Is it time for Remicade?

After the last colonoscopy a couple of weeks ago, my GI said that he thought that I should start thinking about Remicade.  In the meantime I had another Prometheus test to see if he could up my Azathioprine.  Nope. 

We've used up meds possible, yet I am not exactly in my worse flare ever.  In fact, I'm only going 6x/day, with about 2 formed but narrow. I have moderate left-sided this time.  Definitely better than the pancolitis last flare. In remission, I go 2x/day.  Prednisone seemed to help this time.  I did a "burst" of it.  I don't want to take it long term.  I'm already overweight, and I think that gaining more would only create more problems.

I did an Asacol challenge, as I'm allergic to Rowasa.  So far pretty good.  Headache, back and abdominal pain, and weakness and fatigue, though.  No hives, like with Rowasa, so it must have been the carrier of Rowasa that I am allergic to.  I began taking Advair 500/50 at the same time, so I'm not sure which med to attribute it to. I took 2 days off of the Asacol (still taking sulfasalazine), and the headache went away.  It returned when I continued taking the Asacol. 

I challenged Asacol as an allergy, because I am thinking of switching from Sulfasalazine, which is not pleasant for me in the summer.  Sun is not my friend when I'm on Sulfasalazine.  After 6 yrs, I'm done with it.  I'll take it if I have to though.

My GI's first choice was to up the Aza, which is now not possible.  #2 choice was to try Canasa to help with the lower end where things are the worst.  #3 choice is Remicade. 

So... my husband is a nurse and thinks that with the way I've responded to meds in the past it isn't going to be too long until I'm on Remicade anyway, and that I should bypass the Canasa and go for Remi.  GI would be okay with that too.  I'm just not sure.  Should I wait for a really nasty flare?  The cost is somewhat prohibitive for me.  I did find a RemiStart program that looks helpful for the first year.  At that point, cost won't be such a burden.  Never great though.  It would about double what I spend on UC meds anyway.  But, not taking pills all day would be wonderful.  So would remission.

What are your thoughts?

Severin, why can't you go on Remicade? You never answered that question- I posted it in your other thread. I'm curous, because the drugs you're trying, aren't they all TNF blockers? So what's the deal with no Remicade? To Dixie- sure, why not go on it now? If you plan on using it eventually, why wait?

Q: I haven't actually begun the Canasa yet.  My GI wanted to determine what part of Rowasa I was allergic to.  Because I challenged Asacol, Canasa might be a choice now.  But, the headache and other side effects are making me a bit wary. 

***However, today I am up to 12x/day.  Major D.  Serious pain.  More blood.  I can tell that it is getting worse from where the pain is moving to.  I've had it, and I'm calling in the morning to see about scheduling Remicade.

I had looked up the cost, which was quite a bit, but then realized with my insurance, it is classified as "medical" so that lowers my cost significantly.  My husband used to work for this Ins. Co.  so he gets the insurance jargon much better than I do.  In my mind, it is all medical!

Eva Lou: I guess the real reason for waivering, is that I feel like this drug is my last chance. I'm 35 years old.  What's left?  It scares me to think that if this keeps progressing, that surgery is a real possibility.  I've never wanted to consider that.  But, if I didn't have to deal with life as it now is, I guess that I could handle it.  UC is making me a stronger person.  Slowly.

Guess I'll talk to the doctor tomorrow and go from there.  This flare had started to get better, and I got my hopes up.  Today was my answer.  Too many years of not enough remission.  Too many moments and events missed. 

Does Remicade really make a difference?  What can I expect?

DixieS - Remicade is NOT your last chance. Drugs such as Humira and Abatacept are also available and have been proven to be successful. Colitis acts different for everyone, so sometimes, the most common medications aren't the right medications for us.

Smile, get the remicade and believe it will help. Today is never soon enough to be able to LIVE again

I have also followed the Remicade thing closely. From what I gather, it can take a couple of infusions to reach maximum effect, but many people get some relief from the first or second infusion.

If you'd like to get some more information, the article on Wikipedia is really good.

HI Dixie. I just started remicade and had the same problem. I've been flaring two years now and haven't been able to come off of pred without nasty reprrocutions.

The flare has been teetering for about 6 months. No blood, lots of pain, 6x a day, severe nausea. I was worried about starting remi when i was not bleeding. Did i need a heavy duty drug if i wasn't bleeding. I realized that I did becuase i just couldn't get better with other meds. I just had my third infusion and am slowly starting to feel better. I would suggest looking at your quality of life. For me remi made sense. And i still have humira and others on the horizen if this doesn't work. (But it will! Positive thinking always!!!)

Can you try the canasa until you can get on the remi? If the canasa seems to be working you can always cancel the remi. It' takes awhile to get the remi going anyway. you need blood work and an xray so you should have some time.

Good luck!

I am supposed to have my first remi infusion friday but I'm thinking about backing out, I just finished a pred cylcle and I feel great. 0-2 BM a day and since my first remicade infusion is going to cost me $1000 I'd rather just keep the cash.