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prep to possibly be put on remicade...... I'm scared

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Ulcerative Colitis
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Posted 1/1/2010 3:43 AM (GMT 0)
I'm really scared. after my doctors visit today, I cried my eyes out. Shots scare me because my mom has MS and I was 9 when she was diagnosed. I dont remember when she started shots but they put her into a depression that scared me. so when my doctor told me today that I need to go on remicade I freaked out. can someone tell me the pros and cons? and maybe give me some positive advice or something.... I'm just really scared.
Posted 1/1/2010 4:15 AM (GMT 0)
Hey Jefferlee, and welcome to HealingWell! I've been on Remicade for over 4 1/2 years now, and haven't had any side effects and feel really good. I'm not saying that Remi is for everyone, but I wanted to ease your mind. I was so very sick when I decided to give the Remi a try; I didn't have much of a choice I was that sick. Next day (and this is not everyone's case) but I was feeling so much better...and have gone on to live a pretty normal life; travel for my job quite a bit, workout everyday, etc. Not only that, but I had a colonoscopy in August, and my colon was clear of ulcers; so I'm in total remission. I know it's a lot to take in, but ask us anything, we are here to help. The only con I can think of is that when you begin the remi, it takes about 4 hours to infuse. I used to think of it as my down time; bring a good book or movies to watch. Now I'm at the fastest infusion rate, and it takes me 1 1/2 hours every eight weeks; something I'm more than willing to do to keep this quality of life. Take care, and again, welcome!
Posted 1/1/2010 12:23 PM (GMT 0)
     Hi Jefferlee.  I have to agree with Carol.  No one was more scared than I to go on Remicade.  Back in 67 I tested positive on the PPD test for TB.  Remicade could activate the TB virus with fatal results.  I had another PPD test while being hospitalized last year and it was negative.  However, at the time, I was on a high dose of prednisone and was told that could give a false negative.  For the last eighteen months I have been in a constant flare and could count on one hand how many "good" days I have had.  One week before starting Remicade the doctor again gave me a PPD test and that too was negative, so I decided to go for it.  It was either Remi or colon removal.  So I bit the bullet.  I am soooo glad I did.  Within two days I noticed a significant improvement in my condition.  The bleeding stopped, so did the urgency.  When I say urgency, I mean URGENCY.  I had a porta potty in every room of the house.  That is how bad my condition was.  We have a ranch type home and I couldn't make it down the hall to the bathroom.  I was practically confined to my home.  We have an RV and kept it at a campground in the summer and I even had a porta pot in that!

     Remicade has given me my life back.  I still take the Colazal and am down to 2.5 mgm of prednisone, which I hope to be off of by next week.  I am scheduled for a colonoscopy the 26th of January.

     Since your mother has MS...that may be an issue to discuss with your doctor before starting Remicade.  Remicade is not a shot.  It is infused into your vein.  Carol mentioned it took four hours when she first started.  I started in November and had my third infusion yesterday morning.  It always took me about two hours.  I go for my fourth infusion the end of February and will be going every eight weeks thereafter.  Check with your insurance company too because it is very expensive.

Posted 1/1/2010 3:23 PM (GMT 0)
I was freaked out too about the remi. It has really worked for me. Try not to worry. I go in for my appointment at 9:00 and they take my weight(You can also call your weight in in the morning, that is what I usually do). Then they put me in a room (it has a tv and everything) and then they ask a few questions, and they they hook your iv up(my place puts warm rags on your arms and a blood pressure cuff to help), they also take your blood pressure and temp, then they give me tylenol and my hyprocrotisone, and then they start the remi they come in every 15 min. to 30 minutes and take blood pressure and temp. I go home about 3:00 I take alittle longer because they run my drip slow. Most people are out in 2-3 hours. I eat lunch during my infusion and read. Most of the time my mom comes with and we talk the whole time. It really is nothing. It is a God send for me. I was horrible before the remi. I was told I will need surgery sometime and I'm hoping the remi works for along time. It took a couple infusions for it to completely work for me. So, I wouldn't give up to quickly. Good Luck. I know it is scarly but after your first infusion you will see it was nothing to worry about. I feel your pain. yeah
Posted 1/1/2010 8:08 PM (GMT 0)
I was on Remicade for about 2 and half years. I never had any side effects, felt great during and after the infusions. It eventually stopped working for me, but the time it did work gave me the time to wrap my head around having the surgery, which is in less than two weeks (yikes!).

As far as being afraid of shots, you need to try to relax. Bear in mind that the nurses at the infusion clinic are VERY good at what they do. Most times I didn't even feel the needle go in, or felt it only ever so slightly. Drink something before you get to the infusion clinic, it's easier to find the vein if you aren't dehydrated. Don't drink TOO much because it's a kind of a pain in the neck to get up and go to the bathroom while you're having the infusion (but possible, just inconvenient).

Bring things to keep yourself entertained, book, portable DVD player or MP3 player. Just really try hard to breathe deeply and relax as much as possible when you're getting the needle placed. Tensing up makes it harder, then you'll be afraid on subsequent visits and it feeds the anxieties. Let the nurses know you're fearful, they are very compassionate and will help you through it.

I hope it works for you, it has for so many! Good luck!

Meesh
Posted 1/1/2010 8:32 PM (GMT 0)
thank you for the feed back everyone! It really does help :)
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