Remicade veterans - I'm going on it and would love your advice & thoughts

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Newlywed3
Regular Member


Date Joined Oct 2005
Total Posts : 129
   Posted 8/21/2007 2:24 PM (GMT -7)   
Does it work right away?
 
Does it hurt?
 
What should I know?
 
Did you have a baby on Remicade?  (I'm not pregnant now but would like to be)

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/21/2007 2:50 PM (GMT -7)   
I was on flagyl, 60 mg. of pred., cipro, and imuran when I started remicade, so I didn't notice any immediate effect. Once I got weaned off the pred. and stopped the antibiotics, we tweaked my imuran and remicade schedule so I am not having symptoms in between infusions. I had a rectovaginal fistula when I started and after the 4th infusion it was completely closed!

It doesn't hurt....just the poke from the iv needle. :)

My dr. makes me get a chest xray every year, and a urine histoplasmosis. You will also need a tb test before you start. I also get my cbc and liver enzymes checked every 3 months.

I love remicade. It has given me my life back. I will be 3 years this Dec. since I started. I have not had any children while on it, but there are several on here who have, and I am sure they will be along to calm your fears in that area.

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 8/21/2007 3:53 PM (GMT -7)   
I am not on it anymore but did take it for 2.5 years and loved it!

I saw results within 12 hours, though that is evidently quite rare. It was a miracle drug for me.

The only pain would be the IV. I had huge IV issues in teh beginning because I was so sick and veins were not found easily but once we started to get a nurse that works in the infusion center doing them, it went much better. The medication itself doesn't feel at all and is just mixed with saline.

Evidently a lot of woman have had healthy pregnancies and babies on it and if I was still on it, I would have been fine getting pregnant on it. I'm on Humira now which has more questions regarding pregnancy and is more of a concern for me than Remicade. I would visit with your doctor at length about it, too. He may have had patients with exp.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 8/21/2007 4:08 PM (GMT -7)   
Hi, I have been on Remicade for over 2 years it is a wonderful drug. I had another infusion
today and I am doing fine frrom it. I hope things go good for you.
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
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/21/2007 4:22 PM (GMT -7)   
Hi Newly Wed hope the Rem works for you I am not tihinking of getting pregneant or have been while on it so don't have any help to offer you but it is a great help for fistula's and like chronnie I have taken the other meds like her except the Ciprol.I will say that I don't get any pains now and not much D which is great . It is easy to get and once the IV is in I just relax and it seems to go good the time it takes to get it done. I was a little nervous for my first one but after that I am not nervous now. My fistula healed after my third treatment and I noticed results while getting my first treatment my fistula was to abdomen after abcs surgery. Wishing you sucess.lol gail

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/21/2007 7:09 PM (GMT -7)   
I have been on it for 5+ years. It worked a miracle for me too. I could tell a definite difference in the first 24 hours when I first started getting it, but I was really sick then. Now I'm more stable so I don't notice the change so much, but I can tell when it's wearing off. Doesn't hurt me at all. Getting an i.v. isn't fun, but it's worth the pinch to get the relief of the meds. I have R.A. also, so it helps my joints too. I've had 2 remicade babies and am planning on having 2 more. Ask me by Sept 1st and I might be able to tell you that baby #3 is on the way. :) I wish you much success.

Stef

Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 8/21/2007 8:03 PM (GMT -7)   
the only problems i had with it was it made me tired for the rest of the day, and that over time it's effectiveness diminished. but thats just me.
19, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


lele91
Regular Member


Date Joined Mar 2007
Total Posts : 26
   Posted 8/23/2007 11:20 AM (GMT -7)   

I've been on Remicade for 2 years and all seems to be going well.

My GI did not tell me it was ok to have children on Remicade, but my OBGYN said she was oaky with it since it was a schedule B drug.

My husband and I just started trying for our first child. I'll let you know in Sept if it worked. Our plan is to try every 8 weeks right after the Remicade dose so I would only have to have 1 treatment, not 2 in the first trimester.


33 yr old female
Dx 2/04, symptoms since 1999
Gallbladder removed 1/04, resection 3/04
Currently on Pentasa, Bentyl & Remicade   


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 8/23/2007 12:27 PM (GMT -7)   
5+ years on it here, 2 years on a double doseage of 1000MG.

It won't work right away. You might see some improvement in a few days after the first few days, but give it at least 3 infusions before deciding if it works or not.

The infusion shouldn't hurt. The needle stick when they start the IV might a bit, but you could always ask them to numb the area first if you are sensitive to that kind of stuff.

What should you know? Talk to your GI about any concerns. There are some increased risks for some type of cancer with this drug, but from all my (and the GI's) research, no one could tell if it was the drug causing it, or if they were just finding it sooner since they were specifically looking for it. Remicade can also subdue your immune system so healing from cuts/scrapes, or other illnesses can take longer. Your GI should also be looking at blood test every few months, just to be sure that you are doing ok on it.
Take a book or something to do on your infusion day. It can take a couple of hours, so have something to do. As for me, it is a one on one thing, so I have become good friends with the infusion nurse.
The infusion process is monitored closely, so the RN will be taking vital sign reading pretty regularly to see if a reaction to the drug is starting. If one does, they can usually just slow down the infusion rate, or stop it, and things can clear up. The Remicade is very diluted into saline, so they are not dumping all of the drug into your system at once. It is diluted, and infused very, very slowly at first. If your vitals look good, they will up the rate a bit, and keep doing that.
Just be sure to talk to the RN about any concerns.

I hope it works for you as well as it has worked for me. It gave me my life back.
Matthew McKenna,

"I'm just along for the ride."


MMac
Regular Member


Date Joined Dec 2006
Total Posts : 244
   Posted 8/23/2007 4:53 PM (GMT -7)   
I only recently started but for me:
I had immediate effects and felt better

It did not hurt and the infusion went well

Drink plenty of water, bring something to keep you entertain during your infusions and make sure you rest and relax after treatment

MMAC, Wife & Mother of 3 (14, 13 & 7) - Diagnosed w/CD June05 (terminal ileum)

Asacol (9 daily), Imuran (150mg), Prenisone (15mg), Cipro (1000mg)Lunesta (3mg), Phenergan (when needed) - Remicade as of 7/24


danlop
New Member


Date Joined Feb 2006
Total Posts : 6
   Posted 8/23/2007 6:17 PM (GMT -7)   
 
 A miracle drug for me. Sometimes i dont even remember i have crohn.
 
 Im on it for 5 years.
 
 Good Luck

killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 8/24/2007 5:01 AM (GMT -7)   
Wow. It's amazing how well this drug seems to work for so many.

Any chance this will someday be the first line of defense? Prednisone seems so nasty in comparison.

Is it just the cost that keeps it from being more widely used?
36 year old mother of a fabulous toddler.
Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Currently taking Entocort 6 mg/day (tapering down), Asacol, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Gastritis is back - constant, gnawing hunger. Yech.

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