Remicade question / advice needed

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TereG
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/29/2008 3:49 PM (GMT -6)   
I've been taking Remicade for about 8 months, with no real problems. Though now, at age 41 and no other issues, I have developed extremely high blood pressure. I am now on meds for that. My u/c is better, but actually it was tolerable before. I am at 1 or 2 basically normal bathroom visits per day now, whereas before I was at around 3. I am thinking of stopping the Remicade cold turkey. The side effects I read about scare me, not to mention I hate taking off work every 8 weeks for 1/2 a day to get some drug pumped in to me. I take 6mp also. I'm quite sure my gastroenterologist will disagree with me stopping. What do you think? Is it dangerous to stop cold turkey?

thanks!
TereG

SheriMc
Regular Member


Date Joined May 2005
Total Posts : 103
   Posted 1/29/2008 3:59 PM (GMT -6)   

I would definitely talk to your dr before you quit cold turkey. I was told that if you get off Remicade and then try to get back on later, say if your symptoms return, it may not work the 2nd time around. So I would be so scared if you have your UC under control right now and then you flare when you get off. Maybe you can spread the visits out a little instead of going every 8 weeks. I don't know if that's possible, but it's worth a shot.

Good luck, let us know what happens.


9 colazal's a day
Remicade treatments every 8 weeks
Multivitamin
B-12 shots once a month
Iron infusions once a year
Got off Prednisone in March '07, was on it for 6 months
 
 


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/29/2008 4:22 PM (GMT -6)   
I am in the process of weaning off the Remicade.  I have been slowly spacing out the intervals between infusions.  I am currently at 14 weeks.  Will go for my next infusion at the beginning of March.  I take Azathioprine with it as well to prevent a build up of antibodies so my body should not reject it.  My GI does not want to let me stop the Remicade completely until Humira is approved for UC.  This way if I do flare again and the Remicade does not work a second time around (which he says is still a slight possibilty even with the Azathioprine) I will have a fallback plan.  At the beginning, stretching to the extra weeks was tough - the first time I went to 10 weeks, by the time I went for my infusion, I really needed it.  I was starting to get symptomatic.  Now, I don't feel anthing except increased fatigue as it gets closer to the 14 week mark.  Definitely speak to your doctor first - I would not recommend stopping cold turkey - it could cause you to flare again.

KTM


TereG
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/29/2008 5:09 PM (GMT -6)   
So I will have to take this the rest of my life? Ugh. I can space it out though? I tried Humira and had a major flare anyway.

Thanks so much for the quick responses!

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/29/2008 6:08 PM (GMT -6)   
TereG, only you can weigh the price of stopping the treatment against your gains. Sometimes people who stop and try to restart do have adverse reactions, sometimes not. I'd be extra cautious if you can't take Humira, because if you can't take Remicade you will have run out of possible medical treatments and in the event of a major flare could be staring surgery in the face.

Welcome to the forum. We're here for support and to lend an ear, and you'll find support here whichever course you decide on.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 1/29/2008 6:29 PM (GMT -6)   
I can't take Imuran/Azathioprine, but the Remicade has been helping, although I had to increase frequency because it never lasts the entire two months. I am lucky that my infusion clinic is open 7 days a week, I tend to go early-ish on a weekend and get it over with. I actually enjoy the quite "me" time in the chair with the nurses fussing over me, getting me cranberry juice, blankets, pillows, magazines ... I bring my Zune and watch video podcasts or listen to tunes or the radio. Love my Zune.

Personally, I think the side effects of Azathioprine are scarier, and I have read on this board that it's kind of dangerous to take both Remi and Azathioprine at the same time.

I haven't had any side-effects from the Remi, but yes, it's list of side-effects ARE cary and it took me quite a long time to decide to try it, about five or six months actually. But the side-effects of the Prednisone are terrible too and I have been on it going on two years now, so if the Remi can help me get off it, well, lesser of two evils? I am starting yet another taper tomorrow, dropping from 40 mg Pred to 30 mg for a week ... just had an infusion, so fingers crossed the taper goes okay this time.

My GI's plan is to first get me off the Prednisone, then once I am in remission with Remicade and Lialda for a good long time, we'll start to get me off the Remicade. He doesn't believe in putting his patients on it for life, and with Humira in the pipeline he says we still have something else in our arsenal should I need Remicade again in the future and develop antibodies. Humira CAN be prescribed off-label for UC now, although depending on your insurance you may need to jump through some hoops. It should be okayed soon for UC if it follows as the rest of the medications seem to go ... RA, Crohns, UC.

Meesh

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off, back to 40 mg; 12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/29/2008 7:46 PM (GMT -6)   
Why don't you try to stop the 6mp instead of the Remicade?  I am not sure about 6mp, but I know if you quit Remicade that you can't get back on it.  My advice is that you shouldn't risk never being able to take the Remicade again if it is working for you.  There aren't that many good drugs for UC and you limit yourself even more by just quitting the Remicade.  I thought that it wasn't good to take 6mp with Remicade cause it raises the risk of cancer.  By the way, are you sure it's the 6mp and Remicade that's causing the high blood pressure and not something else? 


Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08

Post Edited (princesscolon) : 1/29/2008 6:53:37 PM (GMT-7)


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/30/2008 7:09 AM (GMT -6)   
Hi I have been on Remicade for along while now. If you stop the Remicade you build anti-bodys to the Remicade and you usually can't go back on it.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


TereG
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/30/2008 2:41 PM (GMT -6)   
Thanks so much for everyone's advice.

Princesscolon, I am not sure that the 6mp or remi caused the high blood pressure. I just days ago turned 41, am not overweight (okay, maybe losing 10 lbs would be good) but my BP has always been below normal until just after I started the remi a few months ago and it's inched up. My Dad did have high BP in his late 40's, so maybe it is hereditary. Just a theory of my internal med doc and I that maybe it's the remi or the 6mp.

So, I guess I can space the remi out a little longer between infusions if it's working okay for me. I really wish I hadn't started it. I wasn't that bad, just a few more bathroom trips a day that normal, nothing major. I did have a big flare that landed me in the hosp. for 4 days when I was on the Humira and that's when they started tons of Asacol, Prednisone, 6mp, etc. etc. I've tapered off to only the 6mp but added the Remicade. Just frustrating to think I'll be on it forever.

My doc is only available during working hours to get the infusions, so I have to take off 1/2 a day off work, and I really don't want to tell everyone what I have. I just make an excuse and come in late. And that is stressful. If I had it done at the hospital, I could do it on weekends, but they tell me it takes all day and care is minimal. Plus, I don't think insurance pays for it.

Also, I am having some arthritis in my spine and hands. Doc thinks possible Ankolosing Spondolytis (sp?) may be the diagnosis, but he said it's difficult to be sure and there is no change in treatment if it is, so . . .

Anyhoo, thanks for the advice and I will definately weigh all of the input. I hadn't known about it not working again if needed.

Really, I look completely healthy (at least right now) ha!

Thanks everyone!
TereG
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