Remicade

[bk1579]

remicade

Hello, I will be starting remicade soon and was wondering what to expect...I know everyone is different and that the effects will be different from person to person...I actually have UC instead of crohns (so far thats what it looks like) and I would think the treatment may be a little different but I'm not sure...He says I'll have one infusion, then another after two weeks and then one more in six weeks ( I think)...What happens after the third one...Is that it? Do I not have any more infusions until I flare again? I asked my dr., but I asked so many questions about it, I can't remember all the answers...I've heard of some allergic reactions to it also and was wondering what everyone elses experience was like...Thanks for any info you have...

 

[soupdragon69]

Hi BK,

I was told I might feel very tired for a few days then really pick up energy wise after that - its what they were hoping anyway! I have had 3 infusions now just as you describe above and felt as though things were changing after the second but couldnt put my finger on what. Since the third I feel loads better. Havent had any probs with reactions though like you am aware they can happen.

Had to wait for my cons to decide whether I continue the infusions or not. He has now decided because I responded well I am to continue the infusions every 8wks for the next year. I see my cons 24th Sept and my next remicade infusion is 4th Sept so will be able to tell him how I am after it too as they like to wait a couple of weeks to see what your response is.

Keep asking questions and keep at your team. They will understand you cant take everything in at once BK and wont have a problem going over things again and again with you. YOU need to be happy with what is going on and have an understanding WHY they choose a particular path for you.

You might also find it easier to post on the treatment threads for stuff like this as folk may miss it here.

Hope this helps....

 

[bk1579]

Thanks soupdragon for the response...I realized where I posted it after it was already done...I meant to put it in the treatment thread...Ooops..

 

[Kev]

Hey BK.. Haven't gone on Remicade (can't afford it, but if metho don't work and my GI is able to get me into either a study, or compassionate plan from manufactuer, it may be in my future).. BUT.. I was told by GI that if I went on remicade, and it did the job, then I would remain on it indefinitely... unless a problem developed with it. I believe the regimen would start off with every 4 weeks initially, then switch to 6 wks, then to 8... with intermittent blood tests to determine how the rest of my body was handling the treatment. that apparently is a pretty typical IBD remicade scenario. It may be different for some patients, its a case of this illness being so patient specific, that everyone is a little different. I'd suspect that you'll hear any number of variations on it from others on this site who have gone that route. as for asking questions, don't be hesitant to ask your docs any number of questions... And to help, don't go to see your doc empty handed. A notebook with any questions you want to ask, and room for their answers, helps.
Or take someone along with you to be the 'bad' cop and ask all the tuff questions.
It's your life, its' your body, you deserve to know what the future may hold, okay?

 

[DanSJVDavis]

Had a Remicade treatment back when they kept telling people that you could only have one and then you couldn't get another one. It was in three doses like you say. I worked for the hospital I was getting it from so I got to look up my own tally to see how much it cost, just from curiosity of course...$3000 per dose. Adding the cost of the IV and the person putting in the IV and the bandaid and cotton and other odds and ends it came to somewhere close to $10,000 for the full treatment. Good thing I had insurance, huh?

I didn't have any issues with the treatment other than my arm getting cold because they keep the stuff in the fridge. I asked them for a little blanket or something to put over my arm on the second dose. I had the procedure while I was at work and just signed out for a long lunch and then signed back in when I was done. Really didn't have any problems with it. I sat and read a book while I was having it done because it takes a while for it to all go in.

The biggest side effect I saw, besides feeling great and being able to eat things I hadn't been able to for a long time, was a couple HUGE BMs, like wrap completely around the toilet bowl one and a half times kinda huge. My assumption was that when the bowels relaxed finally, all the waste that was up in there just started coming out in one big stool. Meh, it's gross, but you did ask about other people's experiences.

Truthfully, if I had the chance to get on it again, I think i'd jump on it, especially with my back and fingers and chest hurting all the time like they are.

 

[Kev]

yeah, Dan, it probably would sound gross to someone who hasn't gone thru this... but (speaking just for myself) I recall seeing some of those large, healthy looking BM's after I recovered from my last op., and a prettier site I don't ever recall seeing.

I seem to vaguely recall, think it was posted on here someplace, that once started on remicade, you couldn't or shouldn't go off it, as you couldn't resume it if you did. I may be totally mistaken, and I never got the opportunity to check this info with a GI, but if anyone can confirm/deny this, or find the thread where it was posted, it might be worth repeating... or at least looking into if thinking of going that route.

 

[vickyoddsocks]

I started on remicade (we call it infliximab over here lol) about 3 1/2 years ago. I first had it to try and heal my fistulaes so went on a course. We then decided to keep me on 8 - weekly maintanence infusions which i had been doing for a couple of years, for the crohns and fistulas. I started to notice a smaller change everytime i had it, to the point where it seemed like it was no benifit atall. so we decided to stop it, and i immediately i had a pretty bad flare up of crohns at the site of my previous surgery and caused a 7 X 4cm mass.
So needless to say im back on it again, having my next one this friday. My doc said its comon for people to get flare ups if they stop it.
When i first had it i notced the best improvements (first formed BM in years) but now i dont get any of that. I think it just keeps me ticking over and not too bad. I never really noticed any negative side effects, ( im usually on other drugs too so cant be sure)
Hope that helps!
XX

 

[Kev]

Hey vicky... Hmmm, that's interesting. I haven't been on it, but I did notice that when I went off of pred, and went back on it after a month, that it took more of it to do the trick, and that the benefits I got from it the 2nd time around weren't as good.

 

[Cog]

My first treatment was pretty impressive how fast it worked. I really had very little side effect except getting better (a new concept)

Then a I got a job with Centacor (the manufacturer) for a while. Now I have a better job at toilet paper manufacturer isn't life ironic!

 

[Kev]

OK, OK, there's only so much temptation I can pass on.. and my apologies to all for m saying this, BUTT...

Cog... you wouldn't be 'shitting me', would you? (local vernacular = 'kidding me')

You aren't working there as a tester by any chance?


OK, OK, again I apologize, esp. to Cog. must be the drugs, just couldn't resist it..

 

[Cog]

If you cannot laugh about things in life then where is the fun.

Yes it is true and I can get rolls cheap

 

[Kev]

Yeah, those are nice perks for people in our situation... but don't you just hate all of that 'paperwork'?

 

[Cog]

After a while you get used too it.

It is all recycled paper.

So don't forget to recycle your newspapers so that you can buy them back for another use.

 

[old hat]

I started on remicade (we call it infliximab over here lol) about 3 1/2 years ago.
XX

Remicade is a brand name. Infliximab is the generic name. like Tylenol (brand name) vs acetaminophen (generic name of active ingredient).

Of course to further confuse matters the active ingredient is called generically called paracetamol in many places. Most places actually.

 

[Kev]

Wait a mo... recycled toilet paper??? I challenge anyone to recycle my toiletpaper after I've used it.

 

[T kegin]

I was told every eight weeks after the third one, indefinitely.

 

[Nancy Lee]

Kev?
You mean I could be using your recycled toilet paper!!??
I mean I love your bear hugs and all...but this may be going a bit too far!

 

[Kev]

Hey, don't shoot the messenger.. I think that it's one of those oxy-morons... like the phrases military intelligence, political itegrity, moral dilemma (like, if you are moral, it shouldnt' be a dilemma). OK, bad jokes aside, that WAS pretty crude, even for me. My apologies.

On a serious note for a moment, I am not going to jump on a soap box and debate the recycling issue (even when it comes to TP - a subject near and dear to us all).. But, has anyone contemplated that paper used for same is bleached white with some pretty horrible chemicals... And that we seem to accept that as a culture... yet we can walk into any better quality store and purchase 'unbleached' coffee filters... Seems we have a distaste for using naturally brown TP, but are willing to pay top dollar for naturally brown coffee filters. Me thinks our priorities are askew!

 

[Nancy Lee]

Kev..please stop aplogizing! :ylol2:
And anyway...who you calling a moron? ROTFL!!!

I agree about the coffee filters and toilet paper...it's the same when you ask for something without the sugar, or salt or whatever.

It's gonna cost ya more to buy something that they have taken an ingredient out of! :confused2:

How crazy is that?!! :ybatty:

 

[Kev]

So, u object 2 the moron part, but r ok with the 'ox' adjective? I'll never understand u dames... Did the moral dilemma one get u rolling on the floor, or what? And as for my apologizing, think about it.. A fella my age who admits to being wrong, and that can say they're sorry w/o choking on the words. I must be a genetic abheration...

BTW Nice photo. Take it while on vacation? Ooops, sorry! I seem to have hijacked another thread..

 

[Nancy Lee]

Okay Kev..now you drew my attention to the 'ox' part!!!
I know you're just kidding and I need a lot of that right now.
If I have to go on Remicade I don't know how on earth it will be paid for..
I don't have any private insurance..just the government run Trillium and I don't know if, or how much they cover of it.
So that is a worry right now...one I can do without. *Hugs please*?

Thanks for the compliment on the up to date pic!
Actually it was taken last night right here in my computer room...
It's my autumnal one...LOL...I thought I looked more pumpkinish!
But HEY!!!! How come your pic is bigger than mine??? :tongue:

 

[Kev]

Now Nancy Lee... don't tell me that you don't know there's no such thing as female ox.. And as for my pix being bigger, you ever met a man who didn't have a swelled head?

I pretty much ruled out Remicade myself, due to the cost. At my last visit, my GI DID not rule it out.. she's working to arrange it (if I need it) on a 'compassionate' basis. So far, she's arranged for me to get all of my 5-ASA free, my stomach acid meds free, and got me into the 'at cost' pharmacy program at the local hospital. I know some people would see it as just free meds, but to me it's like a miracle, so I guess miracles do happen. I'll say a little prayer that some come your way too, OK