Remicade questions...

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Blue5
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 5/24/2009 1:53 PM (GMT -6)   
Hi all,
 
I am 30 yrs old diagnosed with Pancolitis (UC) in Sept 2007.  Since then I have had on and off flares.  I recently am in a flare and it seems as though my only alternative according to my GI is Remicade.  I am SO SCARED to take it.  I am not married and hope in the future to be married and have children.  Has anyone been on Remicade and had children?  Any advice you guys can give me?  I am planning on starting to take Haldi in a day or two.  Currently visiting family so  I don't want to start until I go home.  I have read that to much Haldi or Tumeric pills can cause D...anyone have this experiance?  How much should I start with and how soon do you guys see improvements?  I know not everything works for everyone but I want to feel like I have tried many different things before taking Remicade.  I am so scared.  I haven't even told my parents about my UC because I don't want to add to their worries.  Only 5 people in my life know so its hard. 
 
Blue5
 
Lialda - 4 / day
VSL#3 - 4 sackets / day
Pred 5mg / day (just started will phase off in 1 week)
Herbal Pills
Multivitamin
Calcium
 

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/24/2009 2:22 PM (GMT -6)   
I don't have your answers on the Remi impact on fatherhood, but research could make you less frightened. Info is out there on Remi---in spades. We have had a relatively good experience on it, and my daughter is in remission. Nothing else got us here, and there have been no side affects other than some recently elevated blood stuff. It is saving her high school year, and her colon for now. Have you tried the other drugs available? I don't know your condition well, but there are lots of drug combo's out there and lots of GI's to visit before you give in to something that you are not ready for. Rectal meds are helpful, Humera and Imuran are possible, lots of ASA combo's, etc. 5mg of Pred is very low to work...
Keep reading here--you'll learn lots. Keep focused on the short term for now, so that you get the relief you deserve. Let us know how the alternative treatments work for you (Haldi and Tumeric posts are on this site). They are a long shot while in a big time flare, but have helped many.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 5/25/2009 6:09 PM (GMT -6)   
As far as Katmom's post, Humira is very similar to Remicade but it's not been approved for UC yet. There may be issues having your insurer cover it. Some will cover Humira, but only if you've been on Remicade and it's stopped working for you. It's basically the same except the protein it's derived from differs and is supposedly less likely to cause antibodies forming. Also rather than getting it as an infusion in a clinic or hospital setting you can self-inject Humira with a pen-like device.

I don't believe there are fertility issues with Remicade, at least I haven't noticed any on the drug manufacturer's info. Since that is a major concern of yours it's definitely something to bring up with your doctor.

I was VERY nervous about starting on Remicade and now I feel silly about having been so upset about it. I have not had any negative experiences on it and it's really been a godsend for me. I am about as in remission as I think I can be. It let me get off Prednisone after two years of steroid-dependence and those side-effects, which were far worse than anything I think Remicade can throw at me. The most serious of Remicade's side-effects are quite rare, while Pred's side-effects happen to virtually everyone on it for any length of time.

I was worried about getting infections or ill, and except that the odd cold hangs on longer than it used to, for the most part I have never been healthier (likely due to hyper-vigilance about mine and my family's hand washing).

My mornings I tend to go with great urgency for the first hour or so I am awake, but then I am FINE for the rest of the day -- I have my life back. I get my infusions every six weeks (eight week intervals are the norm) and toward the last week, week and half I start to bleed a bit, but it doesn't progress into a flare and there are no other symptoms, no pain.

The infusions can take several hours, so bring a book, laptop or MP3 player to keep yourself occupied.

As far as keeping your condition secretive, you may want to be more open with people. I am, and I have found friends to be very supportive and helpful, and you'd be surprised at how many people know someone or are close to someone with some form of inflammatory bowel disease or IBS.

Remicade seems to be relatively safe and effective and mostly well-tolerated. Goodluck with whatever decision you make. By the way, if the medications concern you, research the surgery, it seems to be a very good option -- I am currently saving my money so I can afford the time off for recovery, I am self-employed with a very physical job, the Remicade is buying me time, but as well as I am tolerating it, I don't fancy being on a drug that is costing my insurer $5K every six weeks -- I really fear losing coverage. Surgery permanently rectifies the problem.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

15 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 4/25/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

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