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Regular Member

Date Joined Oct 2006
Total Posts : 46
   Posted 8/10/2008 6:34 PM (GMT -7)   
I know there are tons of posts on the subject of remicade. My GI and family practioner both think I should be on it. I'm supposed to start it tomorrow.
It makes me nervous to say the least. I've read about it quite a bit. The side effects ( that you CAN POSSIBLY get) seem like it might not be worth the potential help from taking it....I'm just so confused!!!
I was diaognosed in 2004 with UC, wanted a 2nd opinion in 2005 was diaognosed with moderate severe UC, probable Crohn's. I was on I beleive every pill from to try to treat it for over a year. The last pill form was immuran, it woked for awhile, till I started feeling really good except for some breathing problems. I went off it on my own, I was in a pretty good remission like state till a couple of months ago. Then started with the diareahha, bloating, pain, all the usual symptoms again. Went back in to see my GI, she was leaving so I've been seeing a temporary GI at my clinic along with my family doctor. They were both wanting me to either go back on Immuran go start remicade. They put me on prednisone(have been on that since 7/9/08 and hate it stuff, but it has helped the diareahha control)
Well, 10 days ago I started having unbearable pain on my lower left side, went in to the GI, went through exrays and CT scans, and it was showing inflammation in lower intestine and colon. My GI said he then wanted to start me on immuran on my next clinic appointment with him, but he said it takes like 6 weeks to started truely helping, soThey tried me on some pain relivers that gave me really bad side effects ( couldn't breathe decent, and a seizure ) so needless to say I stopped taking that, called the GI doc and he said he couldn't get me in so I could go to the ER if I wanted. Well By the time I talked to him, I was starting to feel better so I stayed home.
Now this last Friday I again couldn't tolerate the pain any more ( the pain now is, on my lower left side and my lower left side on my back) both my GI and family doctor said they couldn't get me in so if I wanted to I could go to the ER. Well, I did that, and they admitted me into the hospital where they just kept doing the same test ( CT scan 2 times, TONS of blood tests, and TONS of exrays) was in there till late afternoon today, Sunday. They tried me on Ketorolac by IV, instead of the prednisone and to help with pain, which didn't help the pain at all, and the on Sunday gave me a Lidocaine Patch, which eased the pain some.
What REALLY scares me is that I've always had on the lower side of blood pressure and heart beat ( it was ususal for me to have 50 for my heart beat and blood pressure of like 106/68) well while in the hospital the last couple days my blood pressure dropped I don't remember the numbers exactly but, I know my heart beat was going between 28 and 44, which is not good...and had some feelings like I could'nt breathe right, harder to breathe than normal.
The reason I got released from the hospital at all, was cuz none of my test showed anything wrong except for my inflammation in my lower intestine and colon like before, they said my heart looked fine (the right size), and my lungs and other organs looked fine, and I have my GI appointment tommorrow, which is when they want me to start remicade. 
I told them I would go to the appointment and now am wondering about the effects of remicade on my heart...they said it looked from exrays or ct scan...I don't know if I trust this. If my hearts fine like they say, do you think it was a reaction to the Ketrolac drug??? And If my normal heartbeat is at 50, should I worry about Remicade???
I'm sorry this got SO long!!!! 

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/10/2008 6:54 PM (GMT -7)   
Hi I relly don't know about the heartbeat question but you need to discuss it with your Dr. if you decide to go with the Rem. I cain't say what you should do and I know it can be a hard decision to make. I was on it for 6 months last year so I know what your going threw but as I say I'd talk over your concerns with the Dr. Best Wishes on what you decide. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Mar 2006
Total Posts : 1034
   Posted 8/10/2008 8:03 PM (GMT -7)   
i cant run to save my life anymore. i dont do any cardio at the gym. i have nothing to run from so i dont do it anymore and i'd rather save my knees. so with that being said, my pulse is still super low. i'm usually in the 50-60s for my resting. i've always had low blood pressure too. so for me, every time i had a remicade infusion, they all went down. why? i think cos i was so relaxed. you are hanging out for like 4 hours and they gave you benedryl. i saw my pulse one time drop into the 30s. seriously. every time i got an infusion they had to adjust the machine (sometimes several times) to keep it from beeping cos my pulse and blood pressure would drop. no one, not even me, was concerned. i always felt fine too. so the moral of the story is - some of us are just lucky to have a low resting pulse and low blood pressure. if you are truly concerned, then please, i implore you to talk to your doc and get your concerns fully addressed to the point that you feel comfortable and that this is not a risk BEFORE you get your infusion. otherwise you wont be a happy camper and will potentially make yourself flip out during the infusion thus complicating things.
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

Regular Member

Date Joined Jul 2008
Total Posts : 83
   Posted 8/10/2008 10:32 PM (GMT -7)   
I am on remecade it is doing wonders for me. =) Not to worry if you go on it then things should get better.
18 years old, College Student ~WAHOO GO CATS=)
Diagnosed in 2004
Currently on:
Imuran 3pills/day
And many other over the counter meds.

Veteran Member

Date Joined May 2007
Total Posts : 589
   Posted 8/10/2008 11:20 PM (GMT -7)   
Remicade worked wonders for me for a couple years. Well worth it for me, but thats something you need to decide for yourself. I never had any major side effects, just got tired faster the day of the infusion and slept more soundly.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 8/11/2008 1:46 AM (GMT -7)   
Have you had your potassium levels checked?
Co-Moderator Crohn's Forum.

Regular Member

Date Joined Oct 2007
Total Posts : 149
   Posted 8/11/2008 5:14 PM (GMT -7)   
Remicade worked wonders for me and still does. Now i'm back on rem thank god i had to get my insurance straighten out was off of it for about 2 months and had to take pred. I hate that stuff. Take it, its worth the risk because quality of life is so much better on remicade. Good luck to you..
Crohns for 13 years
1 surgery so far
2 times in hospital for blockages
B12 Injections

Regular Member

Date Joined Oct 2006
Total Posts : 46
   Posted 8/12/2008 11:38 AM (GMT -7)   
I don't know if they checked potassium levels....they have taken so much blood for all knids of tests in the last few days, that I would assume they would have checked potassium. I never asked to many questions on the blood tests cuz they had me pretty drugged up (morphine for pain, till one doc. came and said there was a study done at the Mayo that said people with CD should not be on morphine)

Update: My GI Doc. didn't start me on Remicade yet. He put me back on Azathioprine, along with my Pred and pain patches. He wanted to do this until I can be seen by a surgeon in 10 days. This surgeon is supposed to check to see if I have fistulas ( which I know I do, it's obvious to me by what's coming through female body parts that shouldn't be), why the fistulas didn't show up on xrays or CT scans, without having to have a surgeon go into my body to check is weird to me.
Then he wants to put me on remicade if I have the fistulas ( like I know I do). So, I still look to be Remicade bound.

Forum Moderator

Date Joined Feb 2003
Total Posts : 15160
   Posted 8/12/2008 2:39 PM (GMT -7)   
It takes Imuran a good three months to kick and start working. I have been on it since 02. I am back on Remicade for a fistula as well. I also did a round of Flagyl. I had been on Remicade every 4 weeks for 3 1/2 yrs and it worked very well for me. But then towards the end it seemed not to be working so well. So, I went off of it and went on Entocort. If it gives you a better quality of life isn't that what you are after? You have to remember if one person has any type of reaction to a drug, the FDA requires that company to list it as a possible side effect. Geez, look at the side effects of Prednisone. Good luck to you. Susie

Regular Member

Date Joined Jul 2007
Total Posts : 239
   Posted 8/13/2008 5:28 AM (GMT -7)   
Sometimes surgeons see things on the CT film that other doctors don't, even radiologists, so that's probably why they want you to see a surgeon. I'm having a colonoscopy next week because of D and some pain, nausea, gurgling. My GI has already told me that if he finds anything then he wants me on Remicade or Humira with the Imuran I'm already on. I understand your fears about the Remicade, I feel them too. I have low blood pressure and take meds to keep it from dropping and I hadn't thought about that being a concern. Now I have something else to ask my doc about!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.

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