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Crohn's Disease Forum » Treatment » Remicade/Infliximab » I get to try Remicade again.


09-15-2010, 04:33 PM   #1
vonfunk
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I get to try Remicade again.

So I had my first Remicade infusion 6 weeks ago. 2 weeks after that, the night before my second infusion I was in the hospital with some sort of mystery joint pain. I could hobble if someone got me standing, but I was unable to get off the stretcher by myself. I needed a nurse to lift my legs one at a time to and hang them off the bed, and pull me up. Couldn't really move under my own power.

Spent a week in the hospital, They did a bunch of tests. My GI said ti was probably "serum sickness" and I wouldn't be able to go back on Remicade. I'm still hobbling with a cane.

The doctor called today and said the tests came back, and we're going to give Remicade another shot.

Tomorrow I get to e-mail to co-ordinator and set things up again.

If it works I get to hold on to my colon for a bit longer (I've grown very attached).
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09-15-2010, 05:03 PM   #2
Silvermoon
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I see you are on 30 mg of prednisone, but when I was using Remicade, the doctor had prescribed 100mg of Solucortef and 500mg of Tylenol pre-infusion... just curious this was done for you (or for anyone else for that matter)... or whether or not it would interest you to ask about this... :shrug:

I remember having an "incident" after one of my infusions (about 8 days after though) where I literally could not move a muscle...much like what you describe... and same kind of thing..told it was an "infusion reaction"... it never occured to that extent again.... but as time wore on I noticed that arthralgia was one of the big things I suffered from in between infusions... would be good right after the infusion, and then it was like as it wore off that the aches would start and get terrible.... but it kept my gut from hurting.. so I kept doing it... lol

Anyway (enough babbling from the insane moon!! LMAO!)... I hope your next one goes much better... keeping my fingers and toes crossed for you and you in my thoughts....

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09-15-2010, 05:25 PM   #3
vonfunk
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The pred is a tapering dose from a flare up just before the remicade infusion, I was on 50mg originally.

They didn't pre-medicate me before my infusion. I might end up doing that my self, it's really just Tylenol and an anti-histamine. O was told it probably won't happen again, however if it does then we start looking at other options, unfortunately Humira is out of the question due to the cost, and I don't qualify for gov't funding because I have UC and not CD.
09-15-2010, 08:31 PM   #4
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I was going to ask about pre-meds as well. Do you know which antihistamine you will be taking? I took Benadryl for my firsy infusion and it knocked me out for the rest of the night basically. I asked my doc if I could take non-drowsy Claritin for my next treatment, and it was great. Maybe you could check with your doc and see if that's okay.

I'm confused though. What tests did you take that made your doc change his/her mind about you trying it again? Remi has been sooo awesome for me for almost 2 years now. I hope it works well for you. Good luck!
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09-15-2010, 09:27 PM   #5
vonfunk
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There were two different teams looking after my case. My normal GI and the Rheumatoid team. When I left the hospital, the rheumatoid team stated that it wasn't consistent with serum sickness. My doctor, I believe was looking for markers that would have indicated a lupus like reaction. I can't recall the exact wording. I'm just glad I didn't have to try and convince to let me try it again.

When I was in the hospital I had 4 x-rays, 2 CTs, an MRI and 2-3 blood tests a day.

As far as anti-histamines go. Benadryl is a first generation anti-histamine, and tends to work really fast. And releases a whole whack of histamine at once, which is why hospitals use it. It also has anti-anxiety properties and when you buy non-prescription sleeping pills (at least in Canada), they are generally just a large dose of Benadryl. However I've been going through insomnia, and the Benadryl sleeping pills did nothing for me.

If I decide to pre-medicate, it's either be Reactine, Allegra, or the generic stuff I get from the drug store that I don't know what it is. It might be a generic Benadryl. But the generic stuff that I buy seems to be fairly mild as the directions say take 2-3 tablets 3-4 times a day. I used to be allergic to cats, mold, dust, and basically everything outside, but it seems that I have mostly grown out of it, I just occasionally need something so the generic stuff seems to pretty much hold me over when I need it.

I know I won't see my GI before I start Remicade again. Mainly because the last time things were set up. I was released from the Hospital on a friday, called the coordinator on Monday, and had my infusion on Thursday. For me months to get the approvals in order, but once we were able to pull the trigger things happened really fast, I'll most likely restart my infusions next week.
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