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Going in tomorrow for Remi

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Ulcerative Colitis
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Posted 10/13/2009 11:34 PM (GMT 0)
Well I had a flare that began on July 4th and hasn't stopped. My doctor raised my pred incrementally since then and I'm up to 20mg and still no luck. He's been pushing Remicade since I first saw him 6 years ago. Now after trying everything up to and including the SCD which I tried fanatically for months, I'm going into the MGH Colitis & Chrons center for my first dose tomorrow.

I'm scared to death because of all the things I've read but now I've got no choice. My friend had a great way of looking at it though. He asked me if I had cancer and Remi was my chemo, would I go for treatment?

Of course I would.

Still scared though!

If I live through it I'll post tomorrow.... cry
Posted 10/13/2009 11:45 PM (GMT 0)
Take a deep breath and relax. I don't know what you've read that's scaring you so much. That people can get lymphoma? Yes, but the huge majority don't. That you can have an allergic reaction? Ditto, plus you'll be somewhere that they're well prepared to deal with that.

Be prepared for it to take several hours. Take a good book, or a gameboy, your MP-3 player, a puzzle book, whatever sort of quiet activity you like. Sometimes I take a little nap.

For almost 4 years Remicade has given me back a life that I had lost. I hope you have as much luck as I have had.
Posted 10/13/2009 11:47 PM (GMT 0)
I started flaring in May and was in the hospital for a week. Doctor put me on IV steriods and released me with 60mg predisone. I have started and finished the first three doses of Remicade 1 week 3 weeks and 7th week. Very minor side effects, slight headache and just worn out after sitting for 5 1/2 hours. Some find that it works right away or after the second dose, I however have not been so lucky. I go in for my forth treatment October 23 two weeks short of eight weeks to see if it's going to kick in.

Take a good book and your mp3 player. They will start you off real slow. I get two and a half bags and the first bag takes forever. I hope it works for you.

Good luck and enjoy the down time. turn
Posted 10/13/2009 11:50 PM (GMT 0)
PLEASE DON'T WORRY!  I worried so much right before )my first infusion(end of July 2009).  This is what I do when I go.  I check in, they take me in the back, weigh me, put me in my room(there are rooms divided my curtain with a tv, at my place anyway), warm my arms up with warm towels, but the IV in sometimes I get stuck twice because they have to take blood and my fore arm doesn't like to give them enough blood.  They hook me up and I'm ready to go.  I have my appointment usually at 9 and I'm there until 3-3:30.  I don't want to scare you but I'm there that long because I had a reaction my first infusion.  Half way through(they increase the dose very slow) I got chest pains and my arms and legs were tingly and heavy.  They stopped the infusion. Gave me hyrocrotisone, and benedryl, and started the drip again.  Same thing.  I only got half way through the infusion and they sent me home.  They wanted me to try the remi again and I did.  They premedicate me before I go in now.  I have tylenol when I get there.  I take zyrtex for a week before my infusion, and I get hydrocrotisone when I get there.  My second infusion was fine.  They run my drip really slow.  Most people take two three hours tops.  They don't up my drip past 60.  My third infusion was fine also.  I go again the end of October.  I hope this works for you and please don't be scared.  I know I was the same way.  Oh, I still get chest pain(we think it is heart burn from the remi which is a side effect, I take prilosec for it now and my chest pain has went down alot.)  That is my experience with remi.  You will live and hopefully this works for you.
Posted 10/14/2009 12:41 AM (GMT 0)
You will be fine! The disease is so very draining, that you will be glad you did this. Huge numbers of people have been helped, both with this condition and with the others it was designed to treat. The side affects are minimal. Give it a chance to work.
My daughter had a sigmoidoscopy today, and the year of Remi. showed COMPLETE HEALING. Not a speck of mucus or drop of blood, down to one stool per day.
That said, it is a tough decision, I know and being on a big drug could have consequences, but playing the odds means taking a bit of risk for a well deserved reward. Hang tough.
K
Posted 10/14/2009 9:47 AM (GMT 0)
Thank you for your supportive attitudes and sharing your personal experiences. Well I'm leaving shortly for Boston, I'll post later.
Posted 10/14/2009 1:30 PM (GMT 0)
Good luck! I've been on Remi for 4 years now and feel better than ever. I too had a great colonoscopy; the colon looked totally healed...so I'm in remission from it. We'll be thinking about you!

Posted 10/14/2009 2:37 PM (GMT 0)
Well???? You're SO going to love Remicade- honestly, I bet it'll make you feel so darned good you'll won't ever want to go without it again! Yes, there are some folks for whom it doesn't work, but not too many- it seems like initially the drug kicks UC butt & you feel like a new person. It may or may not lose effectiveness after xxx amount of time. I'm in Massachusetts too- MGH is a great place to go for UC stuff. Oddly enough, I've only ever been to Beth Israel, just be3cause they had better availability for appointments. But both are great facilities.
Posted 10/14/2009 5:00 PM (GMT 0)
I started Remicade last week and saw results almost immediately. Can't wait for my next treatment next Monday. All drugs have side effects. So don't worry. I was really afraid too because of the risks, but it is working so well I am glad I finally started it.
Posted 10/14/2009 6:58 PM (GMT 0)
Well I made it! A little tired from worrying all night am going to bed early. No side effects at all and it only took 2 hours.

Of course too early to tell if it made a difference, we'll have to see...thanks everyone for helping me through!

Nick
Posted 10/14/2009 7:52 PM (GMT 0)
In the future you can use the time to take a little nap...
Sending good vibes your way!! Pamper yourself tonight.
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