait for them to get the blood for testing, wait for the results, wait for them to come back to me when they get them. That's already 3 hours usually. Then 2 hours of infusion. Then at least 1 hour of observation... I went through so many books while waiting to come back home! I would be tired on the evening, but usually super energetic the next day, it was the best feeling :)

@LetsTalkIBD

7 жыл бұрын

Florent Castelli thats the great thing about IBD, many of things we do to treat ourselves take forever, so we are all very well read. Thanks for the comment!

I’ve been on Remicade for 13 years. It’s a life saver. Not impressed by insurance companies making people change to the generic. I’ve heard of so many people reacting poorly to it.

I start remicade tomorrow. Thanks for the information! 😊

This was really helpful! Thank you

Thanks for the video, I have an infusion nurse interview tomorrow, so this was helpful!

@thatkingnas9388

3 жыл бұрын

Hope u got it👍🏿

Awesome!

Hi Maggie! I appreciate your info about inflixamab. My hx is 12 y of sarcoid onset in GI and now systemic sarcoidosis (GI, stomach,liver, lymph, eyes, heart and lung) I had one dose on inflixamab 10 y ago or so and at that time I had a bad reaction. I was switched to another medication. Well, needless to say, I had a second infusion on 10/17 and so far did okay. I did have pre treatment for anaphylaxis since that was my issue the first time. My next dose is on 10/31, wish me luck! I hope this is something that I can continue and not have many side effects since my options have run out on treatments due to the complexity of my disease process. Thanks again!

Its awesome you work at CHOP! I dont personally go there because im too old but i have many friends who are on the GI unit there as i have gastroparesis.

@LetsTalkIBD

7 жыл бұрын

Emet Tauber Yes we have a number of gastroparesis friends who visit us! I have probably met some of your friends. It is a great unit to work on because I get to see a number of GI conditions!

I've had three remicade treatments for ulcerative colitis at 800mg and none of them worked the most recent one was at 1600mg and it hasn't worked I'm still on prednisone while on treatment. I have to wait 6 weeks before I can be switched to Entyvio. Hopefully the Entyvio works better than the remicade.

You’re amazing

Thank you

I have crohns disease and I lost my entire large intestine to the disease had the bag for 3 years and was reconnected. Well during that time the doctor i had didn't put me on any medication and the crohns came back in 7 inches of my small . I get remicade infusions every 8 weeks.. I am in remission but have a question. Why would one stay on this knowing it is a poison close to chemo ? Second question is there any other treatment out there that would be better ?

I have UC and I am terrifeid of needles and my veins ripping out and all these made up things my mind creates to scare me. Any tips to make it less scary? xD

My little cousin has Crohns and she got remicade infusions regularly, holy crap children’s hospital of Philadelphia?! I’m so jealous. I’m an RPN. I really want to upgrade but in my province they are replacing RNs with RPNs in a lot of settings.

I start remicade for the first time in 2 days. Really hope it works for me and doesn’t give me too many symptoms!!

@mcrna

5 жыл бұрын

Emma D how did it go for you? Thank you

@deannalachelle9319

5 жыл бұрын

I’m about to start soon also... Did it go good??

It also treats ulcerative Colitis, which you forgot to mention

Sadly, I reacted to remicade. Not so sadly, i am on humira and feel so much better!

I just recently had an ileostomy a few weeks ago due to a perforation where my small and large intestine connect. They cut a small amount of intestine out (around 30 cm) so I have a temporary stoma bag until my reversal which will be in 3 months. My doctor pre surgery was telling me to get on remicade for about 2 years, but I was hesitant due to the longevity of the treatment and trying to live my life more holistically without drugs. I never thought that my symptoms would get so bad that it would result in surgery. You mentioned you never went on the remicade ... but do you think that remicade would be a good option for me ?

@shrimpospy

2 жыл бұрын

I pray you try it. Your health matters

Can you talk about what it's like being a nurse with crohns? I have ulcerative colitis and I want to go to school to be a paramedic. Is it harder having it in the medical field? I know nurses and medical staff don't get a lot of bathroom breaks and that's what worries me the most

@ablair33556

3 жыл бұрын

I know your comment is 3 years old , did you get your paramedic? I worked in the field with UC for several years and towards the end it started to get really hard. I hope things went well for you.

I have Crohn's disease and I get remicade every 8 weeks it's helped me out a lot. My doctor says it's keeping me away from surgery and I'll have to be on it for the rest of my life which is scary.

@susanswope4924

2 жыл бұрын

Its bad

@MrsAlmaTrumble

2 жыл бұрын

@@susanswope4924 yes it is. We think my body is rejecting it now.

@susanswope4924

2 жыл бұрын

@@MrsAlmaTrumble they are burying the truth!!!

@MrsAlmaTrumble

2 жыл бұрын

@@susanswope4924 huh?! Who?!

@susanswope4924

2 жыл бұрын

@@MrsAlmaTrumble the drug co's

Mam can you share you experience what if someone have dobious TB igra test? What's doctor line of action then.

Is there a wait period for insurance approval as well, or no? This was the hold up for me when I was on remicade on the pediatric side but that was years ago and I also started it outpatient.

@LetsTalkIBD

7 жыл бұрын

Crohnie Chronicles in patient I am not really sure - I haven't had a patient not get it because of waiting for insurance approval, but we also have social workers right on the floor who deal with those issues, so maybe it is faster?

@charlesd9949

7 жыл бұрын

Crohnie Chronicles I live in Canada and need 2 insurance plans to cover the cost. My first couple of infusions were in the hospital and were covered. I hope that helps :).

I wish remicade had worked for me. It worked for like 2 months and just stopped out of no where. After that my doctors said to throw in the towel and go the ileostomy route. Although I am very happy with the ostomy, sometimes it gets to like why me you know when you have issues with leaks or adhesion. Great and informative video.

@sinister_angel5825

4 жыл бұрын

Leaking of the medicine could be because of the length or type of needle they used, I had my remicade leak around my port because they used too long of a needle

Bjr hier c c'etait ma première perfusion de biothérapies remicade en perfusion la prochaine serai après 15 jours....jai eu juste de maux d tête et douleurs inhabituel de mes mollets et genoux ....que dîtes vous sur ce produit???? Er pourquoi il mon pas prescrit des injections?

I have hs disease been on humira 4 years. Was stage 3 and anorexic they want to switch me to remicade cause after 4 yr I'm breaking out with psoriasis

Do you have to check blood tests a week before administering the remicade injection?

@grahamsgoneagain

2 жыл бұрын

Yes

Renflexis or inflectra.

i just got my first remicade infusion and i’m getting a second tomorrow, i have crohn’s disease. i have relief right now because i’m on prednisone, but i have to stop soon. will this remicade work, i’m very curious and nervous please respond

@sinister_angel5825

4 жыл бұрын

This is a bit lat but oh well, I have my infusion tomorrow, this will be my 7th theme I think and it’s helped my arthritis, fibromyalgia and ancolosing spondylitis (Zach from try guys has done a great video on it) and my nana has it for her crohn’s and it’s helped both of us loads , it may take a couple doses but it’s so worth it, I hope your infusion went well :)

@theTOPSTARrap

3 жыл бұрын

I have tomorrow

I have done Remicade for a year now at least 4 times per day in a work week. It's a weight based medicine. Should last 2.5 to 3hrs.

what's the cost of remicade and how is it covered by insurance?

@igeniei2836

4 жыл бұрын

10,000 for my dose but I have insurance

@sukeshrohith9046

4 жыл бұрын

@@igeniei2836 which country do you belong to?

@igeniei2836

4 жыл бұрын

@@sukeshrohith9046 i live in the us where each vial=100 mg of remicade costs 1200

@sukeshrohith9046

4 жыл бұрын

@@igeniei2836 Woah that's expensive but how much of that part is covered in the insurance? Do you get like more coverage because you are a US citizen?

@igeniei2836

4 жыл бұрын

@@sukeshrohith9046 no you don't just let get insurance for being a citizen I get mine from my work and its 100 percent covers by my insurance

Love you gal but hate the music

So you bury the negative comments with 4 year old post ,that's science right?????

@LetsTalkIBD

2 жыл бұрын

I'm not sure what you mean?

@susanswope4924

2 жыл бұрын

@@LetsTalkIBD I want to say so much to you it would be a long talk, but your busy I'm sure.I love your videos, your so brave and strong.I love that about you Maggie.

@susanswope4924

2 жыл бұрын

@@LetsTalkIBD right now I'm having a bad crohns attack and was crying alot yesterday. I guess we learn to deal with not eatting alot. I'm 65 and its been a rough one, but you always help me to keep fighting

I love your videos. I've been watching for a year. But I have to say remicade and humura ruined my life, I've had years of side affects, like migraines and numb toes. I'm 65 and still have side affects. No jab is any good. Not worth the risks. No benefits for me at all.

@LetsTalkIBD

2 жыл бұрын

Yeah, it seems to work for some and then cause nasty side effects for others!

Remicade treatments don't work for me. I have doubts about the composition of the remicade. There would be mouse cells. The only alternative that I have found is quite simple to do. It is without side effect. In a glass, you mix: - 1 spoon of turmeric - 1 tablespoon of olive oil - a little pepper I did not extend this treatment more than 3-4 days. I no longer need to go to the hospital. My gastroenterologist once told me that my natural alternative is part of a cult, yet it has been working very well for 10 years. I had a few seizures and got away with turmeric. The medical staff are always trying to sell you medicine. When they injected me with cortisone, I also needed calcium ... Natural solutions work better, are much less expensive and have far fewer side effects.

@jackieroman6371

2 жыл бұрын

Can u explain a bit more If I do this,o drink it just like that? How many times? Like once a day? Am very interested am tired of all this new meds 🥺

@presidentdutoaster7921

2 жыл бұрын

@@jackieroman6371 I understand you. Once you've mixed it in a glass, you drink. But the taste is gross. Before lunch, I drank it on an empty stomach. I also drank one before going to bed. After 3-4 days with this potion, I felt a lot less irritated. But you must also be careful not to eat foods that could irritate the intestines. But I'm not a doctor, it's a solution that works well for me. I wish that would work for you too. When we are at the lowest, the quality of life is non-existent. I had to be hospitalized in 2011, they tried the remicade during my hospitalization. It worked but after 2-3 treatments I couldn't stand it anymore. I had to look for alternatives and came across turmeric. Since 2013, I have had other seizures. But I made the recipe with turmeric and I came back much better. Learn about the benefits of turmeric, other solutions are surely possible. Good luck

@tonyaperry4763

2 жыл бұрын

@@presidentdutoaster7921 wow, that was a long hospital stay, recieving 3 or 4 treatments during your stay would have made your time as inpatient no less than 45days. Taking the infusions at least 15days apart for the initial first 3 treatmentms. Then the 4th treatment being 8 weeks after your initial 3. I bet you were more than ready to get out of there and go home. You said the remicade really helped. Then you said, after 2-3 treatments you couldn't stand it anymore. If it helped, what happened that you couldn't stand it anymore? Did you end up having massive, negative side effects or what? I took my first treatment today. I have tried so many other medications. So far NOTHING has helped. My diagnosis is different from most here. I have RA, OA, PA, and DA and other diagnosis that is related to the autoimmune system. I have tried multiple herbs, vitamins and other natural remedies, to no avail 😫. I am to the point, I don't care, anything to get this inflamation OUT of my body! So far nothing is helping to reduce the inflammation, the biologics didn't budge my markers at all! Honestly I am putting hope in this remicade. I desperately want to get better, as the pain from the RA is getting unbearable. I hope the turmeric/olive oil is helping you. BTW....you probably already know, if not...... black walnuts is suppose to help tremendously to get rid of inflammation in the body.