opinions needed from remicade veterans

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landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 9/23/2008 10:13 AM (GMT -6)   
OK, so I have asked some questions and have recieved some great help from many of you on here and I thank you.  Currently, I just had my 7th Remi at 10mg/kg.  I had been off pred for 6 weeks and fluctuated some days good and some days bad.  I know it sounds weird, but the first 5-7 days after my remi infusion I become much worse.  It has gotten progressively worse with the last three infusions....overall feeling of unwell, more blood, cramping and nightly trips.  Doc told me three weeks ago my sig looked great...still slightly active but so much better than in the past and that I needed to stay on the remi course.  This time I have no doubt....I went in last Wed feeling great.....hardly any blood, formed movements, sometimes 1-2 a day, sometimes an afternoon visit.  After, as early as Thursday afternoon, the inflammation got so much worse.  The cramping and pain from the formed movements took my breath away, and the blood was there but I could not tell if it was from hemmies or not...no D, except for Sat night, but I still felt like a trucjk ran over me.  Question I have, now that I feel somewhat better, much less blood and cramping much more subtle, is as follows.  I can not take 6mp due to toxic levels after being on it for 3 months, so I am basically on Remi and not compatible with 5-asa, is should I try and kick start remisssion with a course of pred.....and hope the remi holds it off when i taper?  I am very sensitive to pred....I know 15 mg will thro me into remission within 3 days.  I have not been on more than 2mg for 4 months...very slow taper with symtoms comign and going.....As an adjunct therapy should I try the pred on a short course to induce remission, or do i risk crashing into major flare when I taper back.....I feel like this is so close to being over, but I just can't get this remission to stick even though the remi has been in me for so long.....I know several patients in my docs practice were using the pred as a crutch for over 6 months until the remi took over.....Is the remi just not going to work at all....I am obviously a little scared, and I know the remi makes me sicker when I get it.....Any thoughts would be appreciated on what to do with the pred or anything else.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/23/2008 11:28 AM (GMT -6)   
Best thing to do would be to check with your gastroenterologist on this one.  I just got off a long course of prednisone and had a bad day on Sunday, better on Monday and today fine.  I think it was due to my diet.  I am on 6MP (50 mgm), Colazal and Cort enemas alternate nights with Canasa.  I am not a candidate for Remicade having been exposed to the TB virus in the 60's.  However, I have heard such lousy reports from people who have been on Remicade..that it really hasn't helped them and some got even sicker, like you, I don't think I would go on it if I could.

landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 9/23/2008 11:44 AM (GMT -6)   
Christine.....I have not heard reports of some who got sicker on the remicade...can you elaborate on what you mentioned? I thought I was the absolute opposite to the norm having had not a whole lot of wow with this supposed wonder drug. Thanks in advance for reply. I am very interested in the reports your mentioning.

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 9/23/2008 12:19 PM (GMT -6)   
I'm not sure they got "sicker", I think the result was that it just didn't work well for them. But, I could be wrong on that aspect. For me, the drug has been a wonder, but as we often say here, what's good for me, isn't good for someone else. Have you tried Rowasa enemas? Some say this is the trick in getting them over the hump. I definitely would talk to your doctor and discuss the problems you are having with Remicade.

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 9/23/2008 12:23 PM (GMT -6)   
I have not tried the rowasa enemas due to my previous expereince with lialda and asacol....both did not go well....lialda made me much worse over a period of time and asacol did the same if i took more than 2 per day.....Wouldn't rowasa enemas do the same?

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/23/2008 5:26 PM (GMT -6)   
hi there- just chiming in to let you know you are not alone in Remicade not being the "it" drug for you- I don't think of it as my wonder drug either. Sure, it helps- I haven't been on pred in a while, 7 months. But I get very symptomatic as soon as 4 weeks after my infusion, at the 10mg/kg dose. Remicade lets me go about my business with the occasional accident, as opposed to daily accidents. To tell the truth, sometimes I get annoyed with those who have had wondrous results- I'm envious! I have heard of a feew people who get worse just after their infusions. I tend to get better, then it gets worse & worse as time goes by. There are quite a few people over on the ostomy forum who either had zero luck with Remicade, or found it made them sicker.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 9/23/2008 8:14 PM (GMT -6)   
Landcrusier:

Here is my story about my adventure with Remicade. I only had 3 infusions of it and was taken off of it. I responded to the medicine in the hospital, but my second one I started showing symptoms of the medicine. When I got out of the hospital the medicine would give me back spasams. When I went for my third dose, I almost went into anaphalatic shock, had to immediately make a trip to the bathroom after they took the iv out of me, and I majorly bled in the bowl. I was hospitalized for a night, and had an infusion that day. My doctor switched me to Humira since May 2007. Been doing GREAT since. Maybe you should chart your symptoms as specific as possible and then bring it to your doctors attention next time u see him/her.


Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 9/23/2008 8:52 PM (GMT -6)   
Wish I had the answers, but we may be on the Remicade route too. Meeting with the GI again on Monday, and will begin the insurance co. fight on Tues....
I am afraid of the side affects, but I don't know how long my daughter can live in the flare she is dealing with. She hates the Pred., and has had terrible side affects, both mental and physical. We switched from Asacol to Colazol, from Rowasa to Cortafoam, and upped the 6pm to give her the appropriate levels. NOTHING is working...still 5-9 bloody painful stools per day.
So, I will await any insights from you, dear readers, on how the Remicade has worked or if there is something we are missing in this puzzle! Thanks for asking the question.
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Asacol, Prednizone 50mg, major flare, now off!, Hosp. @U of C, Comers twice this yr. Low residue diet still
began 6MP, ,horrible acne, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


seg123
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/23/2008 9:40 PM (GMT -6)   
So I'm a 19 year old college student and I have been suffering from UC since I was 14. I live 4 hours away from home and im having to drive back every 8 weeks to get my Remicade infusion....I've only had about 5 infusions and the next day I feel great but i have a sort of gasy achy like feeling. However, I become the same as I felt 2 days later.

My last infusion I had a reaction; my heart rate went way up, i had an itchy burning feeling, and my body was beat red. VERY scary. However, my doctor continued after dosing me up with more of the pre-meds. THEN, the next day I'm driving back up to school and I start having the same symptoms while im driving and had to pull into a nearby hospital with my heartrate going at 175bpms.

Anyways, I'm still waiting to get my next infusion but I am somewhat hesitant. I have also been having terrrible anxiety which I never used to get. I'm thinking about just getting off of Remicade completely because I've heard about neurological effects which might be causing me to have severe anxiety, but im not sure and i definatley dont want to be put on anymore medicine. Also, my doctors have found a lump in my neck which is being biopsied in a few weeks (hopefully its nothing serious but in the Remicade inscription pamphlet it has been related to Lymphoma and Leukimia, as well as other diseases). And due to it's immune suppressent like qualities I seem to always be sick with something and it takes cuts and small things longer to heal.

My BM's are mostly in the morning, but my doctor said thats when they are most frequent...apparently UC is like a cycle. Also, when I go out to bars with friends I'm terrified that the bathroom lines are going to be super long therefore making me nervous which causes me to have to go. I mean if those lines are long we all know what might happen and its truly embarrassing.

Has anyone else had a reaction like the one i just described or anxiety?? I truely don't think Remicade is working at all.
( I am on 375mg of iron 2 times a day which makes my tummy feel worse sometimes, asacol 2 tablets 3 times a day, Amox twice a day for some type of infection, and yaz(BC), i also just got off the cortifoam since the bleeding has subsided.)

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 9/24/2008 8:53 AM (GMT -6)   
Seg...geez, if I was even thinking of going on Remicade (which I am NOT), your post sure would change my mind.  Did you know that doctors are getting "kick backs" from this drug company for pushing it?  I read that somewhere and when my GI started pushing Remicade AGAIN, I just up and told him "What, you want to go on a cruise at the expense of my health?"  He shut up like a clam.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/24/2008 9:23 AM (GMT -6)   

I've had 4 infusions and have not reached remission yet. However, my last c-scope showed that Remicade has healed all of my colon except for the last few centimeters. So knowing that helps me get through the bathroom runs in the morning. I was actually scheduled for surgery yesterday, and canceled b/c of the great c-scope.

For those of you not on Remicade but considering, do remember that a minority of people get the big problems. According to my doctor and the nurses at my infusion center, there hasn't been anyone under their care who's had major problems w/ Remi (but then again, I still go to a peds hospital so they're probably extra careful w/ everything).

seg--I'm sorry Remi infusions has caused a lot of problems; I can't believe your doctor still pushed it after the reaction. However, you may not be feeling better (UC-wise) due to Amox--it's an antibiotic and kills good and bad bacteria, which could aggravate UC symptoms. Also, bc pills can cause a flare/aggravate symptoms.


Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 9/24/2008 9:37 AM (GMT -6)   
Comedy dork.....that is exactly what my last scope showed but I still have symptoms on and off.....runs to the bathroom....mucus, and clear watery pushes every now and again...not full fledged D but i still get the urgency and the wake ups in the night.....how do you generally feel on the remi? do you feel better, bllod? formed stool? very interested to know...I am feeling great today....one moevement thismorning with a little blood but no cramping...this is so typical for me...exactly one week after the infusion I start to feel better, but the first week is hell...I went home yesterday and slept from 8 until 5:30 this morning....fellt like I was goingt o puke all day yesterday with watery movements and the lower abdomen burn.....it's amazing how much better i feel today but it's so common for me and this cycle....it's almost like my body is trying to reject it or it's just a toxic feeling for a week...I am going to see my doc next week...he is out of town this week...maybe on a remi cruise!!!!!

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/24/2008 11:10 AM (GMT -6)   
I'm still having a blood, but not as much as before starting Remi. I still have to run to the bathroom a couple times in the morning and once or twice after lunch. I'm having most formed stools. I'm still having huge fatigue issues.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 9/24/2008 5:38 PM (GMT -6)   
I have been on Remicade since Nov. 2007- it didn't start working until Jan. 2008- I am the type of person who has a reaction to everything... no kidding. I had NO adverse reaction to Remicade or any of the other UC drugs- not even 6MP- THe problem is they haven't helped me either, but I know that they do help a lot of people. I am going to 10 mg/kg starting next week and hoping that will help.
 
Read up as much as you can - you may not feel better right away- it may take a few months.
 
Good luck
Jackie, 43

Pancolitis, DX Jan. 07

Lexapro, Lialda, Sythroid, Protonix, Rowasa suspension

Remicade 9th infusion- Sept. 9th

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