A few questions

[corgiforlife]

a few questions

I had my 2nd colonoscopy today and I guess the dr didn't like what he found. Said I still had sever inflammation and ulcers in my colon and lower small intestine. He wants me to start Remicade and refered me to the dr that does the infusions. As of right now, I don't have insurance to cover this. I will be starting a new job next week, but have a 90 day trial period before I would qualify for insurance.
If I find some way to cover this, (hopefully payments or something) what can I expect as far as the infusion? how long does it take? will I be sick after? will I be able to work or is this something I need a day off for? I think I had more, but I can't remember right now. Thanks in advance!

 

[Jessi]

Remicade seems very scary, but you can hopefully relax a little with this information. First of all, the cost is scary. I don't have insurance either, but asked my doctor for an application for Johnson & Johnson Patient Assistance. J & J is paying for my Remi infusions 100%! And the supply pack to go along with it! It is shipped to my doctor each time. All I have to do is pick it up from my clinic and bring it home to my fridge. I have home care, and my nurse does the infusion for me. (If you have insurance, but still need help, Remi-Start is the application to fill out instead.)

The infusion takes a couple hours. Three hours for the 1st one, because doing it slowly, they can watch for allergic reactions, just in case. I plan on a movie, a nap, or a good book. It makes me have to pee a lot, so plan on that being a possibility during the infusion, too.

Afterwards, I am wiped out for a few days. It makes many people very tired, so plan on Fridays if you can. A lot of people take the weekend to sleep it off. You'll most likely be feeling fabulous by Monday. Also I get lower abdominal cramping for a couple days right after the Remi, but it seems to be lessening with each dose. Everybody is different, though.

Good luck, and let us know if you have more questions.

:hug:

 

[muppet]

I'm not a doctor and your doctor may have very good reasons for jumping straight to Remicade, but it's the big guns, which in my opinion is putting the cart before the horse. It seems that Remicade is getting more and more of a reputation as "miracle drug" but the fact is that it's incredibly expensive and carries some significant risks.

I'd get a second opinion, if your insurance allows, before starting it up. If Remicade will be financially difficult then you probably can't afford NOT to get a second opinion. There are lower cost drugs out there, like Colazal, Lialda, asulfasalazine, pentasa, 6mp, Imuran, and more that could possibly work for you, probably combined with some prednisone to get you started on your remission. Definitely talk to your doc about the other options and I can't stress enough the value of another GI's opinion.

Good luck to you! Remicade works very well for many patients but it's not the only show in town. Even without the cost issue I'd be hesitant to use it as my FIRST Crohn's drug. I consider it a last resort second only to surgery.

Standard "I am not a doctor" disclaimer goes here.

 

[corgiforlife]

Jessi- thank you for the info! I will call monday about the johnson and johnson help.
muppet- I have been on other medications. I was started on Pentasa which made me throw up. Asacol didn't have the effect my dr wanted and now I'm on Imuran. The whole time I've also been on prednisone. My dr doesn't like the fact that I'm passing so much mucous and with the 2nd scope, saw that nothing is getting better and that's why he is going for remicade.

 

[muppet]

Ah, OK. I should have looked for your history. I didn't notice you had 32 posts already. Sorry!

 

[scl]

I was started on Remicade shortly after diagnosis. My Crohn's was recongized when I had an obstruction. Further tests showed a fistula. My doctor recommended Remicade because it is particularly helpful in healing fistulas.

Ten days after my first dose, a followup CT scan showed the inflammation in my small intestine was resolved as was the fistula. The scan still showed a narrowing, although greatly improved.

I have had no side effects during or after infusion. I do not premedicate. I qualified for the Remicade rebate program so my first four infusions cost me $50 and the next four will cost $150.

Lymphoma is a side effects when Remicade is combined with other drugs whose names I can't remember.