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Getting cold feet about my first Remicade infusion tomorrow!!!

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Posted 11/5/2013 5:21 AM (GMT 0)
Hey everybody!!! hope all is well!! Anyways im getting my first Remicade infusion tomorrow and im starting to get nervous about the whole thing + starting to question if i even need it!! I was diagnosed with moderate/severe pan-colitis around september 1st and since then have been on prednisone. I started at 45mg and am now tapered down to 15mg. The taper has gone very smoothly and at the moment i really don't suffer from any of the terrible UC symptoms like urgency , blood , or pain that causes distress. My stools have become looser and i do have a bit of an uncomfortable feeling on the left side sometimes but thats about it. Im just wondering if its at all possible that maybe pred alone can put me into remission and maybe i can taper off without any real negative symptoms returning? Is it possible? I've also been eating pretty much anything without any consequences at all. I guess im just scared of going on something as strong as Remicade when i don't feel sick. Whose to say that with the probiotics and the addition of some psyllium husk to bulk up my stools i wont be able to stay in remission? Sigh... did my GI jump the gun?
someone pls give me advice!!! confused
Posted 11/5/2013 5:25 AM (GMT 0)
Have you tried any if the other less frightening drugs first? I would give the less risky drugs a chance but you need to start then as you taper off of pred. My two cents. You can always do that remi later.
Posted 11/5/2013 5:35 AM (GMT 0)
No i haven't been on anything other than prednisone and thats what i've been thinking as well. Its kinda strange that i'm going straight to something as strong as Remicade but now that i think of it i was pretty adamant about getting off the pred as soon as possible when i saw my GI. It could be that she just strongly believes that Remicade will 100% do that for me but still...
Posted 11/5/2013 6:09 AM (GMT 0)
Try Asacol or another Mesalamine first! You may not even need something as strong as all of that. I can't figure out why your doc didn't have you on something else already.

I was in really bad shape, basically having diarrhea nonstop for months. My colonoscopy showed I had pancolitis and he started me out at only 5 mg of Prednisone and 12 tabs of Asacol 400 mg a day. And it worked! I tapered off the Prednisone almost immediately and I responded well to the Asacol. I would think something like that would be the first course of action and then the more heavy duty meds if that didn't take care of it.
Posted 11/5/2013 12:10 PM (GMT 0)
It is not unusual for a doctor to pick a strong medicine that works first. I went straight to azathioprine and Remicade after my diagnosis, which was the same as yours. You feel ok now because you're on steroids, but that is not a long term solution. Moderate pancolitis is nothing to brush off. Your colon is in bad shape and needs help!

Remicade works really well for a lot of people. I wish I would not have spent the year before diagnosis 'piddling around' with lesser drugs!
Posted 11/5/2013 2:38 PM (GMT 0)
I really don't like the idea of going on Remicade so early but there are some stats that seem to show that the longer you let UC go the harder and harder it gets to treat so getting control of it early on could maybe be a huge advantage. Prednisone only works while you take it. As soon as you taper down or get off your symptoms will return unless you have a successful maintenance strategy in place such as oral and rectal mesalamines such as Asacol. I think your doctor is intelligent enough to know that prednisone is not a cure and you cannot take it long term and since you indicated that you wanted off ASAP he wanted to go down the Remicade route. I still don't know why your doctor didn't put you on the oral and rectal mesalamines right away while doing pred. You are right to be concerned about doing Remicade so early but I'm not going to say that it is a total mistake at this point.
Posted 11/5/2013 6:25 PM (GMT 0)
There is growing science that hitting it hard early decreases the time your colon is inflamed and decreases the likihood of uncontrolled flares or even colon cancer( from long term simmering inflammation). We took a slightly longer route to Remi, after giving the 6mp with 5ASA's a chance. I heard the guru of UC say at a conference that if Remi was cheap, it would be the first line of defense, not the last. Its safety profile wins over steroids or long term chronic pain/ inflammation. Of course there are other concerns added...but all trade offs you have to carefully weigh.
Posted 11/5/2013 6:40 PM (GMT 0)
Find a new GI.

There's this thing called a treatment ladder to ensure that biologics are a last resort treatment. These drugs are not a joke.

In the meantime, try doing diet modifications to ease your symptoms. Focus on eating clean and a paleo-ish diet.
Posted 11/5/2013 6:58 PM (GMT 0)
Katmom, where did you hear that remi would be the first line of defense if it was cheaper? I would feel much better about starting it if I heard that. I'm just as anxious about starting it.
Posted 11/5/2013 7:01 PM (GMT 0)
Actually, even though it's counterintuitive, Remi has fewer side effects than any of the drugs possibly excepting the mesalamines. Many major centers are already using biologics before the immunosuppressive drugs because the success rate is higher and the complication rate lower.
Posted 11/5/2013 7:06 PM (GMT 0)
I don't know where she heard that either but it actually sounds reasonable to me. If I had to guess I think they would mean first line treatment after trying the 5ASA's, meaning use Remi before steroids, Imuran, or 6MP or the other biologics. My GI has never been a believer in steroids (for good reason) but has talked about Imuran. Remi is expensive and these poor doctors have to not only think about treatment plans but they also have to consider insurance issues as well as possible out of pocket expenses for their patients. Remicade can also be very inconvenient. If all of these things were eliminated I could see Remi as a second line therapy, just behind the 5ASA's.
Posted 11/5/2013 7:10 PM (GMT 0)
Joshlieb, certainly some here are afraid of remicade and I think the above illistrates that haha. I'm on it and it works. I think your GI is the best judge of how serious your uc is, he has seen first hand the inlammation and extent of it, and I would hold that in much higher regard then what you hear here from anonymous people on the internet.

Remicade is reality quick acting, moreso than a lot of other uc drugs.
Posted 11/6/2013 3:07 AM (GMT 0)
Joshlieb,

I think you should really consider Remicade.  When I was first diagnosed several years ago my GI brought up Remicade. I read all about it and said no.  Now, after trying just about everything (currently on 125mg of 6MP)and being in the hospital at least 4 times I wish I tried Remicade early on.

I'm having a ct scan tomorrow because it feels like I have a baseball in my upper right stomach. Going to see my Gi thursday about going on Remicade.

Hope this helps.

Greg

Posted 11/6/2013 3:26 AM (GMT 0)
Stealth Guardian is incorrect. The "treatment ladder" is just one approach, it is not the only approach and certainly not the only good approach. Just as many doctors practice a "top down" strategy.

If you're having symptoms at 15 mg of prednisone, it is highly unlikely that you will be able to achieve remission with only a prednisone taper. If you're still sick WITH some prednisone, why would you expect to go into remission without prednisone?

Don't be nervous about trying Remicade. As long as you've had your TB test and the necessary precautions, it is very safe and often extremely effective. It would be much scarier and worse for your health to stay on prednisone for too long.
Posted 11/6/2013 5:18 AM (GMT 0)
I heard it from Dr Stephen Hanauer's mouth at the CCFA conference last year in Chicago. He is the chief of the U of C inflammatory disease center with a bigger title than I can recall. I go to the conference every year, as this is my daughters practice when she is home from college. I would feel terrible to put words in his mouth, so if I am wrong that it was him and not his partner,I promise to correct myself in the am.
Posted 11/6/2013 11:26 AM (GMT 0)
Katmom, thank you. Makes me feel better about starting it.
Posted 11/12/2013 12:11 AM (GMT 0)
Joshlieb, did you ever get your Remicade infusion? I am scheduled to get mine next week and I am feeling the same way you did. I have had way too much time to research all of the bad side effects.
Posted 11/12/2013 12:31 AM (GMT 0)
I took remicaid as a last resort. I was told about a lot of the side effects, but when you are desperate, you just might do anything. It worked for a short time, but my doctor kept me on it for three years before taking me off of it. You might want to look into what remicaid is actually made of and what are all of the side effects before you take an infusion. Remicade is made with mice genes. Once you get an infusion of remicaid, the mice genes never leave your body. If I had looked into all of it before I took the remicaid, I would have never taken it.
Posted 11/12/2013 12:35 AM (GMT 0)
On the other hand, for some of us it gave our lives back. Everyone is different.

And I haven't started squeaking or grown whiskers yet!
Posted 11/12/2013 12:45 AM (GMT 0)
That is true judy and yes, we are all different. Some have had good results with remicaid and others, not so much. But the FDA allows a lot of drugs to pass without a lot of test if there is enough money involved. All I am saying is, if you you care about what goes into your body and what the side effects of taking a drug might be years down the road, make sure you check it out before you try it. If you don't care about what goes into your body, give it a shot. It might help, but it might not. I was also warned before I took it that if I tried to have children after I had taken remicaid, the child might have genetic problems. Just something to think about.
Posted 11/12/2013 12:49 AM (GMT 0)
Judy2 & Searchin4acure, as long as those mice genes don't cause any serious side effects, I will be happy to get some relief. That black box warning is really alarming though. Its getting close to infusion time and I am really starting to worry. HELP calm me again.
Posted 11/12/2013 3:07 AM (GMT 0)
I hesitate to come on too strong recommending a drug that has potentially serious consequences.The mouse protein it is derived from can cause a reaction, but I have never heard it stays "with" you, nor have I heard about reproductive genetic issues. It takes a zillion years to get FDA approval for pregnancy. A top GI at Mayo that specialized in high risk pregnancy said that she keeps her patients on it(healthy mother, healthy baby, just no early baby vaccines).
Remicade was liquid gold for my daughter. 4 years of priceless remission. No infusion issues. Higher rate of small infections tho.
Your call...you know if you can manage this some other way, or if you can look surgery in the eye. We we not there at the time, she was only 16.
Posted 11/12/2013 5:07 AM (GMT 0)
Hey all !! sorry i didn't follow up sooner!! Anyways i ended up going through with the Remicade and i have no regrets. I have accepted the fact that sometimes you have to take risks if you want the reward and after reading about all the struggles that people have had tapering pred without a correct maintenance med i believe i made the right choice. Yes , there are other options out there other than Remicade for maintenance, but it seems like that's what my GI wanted and i trust that she knows what is best regarding my situation.

As for the results?? Well since my infusion i have felt pretty good. I had no real side effects other than fatigue on the day of the infusion and a dry throat the day after which went away the following day. Im staying the course with regards to my pred taper and have successfully reached 10mg although admittedly im very scared and nervous that uc symptoms might pop back up. My Second infusion is a week from tomorrow and all i can do at this point is hope that ill be able to get off pred smoothly and back to my regular life through this drug. Thanks for all the replies!!!

Also has anyone here tapered pred while starting Remicade?? Do you have any advice?
Posted 11/12/2013 12:50 PM (GMT 0)
my pred taper (60mg down) went very smoothly once on Remicade. still took time of course and yes I was worried to trust the remicade until off pred.. but honestly.. no issues what so ever...
for me though. pred wasn't even really working but i was still worried.. what if..

I'd say dont' drop more pred though til after your next infusion. the last 10mg of pred are pretty vital if it's working for you so wait til you have a good amoutn of remi in you first.. (IMO)

good luck, hope you can have long remission..
Posted 11/12/2013 2:33 PM (GMT 0)
Just saw this post -- so I'm a little late chiming in. I started Remi many years ago before it was even approved for UC. The doctor I had at the time believed that Remi was the cutting edge therapy and that he was going to try it from the beginning and then move down to maintenance meds. I was on Remi for a little over five years and am now on maintenance meds. So, it can work.

Good to hear you are feeling better from the Remi. Take care and keep us updated. 

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