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Crohn's Disease Forum » Treatment » Remicade/Infliximab » What to expect starting remicade?


01-09-2013, 02:15 PM   #1
nogutsnoglory
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What to expect starting remicade?

I am probably going to need to start Remicade. Is there any way to have the infusion at home or I need to go to infusion center?

Does the hospital need to special order for me or will they just have bags ready?

How do you feel after an infusion? How long are they?
01-10-2013, 12:11 AM   #2
Jennifer
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Hey nogutsnoglory.

I made a thread not too long ago where I asked some similar questions. Here's my thread: http://www.crohnsforum.com/showthread.php?t=42889

I don't think it can be done at home. You have to be monitored just in case you do have an allergic reaction. Mine is being done next week at my Rheumy's office. They said everything would be all set up and ready to go, I just have to bring myself and something to do. I'm told that its possible to feel tired after the infusion due to the antihistamine that's usually given to help avoid an allergic reaction. I'm also told by my doctor and nurses that the first one may take between 3-4 hours but should go down to 2 hours afterwards. They said to bring movies as they have a TV and DVD player and any games or books or whatever I've got cause I'll likely be very bored. Also a tip, have some Benadryl handy at home.

Good luck! I'm starting on the 14th.
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01-14-2013, 06:02 PM   #3
AlliRuns
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Starting soon too. Finally got approval today. Been waiting since November for an answer.
01-17-2013, 06:12 PM   #4
Trysha
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Had my first Remicade today and have been very nervously anticipating it.
Everything went of without a hitch , arrived on the unit at 12noon and left at 4pm.
No problems and I am now home and have been able to eat something at long last.
I think it looks good right now.
Second infusion will be in two weeks, on March14th.
Won't be so nervous next time.
Cheers!
Trysha
01-18-2013, 11:18 AM   #5
nogutsnoglory
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How much are you guys paying for co-pay?
01-18-2013, 11:22 AM   #6
AlliRuns
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I don't have to pay anything. My coverage is 100%, until I get released and lose my current plan. Got a call from the Pharmacy that supplies the Remicade last night, my first infusion should be next week.
01-18-2013, 11:38 AM   #7
nogutsnoglory
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I think I paid $50 on Humira then got a card and paid $5 per injection.
01-18-2013, 12:42 PM   #8
Trysha
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Mine is covered by the Ontario Drug Benefit plan (ODB)
All I had to pay was a small prescription charge of $2.83.
Quite a relief to be covered.
Trysha
01-18-2013, 01:10 PM   #9
AlliRuns
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Trysha, did you have to go through a big ordeal to get covered by ODP? I'm going to lose my coverage soon, may have to apply to ODP.

P.s. Where in ON are you? Im in Kingston.
01-18-2013, 06:21 PM   #10
Trysha
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Hi Alli
It was a big deal for the GI and the Remicade coordinator and a long wait for me.
I thought maybe since I am a senior it would not go through.
The process started last June and in September the GI had the go ahead.
Unfortunately it was cancelled due to some unexpected renal issues I had.
By November 30th I was in a difficult crohn's situation and the GI said it was very urgent that they start the Remicade.
This time it took the month of December to be processed.
I was then scheduled to start Remicade January 3rd but this was rescheduled due to my
getting the flu virus so it was not started till yesterday.
The Remicade coordinator notified me this week that they had been notified by the government that it would be covered by the ODP.
Previously the government official said they must first try Methotrexate but I could not have it due to the existing level of renal failure, this drug is contraindicated.
Since imuran and prednisone had failed me they allowed the Remicade which has to be reviewed by them after three months.
Although tired today, I am feeling better already and it seems to have banished the nausea and some of the pain. I am quite surprised at this and cautiously await events, hopefully there won't be any. Marvellous if it keeps up.
I live in the area of Toronto.
Hope this is helpful to you
Hugs and best wishes
Trysha
01-18-2013, 06:51 PM   #11
rygon
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If you never had an nfusion before you may get a hot, dizzy feeling ( I did on my 1st iron infusion which they stopped because of it, and I still feel a little dizzy near the end of my infuson) Apart from that its really boring, although I have some great nurses to keep me entertained

Your 1st few infusions will be the longest but I know Leeds NHS and ourselves (grimsby NHS) have got them down to 1hr for the infuson and no waiting time afterwards, which is pretty sweet
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