Remicade success stories....

Hello all... Well in an attempt to end my almost year long flare I'm starting Remicade next week. I'm hoping some people that are currently on Remi can share some success or failure stories with me. ie; how long did it take to work, how did the actual infusions go, what side effects did you experience if any....

The only thing I'm afraid of is that my current flare only seems to be limited to my rectum. I don't know if this makes any difference in the Remicade or not, does Remicade just treat all UC and not really matter where it is? Before anyone suggests it I have tried all forms of rectal meds and none have worked. I had a second opinion with another GI who simply said I have IBS. If he had half a clue he would understand that IBS doesn't make you bleed and drop about 40 pounds!! (sorry for the rant)

I started flaring in the summer of 2001 and was diagnosed in November of that year. In a full, debilitating flare (25+ trips a day, constant pain, bleeding, mucus, etc.) which was only slightly eased by Colazal, Imuran, Prednisone and Entocort (separately and together.) I started Remicade in March, 2006. By the third infusion in April I was in a pretty good remission, and it kept getting better. I've been in remission ever since. I can eat whatever I want within reason and pretty much not worry about having UC.

My infusions take about three hours including prep time and staying a few minutes after to be sure there's no reaction. Then I either go back to work or go home, depending upon the time of day. I've had no side effects other than mild tiredness the day of the infusion. Oh, and a significant reduction in the amount of reading I get done in the bathroom!

For me, I go in and get weighed. Then the nurse takes my temperature, pulse and blood pressure and asks about any illnesses since my last infusion. After that, she gives me a Zyrtec (to help prevent allergic problems) and Tylenol (to help prevent any fever reactions) then starts the IV. She then mixes my infusion and hangs it. They check my blood pressure and pulse a couple more times during the infusion.

I hope it works well for you also.

thank you all for the replies. I get my first infusion on thursday. I'm a little excited and nervous but I'm really hoping for good results. I realy want to get back to work and a more normal life.

I just had my 2nd infusion, feel great, no side effects and have gotten off all steroids.

Its would be a relaxing 2-3 hours every time but my nurse is annoying.  NEver shuts up and take my vitals every 15 minutes.

I've been on Remicade for over a year now and it is working well for me. I've had a few minor flares but nothing like I had a few years ago. It has improved my quality of life very much! I had been put on everything, including Prednisone and 6MP before they went to Remicade. I get infused every six weeks. While getting my infusion I nap and/or read so it isn't bad at all. They give me Benadryl during the infusion so I always go home afterwards. I'm usually tired that day but fine the following day.

My doc had me on Remicade and Imuran too, but called and asked me to stop the Imuran because he was worried about the combo of Imuran and Remi causing lymphoma. There is a slight chance but he wanted to take me off of it just in case. And, I stopped it cold turkey and haven't had any problems at all. I too had immediate results with the Remi...amazing huh? I've been on it for three years now with not a problem.

I'm doing a lot better on the Remicade than not -- it let me get off the Prednisone, although not till about 10 months after my first infusion. I am still not feeling as good as I'd like, but a lot better than before I tried Remicade. I have 2-5 BMs in the morning (increases as I get further away from my last infusion), after infusions I don't feel queasy for the first couple of hours of the day. I am now needing infusions at 5-6 week intervals. I still feel quite fatigued and need to nap most days. And I have recently been diagnosed with mild arthritis in my spine after complaining about lower back pain and getting x-rays. Was told it could be due to UC. Am waiting for Humira to be approved for UC as I think the more frequent dosing will work better for me.
Meesh

I have been on Remicade for 2 and 1/2 years and I love it. I am also on Imuran and the doctor wants to discuss taking me off one or both of the medications in September and see how long he can keep me in remission. He cant put me on anything like sulfasalazine, because we found out I was allergic to it. But it is great to know I am not having any problems.

I'm thankful to hear all the good news about Remicade. As I asked before, how much do the infusions cost. My son has no insurance and will have to pay for this himself. He is willing as long as it may help him. Thanks

Pickle; I drink coffee but it doesn't irritate me. You'll probably have to test the waters and then decide what will work for you. If I get a rumbly tummy from something I'll just stay away from it.

Hi Cra43,

I had the same reaction when I was told the cost of remicade but it does depend on the dosage that your son needs. My treatments cost 4000.00 dollars per visit

it is a great deal of money ( I only have to pay 15% of due to hubby's insurance) whicch is still a large enough amount of money to be paying out for meds but it sure does work better than anything I've tried so far and I have been on quite a few meds to get this thing under control.

If your son is covered under an insurance plan you can or the remicade people can see if he would be aproved for the treatments.


Carol,
Coffee seems to be fine for me as well but soda (anything carbonated) makes my tummy rumble and I do feel a bit nausious so maybe i will ust that rule of thumb as well.

thanks much

Pickle

dear cra43

That is so unfair, how do they expect people to get themselves healthy if there is no financial help out there for them.
i wish your son all the best and hopefully he can find something that works as well as remicade has for me.

Best of luck to you both

Pickle

Love Remicade. I would definitely suggest you look into it. I didn't even have to do the normal treatment schedule because it jump started me into remission the first time and the other times I had infusions it stopped what I think could have been the beginning stages of a flare. The only thing about Remicade is that you have to go to a place an have it administered unless your hospital will do it as an outpatient or something.