Is it time for Remicade?

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DixieS
Regular Member


Date Joined Nov 2005
Total Posts : 92
   Posted 4/20/2008 2:14 AM (GMT -6)   
 
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?
 

Dixie
 *****************************************************
Diagnosed Dec. 2003  Ulcerative Colitis 
Currently in flare since 1/08
Sulfasalazine 3g/day             Albuterol 2x/day (Asthma)
Azathioprine 150 mg/day       Advair 500/50 2x/day (Asthma)
Entocort 9mg/day                
Asacol 400mg/day                              
Allergic to:   Rowasa, Demerol, Bactrim
                                 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/20/2008 3:05 AM (GMT -6)   
Drag it out further, or an extremely solid chance of a massive jump in Quality of Life?

I wish, wish, WISH I could get Remicade. I am going 20 times a day and have been flaring now for 2 years.

If I was in your place, with the minimal symptoms you have, I would jump at the chance as there is a high likeliness it will throw you right back into remission.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/20/2008 6:18 AM (GMT -6)   
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?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30506
   Posted 4/20/2008 10:37 AM (GMT -6)   
Never wait for a nasty flare....

Stay on the Canasa regardless of what your plans/hopes are for Remicade...wy would you want to stop it...is it helping?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


DixieS
Regular Member


Date Joined Nov 2005
Total Posts : 92
   Posted 4/20/2008 11:34 PM (GMT -6)   

 

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?

 


Dixie
 *****************************************************
Diagnosed Dec. 2002  Ulcerative Colitis 
Currently in flare since 1/08
Sulfasalazine 3g/day             Albuterol 4x/day (Asthma)
Azathioprine 150 mg/day       Advair 500/50 2x/day (Asthma)
Entocort 9mg/day                
Asacol 400mg/day                              
Allergic to:   Rowasa, Demerol, Bactrim
                                 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/21/2008 3:45 AM (GMT -6)   
Eva Lou - In Australia, you can't just go on a drug unless you have private health insurance. Your employer rarely/never pays for health insurance here. Also, you can not GET insurance if you have a pre-existing condition. You have to have the insurance before you were diagnosed. As I was diagnosed so young, I never stood a chance.

You could theoretically pay for remicade, but its $1080AU per dose here. So the initial loading dose of 4x standard would send me broke.

The only way to get it is to go through all that I am going through. My GI then has to justify to the AU government why it should subsidise the cost of this medication for me.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.

Post Edited (Severin) : 4/21/2008 3:48:20 AM (GMT-6)


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/21/2008 3:53 AM (GMT -6)   
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.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/21/2008 6:38 AM (GMT -6)   
Severin- Wow!!!! That is just awful. For all the US health-care bashing, I gotta say- my insurance covers 100% of my infusions. I don't pay a thing. Well, I hope you do get relief from the Golimumab. Or from something, for gosh sakes! So after you exhaust all trial options, then they will (possibly) pay for Remicade? And would they pay for surgery if you ever should need it?  And Dixie- yes- Remicade is definitely not a last option! Even if it just buys you some time, who's to say what new drugs may have been approved in the meantime & are available for you to use? I'm 37, & I feel like there's a lot left to utilize- talk with your GI, make a plan of sorts- give Remicade a shot, if you find it doesn't help (which is highly unlikely, at least initially), talk about whot other options you have aside from surgery. Good luck!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/21/2008 7:39 AM (GMT -6)   
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!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


DixieS
Regular Member


Date Joined Nov 2005
Total Posts : 92
   Posted 4/21/2008 2:14 PM (GMT -6)   

 

Talked to GI, and it's official!  I'm starting Remicade.  I am stopping the Asacol, as it may be the culprit as to why things suddenly got worse.  Asacol or not, things weren't getting any better.  If things don't improve after discontinuing the Asacol, I may go back onto prednisone in the meantime.  Why???  I asked, but his assistant had no answer.  In any case, I will be able to wean off of it and Entocort soon!

I have to schedule with a woman from the office.  I am off to do my TB test today.  As much as I have been dreading this, oddly enough I feel like I could celebrate today!  It must be the relief of making a choice.

What are things that you like to do during an infusion?

When I had an iron infusion I brought a book, but that was awkward with the IV in.  It took many hours, so I slept.  I'm guessing that it will be similar this time, at least regarding reading a book.

 


Dixie
 *****************************************************
Diagnosed Dec. 2002  Ulcerative Colitis 
Currently in flare since 1/08
Sulfasalazine 3g/day             Albuterol 4x/day (Asthma)
Azathioprine 150 mg/day       Advair 500/50 2x/day (Asthma)
Entocort 9mg/day                
Asacol 400mg/day                              
Allergic to:   Rowasa, Demerol, Bactrim
                                 


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 4/22/2008 7:39 AM (GMT -6)   
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.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26

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