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Remicade - OK I want to know everything

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Ulcerative Colitis
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Posted 5/7/2009 9:11 AM (GMT 0)
Hello ....all the way from New Zealand....Im hoping all you people out there on Remicade can help...Unfortunately I havent managed to stop flaring it for many months now....unfortunately Aza and 6mp stopped working...so we are now trialing Remicade in NZ ......I need to know everything I can before I sign up for this drug trial...so any feedback would be absolutely great

Thanks in advance
Posted 5/7/2009 1:21 PM (GMT 0)
As we say, everyone is different; but I've only had good results with Remicade. I was so sick and failed all other meds and I hoped that Remi was my chance for a somewhat normal life. Well, it worked and 4 years later it's still working. The infusions used to last about 3 1/2 to 4 hours so they could watch while infusing, now they take 1 1/2 hours. I always call it my down time; no one bothers you and can take the time to read, watch movies or nap. I don't any other meds except Remi.

Posted 5/7/2009 2:29 PM (GMT 0)
My daughter is in a pediatric drug trial for Remicade. It is working and she is in remission. There are many posts on this board for your reading pleasure, and lots of folks who have experiences with the drug. Happy reading....Use the search bar and keep in mind that everyone responds differently. For us, it is liquid gold....until it isn't. :)
Posted 5/8/2009 2:25 AM (GMT 0)
I've only had two infusions, and am having a wild time adjusting to remission and normalcy, it has been so long...
I was not afraid, just very excited!! When I learned my coverage was approved, I cried a little.
Posted 5/8/2009 3:34 AM (GMT 0)
I know just what you are saying Peety; it took my brain and colon to realize that I didn't need to "run" to the bathroom anymore...that I could actually pass gas without having an accident. Amazing feeling, huh? Glad to know you are experiencing it too. Good for YOU!
Posted 5/8/2009 3:47 PM (GMT 0)
That is an amazing feeling! Long forgotten...
I was in the store and felt like I could go...but looked around a little more, checked out and made it home, no problem. Wow.
Posted 5/8/2009 3:53 PM (GMT 0)
Yay, Peety! Really, I'm thrilled for you! :) I can't imagine what you've gone through.

I guess part of the reason I'm so happy for you is because I see myself as being a bit like you. I'm in ag research, have a PhD (similar to your JD), and am hoping to get into a university professorship pretty soon. Even though being an ag professor/researcher is a far cry from being a lawyer, they are still both male dominated fields. I sometimes feel I've got to be extra good just to prove that being female isn't a detriment.
Posted 5/9/2009 4:58 AM (GMT 0)
I have had 2 infusions and have felt better after each. Right now I'm feeling awful though, probably due to concurrent prednisone tapering (I've been on it steadily since December and I'm sure I'm dependent now). My next infusion is next week and I'm looking forward to it. So far I haven't had any really noticeable side effects (not compared to the awful prednisone anyways), although I take it with Benadryl so I'm pretty wiped out after.
Posted 5/9/2009 9:03 AM (GMT 0)
I just had my 2nd infusion and I beilieve the first one put me in remmission since all other meds including 40mg of pred
was not working.. It certainly has its risks but most feel its a better option than surgery when all else fails.
I personally got a headache and backache the day of my 2nd infusion Also today I have a 102.5 fever and the chills and I had my infusion on Wednesdy.
Not sure if its related or just because I'm on prednisone.
Posted 5/9/2009 3:44 PM (GMT 0)
Hi. I just registered because I have questions about Remicade. My mother is going to get her first infusion today. She's 83 and got UC last year. The doctors did another colonectomy a couple of days ago and found that she is still very inflamed to their surprise. She's been on Prednisone and Colazol since February. (I don't know if I'm spelling everything right.) Does anybody have suggestions for lessening the risk of side effects and what we should expect with the treatment?
Posted 5/9/2009 4:15 PM (GMT 0)
Hi Mama's girl and welcome to HealingWell! I think the most concern I'd have with your Mom is make sure she is very hydrated; something I should have mentioned in my other posts; it's very important to drink up the water the day of your infusion to make sure your veins are plump. The other thing is that I'd check with her doc (or her) and ask if she has any reactions to Claritin or Zyrtec if they are going to give her an antihistamine before she begins the infusion. Benedryl sometimes makes people groggy or sleepy, so it might be best to give her something that won't make her feel like that. Good luck to her and I wish her well.
Posted 5/9/2009 4:27 PM (GMT 0)
I want to know everything about Remicade too.  Jusst got back from seeing a Super GI at Johns Hopkins.  She has recommended Remicade because I am Prednisone dependant (been on it since July 2008).  Currently I am taking 10 mg of Prednisone a day plus 150 mg 6 MP and Lariadel (sp?)  Will I have to complete the Prednisone taper before starting Remicade?  Will I continue the 6 MP?  Since I am on Medicare, how much will this stuff cost me out of pocket?  I have heard that it is awfully expensive.  What else should i know about this stuff?
Posted 5/9/2009 8:32 PM (GMT 0)
I've been on Remicade and in remission for 3 years. My last colonoscopy showed a healed colon with no inflammation. I've had no complications or side effects other than mild tiredness the day after my infusion. I've had surgery while on Remi with no problems. I have no increased infections at all.

Most doctors will discontinue immunosuppressants such as 6-MP when starting Remicade because an increase in the development of lymphomas has been seen in people taking both. While the rate is still low, they don't want to take the chance. You can start Remi while you're still tapering Prednisone.

I can't answer your questions about Medicare coverage, but your doctor's office should have someone to check on this. If not, talk to both Medicare and any other health insurer you have about coverage.
Posted 5/9/2009 8:36 PM (GMT 0)
I was still finishing prednisone taper when I started, so that's OK. Did your doc at Hopkins talk about Humira? I would have preferred Humira shots but they haven't had it approved yet for UC. I think I remember that they'll cover it under Medicare. Or maybe that was Tricare (military)...

Yep, fruitgirl, many times I am the only woman in the room. I have learned to think like and carry myself like a man, and I dress in good quality, classic clothes. In fact, I think I scare some people! But I also smile a lot. Because I have a great job. I work in politics, and fortunately most women politicians are viewed as equals (once they've made it that far).

How did your interview(s) go? Let us know in a new thread, maybe.
Posted 5/10/2009 11:20 AM (GMT 0)
Thanks everyone..keep the comments coming through.....
Posted 5/10/2009 9:20 PM (GMT 0)

Judilyn said...
I've been on Remicade and in remission for 3 years. My last colonoscopy showed a healed colon with no inflammation. I've had no complications or side effects other than mild tiredness the day after my infusion. I've had surgery while on Remi with no problems. I have no increased infections at all.

Most doctors will discontinue immunosuppressants such as 6-MP when starting Remicade because an increase in the development of lymphomas has been seen in people taking both. While the rate is still low, they don't want to take the chance. You can start Remi while you're still tapering Prednisone.

I can't answer your questions about Medicare coverage, but your doctor's office should have someone to check on this. If not, talk to both Medicare and any other health insurer you have about coverage.

Thanks for the information.  It was helpful. 
Will you continue to take the Remicade indefinitely at the same dosage and frequency? 

Posted 5/10/2009 10:00 PM (GMT 0)
My 2 cents: don't get frustrated if it doesn't work right away and find the right cocktail of meds. It took me 4-5 infusions and the right combo of rectal meds to finally reach remission. I almost had surgery, but luckily my c-scope showed I was healed except for the last few cm.

The only complaint I have is that Remicade is preventing my body from healing my cold sores. I'm pretty sure I've never had cold sores before, but now they're almost continuous even while on anti-virals. And I'm also experiencing hair loss, which could be from any of my meds. But other than that, I'm happy to use Remicade to keep me in remission!
Posted 5/11/2009 12:50 AM (GMT 0)
How is the infusion administered?
Posted 5/11/2009 1:51 AM (GMT 0)
An IV, she sticks the needle in the back of my hand and it takes more than two hours to finish the drip.
Using my hand seems to work well, it doesn't even leave a mark.
Posted 5/11/2009 1:42 PM (GMT 0)
Thanks Peety
Posted 5/11/2009 2:37 PM (GMT 0)
Hey Peety; I too use my hand for the IV. The nurses always want to put it in other areas, but I tell them that I bruise too easily on my forearms, etc. Seems like my right hand has the best veins and I don't have a problem with bruising.

Posted 5/13/2009 3:25 PM (GMT 0)
When I started Remicade 4 years ago, I really didn't see much improvement until the 5th infusion. Then the healing seemed to kick in. I did find that it was very difficult to stretch to the 8 weeks, so it was reduced to 6 weeks, then 5 and now 4. Although I do have a reaction during the infusion, the nurse and I have worked out a plan for extra medication just before the reaction hits, and for the most part the infusion runs smoothly. That day and the next I am very tired and just give in and take naps. That's why I get my infusions Friday afternoon. I have the weekend to recuperate.

Good luck
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