Starting Remicade and feeling scared

[KristinaEli]

I was diagnosed with Crohn's disease in March of this year via colonoscopy. From what my GI could see it seemed I only had a mild case, but from my symptoms he suspected I had a worse case in my small intestines. My GI started me on Asacol immediately but we soon realized that it was only making the problem worse. I was put on Proctofoam and Mesalamine to help ease my discomfort but they did very little. I was put on Entocort and Bentyl roughly a month and a half ago and it worked wonders. I flew to New York for my 18th birthday, ate whatever I wanted and as much of it as I wanted, and even had the strength to hike 1.5 miles up (and 1.5 miles back down) a waterfall.I felt amazing. About two weeks ago my GI began tapering me off the Entocort, dropping me from three pills a day to two, and within a week my Iritis was back and I was experiencing loss of appetite, nausea, diarrhea, and exhaustion. My GI called me a few hours ago to tell me that he wants to work me in as soon as possible because he wants to start me on Remicade. The more I think about the more scared I'm becoming. I've heard nothing but wonderful things about Remicade and I'm excited to find a medicine that finally works, but at the same time Remicade comes with a lot of symptoms. I'm entering into my senior year of high school. I want to be able to enjoy the next year, not worry about getting sick all the time. I think what I'm afraid of most is that I don't know what to expect. I know it kills the immune system. Will I always have to be cautious about who I'm around, what I touch, what environment I'm in? I know there's a risk of developing cancers and lupus. Is that a real possibility or is it an extreme circumstance? I have a long history of lupus and leukemia in my family, so I'm already at a heightened risk of developing either. I think I'm just worrying myself now. What should I expect from Remicade? Am I over thinking all of this, or are my fears real? Thank you in advance to anyone who responds!

 

[Clash]

I'm sure that someone will be along soon with information about the risks. I can say through my research and looking at the absolute risk percentage really put it into perspective for me and my son when deciding if he should start Remicade. He was also diagnosed the first of this year and has had no side effects as of yet. We are out of the loading doses and he will be having his first 8 week dose around the first of August. C is 15 so he wanted to ensure also that he could be active, play sports, camp, travel and such. We have had no problems with infections due to lowered immune system or sickness. I am sure someone with more experience will be along shortly to give you a more experienced perspective. I hope with what ever you choose you are able to start feeling better and able to enjoy your senior year!!

 

[Trysha]

Hello Kristina,
I am in thesame boat as you and currently being worked up for Remicade.
We are different in that I am a senior whereas you have your whole life ahead of you.
My GI told me that in the ten years he has been prescribing it, results have been very good,
and sometimes patients feel better in 24 hours after the dosage.
The supervision and care taken while administering the Remicade is nice to know and they can take swift action if reaction occurs while you are on site. Also the supervising nurse is on call for you.
Either we trust the GI or continue to suffer and let the Crohn's destroy our lives.
There is a Remicade Club on this forum and it may help you to take a look at other member experiences with it.
Feel better soon
Hugs and best wishes
Trysha

 

[kiny]

I know it kills the immune system.

You're saying things that are a bit extreme I feel.

It lowers TNF-alpha, it has a half life time of 2-3 weeks, and it has the ability to help the immune system in a few ways too by invoking apoptosis.

The biggest risks come from people who use 6MP/ Imuran together with Remicade, people on remicade alone have far less risks.

It's a scale you try to balance.

 

[scoutfinch]

I'm guessing your doctor won't let you go back onto Entocort? Is it because he doesn't want you on it long-term?

 

[moogie]

I've been on Remicade for 15 months now and I don't regret it one bit. ION the last 15 months I think I had about 6 weeks of problems the rest I feel fine. Compared to how I was before this is almost a miracle.

As for the risk... I'll agree when they say you just doubled your risk of cancer it certainly sounds frightening. However when your base risk is 0.005% and you double that it's not much of a risk (look up the real figures I swear they are ridiculously low.). Keep in mind that a normal people also has a risk of getting cancer. It's just life.

IN the end it all comes down to this for me at least... I prefer to have years of good health with a risk of cancer than years of pain with little risk of cancer.

When I die I die I care not. Right now I see my kids growing up and I can have fun with them.

Good luck to you

 

[chrisnsteph1022]

I've been on it for 7 months and have not gotten any infections or colds, etc. And I'm not very careful about hand washing, etc. AND I have two kids in daycare. AND I'm also on imuran. I have noticed it takes longer for cuts/scratches to heal, but no big deal. The lymphoma risk is like 4/10,000 (or is it 100,000?), compared to the normal population of 2/10,000. So yeah, it's double, but it's still miniscule. And most (all?) of those were also on imuran.

 

[sarcasmbattle]

I'll be a junior this year and I've been on Remicade (every 8 weeks) since I was 11. I was pretty scared at first but now it's so routine that it's not a problem. For me, the Remicade has been fantastic - I was really sick before I started my first infusion and felt so much better even the day after.

I'm somewhat immuno-compromised but it hasn't affected me too much. I probably get 1 or 2 more colds a year than average, but as long as I don't share food/drink with my sick friends, put on Purell, and tell everyone to cover their mouths when they cough, I'm usually ok. You won't have to spend all your time thinking about it and hopefully it will make you feel much better.

Good luck!

 

[SdN]

You have to look at your life from a different point of view now. The minute you were diagnosed with Crohn's your chances of having colon cancer increased. By controlling your disease you're actually reducing your chance of having cancer. I also wouldn't worry too much about it lowering your immune system. Since I started Remicade in March 2011 I haven't gotten sick once. I make a point to take a multi-vitamin every night, I wash my hands regularly and I've had no problems.

Be strong and know that most everyone who started Remicade went through the same thing before they started but it's a drug that can help you get your life back on track. Feel free to ask me any questions you might have. I know it's a scary new world you're faced with.

 

[Mama & Mac]

You're saying things that are a bit extreme I feel.

It lowers TNF-alpha, it has a half life time of 2-3 weeks, and it has the ability to help the immune system in a few ways too by invoking apoptosis.

The biggest risks come from people who use 6MP/ Imuran together with Remicade, people on remicade alone have far less risks.

It's a scale you try to balance.

Thank you for that..... So many people get freaked out to bad, and don't understand what the doctors are saying to them, you said it very well:thumright:

 

[Bec215]

I have a family history of various cancers, and I was really wanting to avoid going on Remicade, but after six miserable months out of remission, it was the only choice... Like others have said here, when I looked at the increased risk of cancer, the absolute numbers are still very small. And my sister is a pediatrician and says they use Remicade on kids all the time, and have amazing results - and it's considered a very low-risk drug. In fact, the doctor at the infusion center said he's got patients on it for 10 years (who started when it was prescribed "off-label" use) who've never had a single problem.

Despite my gastro wanting me to be patient and expect it could take 8-12 months to see full remission, 7 days after my first infusion I had my first pain-free day and good energy levels since February. I've since had 7 straight days without any major pain, and am eating much more varied foods again. My energy is so much better, too.

I had my second infusion a few days ago. I'm still on Imuran and tapering off Prednisone, so we'll see what happens when I go off of them, but the quality of life I have back is worth everything.

One girl I met getting an infusion the other day said it took her 12 months to go into remission, but she's been in full remission now for 18 months with not even a tiny flare... that's worth waiting for, in my book!

 

[sickofcrohns]

I was completely freaked out about going on Remicade, too, but after I failed all other treatments, it was my only option.

Put it this way -- 2 days after my first infusion, I could eat chili and curry.

I've been on it for 8.5 years now and it literally saved my life. It's not perfect, but it is way better at controlling Crohn's than anything else, and has less common and fewer side effects than prednisone by a long shot!

The major downside to it -- other than the rare but serious risks of lupus-like syndrome -- are financial. If your parents' insurance will cover it and they keep the same insurance for a few more years, you'll be cool until you're 26 (thank Obamacare). But if whatever subsequent education or job you get involved in has crappy insurance, it could become a problem then.

 

[mreyn]

My son just started Remicade and they are adding Imuran.. I'm really scared about the combination and I'm wondering if it would be best to use just the Remicade but the dr is adamant about using them both to be sure the remicade keeps working.

They also said to stay away from people who just got live vaccines like mmr, flu, or chickenpox... has anyone ever known anyone to catch any of those from someone who was vaccinated?

 

[Clash]

I don't know of anyone who has gotten sick from being around someone who just got the vaccination but it is a good precaution due to the immunosuppressant. Also make sure if your little one gets the flu shot that it is the shot, which is dead, and not the flumist nasal flu vaccine as that is the live virus.

 

[brianaclin]

I know i'm a bit late to this post. I am 19 years old and was diagnosed with Crohns disease when i was 15. I have been on Remicade since 6 months after my diagnosis and i couldn't be happier! I was nervous when first starting because of the number of side effects there is. Im my 4 years of being on Remicade I have not had one side effect except being a bit sleepy after infusions. I went through a couple years of high school on remicade and i was never sick or not able to go to school due to remicade. After my remicade treatments I feel better than ever and having normal bowel movements, have energy, have a big appetite, and feel overall great! I wouldn't be worried about Remicade! I believe it is a miracle drug that is very useful to many people and we are lucky to have such an advance drug to help us with our disease! Hope its working out for you!

 

[mreyn]

Are you also taking Imuran with it? They want to do the combo on him

 

[brianaclin]

Im not taking anything with the Remicade at the moment. The remicade is keeping me stable for now. I took Pentasa with the Remicade at the beginning.

 

[spagirl79]

I am just joining this forum and trying to get as much info as I can about Remicade. I have had Crohn's for 14 years and have been on flagyl and asacol for the last 8 yrs. I just moved and cannot find any doctor that will continue to allow me to take flagyl long term...even though it has done wonders for me and has minimal side effects. Every doctor I see wants me to try the remicade and like a lot of people on here, I am terrified!

I was on 6mp years ago and had a horrible reaction to it and had next to no white blood cells left in my body. I was in the hospital for over 2 weeks and they could not get my white cells back up for a few weeks, I had to be in a bubble. So, this is a reason I am afraid to try anything new.

I know my overall life could be better I'm sure with the new drugs but am still worried. My biggest concern is that I am trying to get pregnant for the first time. Has anyone on here gone through pregnancy while being on Remicade?

Any advice/opinions are greatly appreciated

 

[brianaclin]

I have been on remicade since I was first diagnosed with Crohn's disease almost 4 years ago, before being diagnosed I was on pentasa which didn't make me feel much better. When being introduced to remicade I was very scared being only 14 years old especially reading the side effect. I can honestly say remicade has been my miracle drug. I've had one flare up and hospitalization in the four years just being on remicade. Remicade helped me beat surgery when I was first diagnosed. I don't know about the pregnancy part of your post but of talk to your doctor about that. Remicade has been a life savor for me and such an easy process instead of remembering to take pills everyday. I would recommend remicade because its had nothing but positive effects on me. The only side effect I've ever received was drowsiness after treatment but nothing other than that. Hope I could help ease your fear of remicade. It really works wonders

 

[mreyn]

I was scared to death to put my son on Remicade and still am. However, he has only had his 3rd one yesterday and in 6 weeks he has gained 12 pounds, anemia is almost gone, labs are all good. Dr will be adding VSL #3.... so far so good.

 

[Clash]

mreyn, I'm glad your son seems to be getting good results from the Remicade and that the anemia is almost gone. Hope the VSL#3 helps your son out too!

 

[RemiRemi]

I am very scared of using remicade because I used to use 6mp. I am a teen male, 16, and i am worried that I might catch some fatal cancer. Is it even a bigger risk if you take both 6mp AND remicade at the same time than it is to be off 6mp and then remicade? I am not so sure because it's been a couple months since i last used 6mp and I am at a loss.

 

[Clash]

RemiRemi, my son, who is also 16, is on Remicade and Methotrexate(another immunosuppressant similar to 6MP). If you have any concerns about this utilizing Remicade after having been on 6MP then maybe you could write out all of your questions and concerns and discuss them with your parents and your GI.

There are concerns involved but the risk is very small and needs to be weighed against the benefit of the medication. I think it would be important for everyone involved in your treatment to be educated about the medication and comfortable with the decision.

We also have a teen forum you may want to visit and get opinions from people your age who have untilized these medications.

Remicade and MTX is working for my son right now and we are very happy that he isn't experiencing any CD symptoms but we are early on in treatment and are keeping our fingers crossed. I hope you are able to achieve remission soon!