New to Crohns- No Symptoms- Remicade Use and Costs?

[steelek5]

Hello Everyone!!!

I have been diagnosed with Crohns for about four months now. It is still hard for me to beleive that I have it as I have NO symptoms. Luckily they have caught it early enough.

I have been on endocort for three months and then start IMURAN. After two week on Imuran I had a horrible allergic reaction to it that basically put me out for over five days. Fever, Vomiting, Joint Pain, Stiff Neck. If I wouldn't have noticed that it was the drug causing it I would have been in the hosipal in the next day or so for sure. After this reaction they put me on Remicade. I had a CT Scan this AM (supposedly normal to see if I can be on the drug?) and I start the infusion in the next few weeks. Somewhat nervous about the expense. I have decent healtcare coverage but it seems like its a high expense (all of my out of pocket up front) What are your thoughs on this.... is this worth the extra cost vs a injection form like Humira? My doctor wants me on Remicade but said there are two shot type medications taht we could tak if the cost was to much. What are thoughts out there? Is this drug worth the additional costs?

Also, I will have to be on this the rest of my life.... That is so hard to beleive.... how do i have ulcers and inflamation through out my entire small intestine but not have symptoms? Have I had symptioms my entire life and just don't know what they are? The reason I was diagnosed was becuase of some blood in about 8 stools over two months.... had the colonoscophy and boom thats what I have. Now I have an a small bowel follow through, M2A endocopsy capsule, CT scan, chest X rays, steriods, the Imuran... all along not sure why becuase no symptoms... I am also having a hard time quiting smoking because I have no side effects. Someone tell you that you have to quit, you have Crohns and it increases side effects, can make the crohns worse, and cause cancers with this medicine. But its so hard not seeing a side effect and taking the doctors word for it......

Whats a flare up.... how would i know if I had one?

CONFUSED.... thanks to anyone that is just even listening (reading this) any advice or reassurance would be great!!!

Living through this in MICHIGAN :ywow:

 

[chrisnsteph1022]

Wow, no symptoms? It must be a mild case (for now-mine started fairly mild and progressed). I would definitely recommend staying on some sort of treatment, but Remicade is the 'big guns' of treatments. There are much less mild drugs, such as Asacol, Apriso, Pentasa. I would ask about those. The other two shot meds are Humira and Cimzia. Those, as well as Remicade, are anti-TNFs and are typically used in more severe cases.

I feel for you on the smoking. I'm working on quitting (down from a full pack to half a pack a day!). And I've had Crohn's for 8 years. I should've quit long ago. it's hard!

 

[steelek5]

Its nice to hear that I am not the only one having a difficult time quitting. I thought the same thing... I can't beleive Remicade already... what if it gets worse.... Will we have a fall back drug...
You would think I have a mild case of Crohns with no symptoms but I think thats the case... she has used the work CRONIC multiple times and severe. They call me difficult because I have no symptoms we have no way to tell when i have a flare up.... But I have inflamation through out my entire small intestine and ulcers.... I think they want to hit it hard now in hopes that it will never get worse...

I mean sometimes I will have cramps when I need to use the bathroom but nothing more, i use it maybe 1 to 2 times a day sometimes not even once a day. I have felt more nausuas lately....

Have you ever tried chantex?

 

[xJillx]

Hi and welcome! I can't believe you have no symptoms, but yet have disease bad enough to warrant Remicade. I guess consider yourself lucky! However, it will be tough to know if medication is working being that you always feel normal. You'll need to have regular testings, I suppose.

I can understand your concern about the cost of Remicade. However, if your inflammation is bad, Remicade is needed to get it under control. I sure hope it does the trick for you and you remain symptom free!

 

[Jessi]

Hi and welcome, Steele. I'm on Remicade and understand the frustration behind the cost. There is help though. Ask your doctor for a RemiStart application. It covers most or all of what your insurance won't cover. Or you could download the application from this website.

http://www.janssenaccessone.com/pages/remicade/patientassist/intro.jsp

Also, I'm really lad that you want to quit smoking! Wanting to is half the battle! An awesome new thread has been started to offer each other support for this very thing. I recommend you join in.

http://www.crohnsforum.com/showthread.php?t=28137

Also, have you heard of the electronic cigarette? It's just water vapor - no tar, but still satisfies the craving. Check it out here.

http://en.wikipedia.org/wiki/Electronic_cigarette

Good luck! :hug:

 

[steelek5]

Thanks so much Jessi! i just found out about the Remistart program and it seems that it will work perfect for me....

Are you on Remicade? Do you know if once you start you can ever stop? I think I am going to get a second opinion..... Or does this sound bad enough to need it... in your opinion?
No symptoms but after a mouth to anus capsule it found that I had inflammation and ulcers through out my entire small intestine... Chrisnsteph what do you think?

 

[Jessi]

I am on Remicade. I was a very severe case, and it was much of my own choice to go on it. It is a big step, so I understand why you're apprehensive. If your body responds well to it, you could be on it for life. But as soon as your body starts to reject it, you would stop immediately and find an alternative. But, yes, medication is for life.
Thanks to Remicade, I am now in complete remission, but I continue to get infusions for maintenance. I hope that helps you.
There are other options, though. Some doctors prefer to start with the "big guns" but remember that you do have a say. It's your body.
Whatever decision you make, I hope it works for you. :hug:

 

[steelek5]

Do you mind if I ask where your Crohns is and what you all had, inflammation, blockages, ulcers.....?

 

[Jessi]

I have UC, not Crohn's. Mine is my entire colon - from cecum to rectum. Inflammation throughout, ulcers EVERYWHERE!

(Currently in remission, though.)

 

[Carmella]

Hi Steelek5,

I can see why you're confused! No symptoms? It's my understanding that some doctors are having success with a "top-down" approach. Typically, one has a flare-up, they go on antibiotics, prednisone - then work they way up to the "big guns" Over time the patient's health declines dramatically. So the top-down approach puts you in remission right away - then you may or may not move down the line. (instead of up the line)

I'm a smoker too! I've been trying to quit for a long time. I'm on the patch and sneak one in every now and again. It's my personal experience that yes, smoking (nicotine) contributes to the severity of my flare ups. I won't give up though! I'm on step 3!

So, about not having symptoms - may I ask what brought you to the DR in the first place? How's your bloodwork?

 

[steelek5]

Well my stomach was okay, nothing out of the ordinary. I would eat a fiber one bar and not feel the best, just thought it was the fiber.... Then in April I say a good amount of blood in my stool. It happened about five times straight so I went to the doc. They said it was probably internal hemroids but watch it. The one month later it happened again for three stools so I went back to my family doctor and they ordered a colonoscopy. During that they found inflammation and ulcers in my illium only and took a biopsy... That diagnosed it, no questions asked... Crohns.

I did a M2A and it showed the inflammation and ulcers through out the entie small intestine. i tried Imuran but had a bad medical reaction and was sick for five days. now it is remicade. She talked to me about the top down approach and told me the same thing... they think that if they treat it hard now it might never progress and I will hopefully continue to be symptom free and not have surgery/lose some intestine

Its weird though, i am fairly regular, once a day but normally ever other day. Dont get sick much, stomach doesn't bother me much, i might cramp every fourth stool...

Based on what others are saying this can be a horrible/hard to live with disease..

Thank you so much for your post. it makes me feel better with what you have said. I think I get my first treatment next week... still thinking about getting a second opinion but not sure. I really like my doctor. I wonder if I do the first treatment and then get a second opinion if it iwll be to late to quite the remicade. It might take a good two months to get into a specialist with no referral.....