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2nd Remi infusion

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Posted 8/18/2007 3:24 PM (GMT -8)

Had my 2nd Remicade infusion this morning; four weeks after my first one. My GI originally wanted me to have the 2nd infusion eight weeks after my first one. The infusion nurse was very surprised at that (as were many of you out there on the forum). My symptoms started to return last weekend with some blood, by the end of the week I was having a lot of urgency, and this morning I had to pull over and crap on the side of the road on the way to the infusion (my bad, I took too early of an appointment because I didn't want to kill three hours in the middle of the first really nice day we've had in awhile!).

Anyway, if it goes like last week I should see some improvement by tomorrow morning and by mid-week I should feel "cured."

Will give my GI a call toward the end of the week to see, depending on how things go, if I can continue to taper the Prednisone (I stopped the taper last weekend), and, more importantly, when my next infusion should be.

Today's bummer was the kid in the chair next to me, starting chemo for cancer when he should be getting ready to go back to university. So, sucky as my life has been recently at least I've not been dealt THAT hand.

Having to pull over was a small price to pay for the most gorgeous afternoon at the community pool all summer. Not too hot, not at all humid, for some reason the pool wasn't even crowded and one of my girfriends arrived shortly after I did. I really needed a nice, calm day and I got one! Brought my book along, Water for Elephants -- I highly recommend it by the way. Now I'm ready for whatever this week will throw at me.

Meesh

Posted 8/18/2007 4:51 PM (GMT -8)
Hey Meesh, glad the infusion went well; but I will tell you that everytime I go in for a treatment that I'm reminded too that life just isn't so bad. I see people in there that spend all day, three times a week just trying to live. Amazing huh? It makes you put a whole new perspective on things. Glad you had a good rest of the day....sorry it started out kind of icky but hey, when a beautiful day takes hold of you, there's nothing like it.
Posted 8/18/2007 5:38 PM (GMT -8)
Meesh, glad to see you got back in for your second infusion. Hope it helps you again. Keep us posted.
Posted 8/19/2007 9:54 AM (GMT -8)
Well just as with the first infusion, the next day (today) saw a notable improvement, just two bathroom trips but still pretty urgent need to go when I had to. Tummy settled down for the day pretty quick though.

Wondering what my GI will recommend for the timing on my next infusion. Since he didn't have me go back two weeks after the first and my symptoms recurred at three weeks, I am thinking I should ask him if four weeks would be a good interval. And so glad I took good advantage of yesterday's weather as today is kind of yucky out ;-) Rainy morning, now pretty steamy out there.
Meesh
Posted 9/18/2007 3:11 PM (GMT -8)
I was just curious how you are doing with your treatments
Posted 9/18/2007 3:34 PM (GMT -8)
Funny you should post the question today of all days. I am two weeks into the final taper of Prednison (alternating days of 5 mg and 0 mg) and was going to be off it completely in a couple of days, but over the last three weeks I had been having blood on and off, and lately more on, and my mornings have been getting bad again, again, just sporadic, still much better than before the Remicade. Like, Monday lots of D, today, almost normal.

So I called the GI and he wants me to continue the Pred at the current dose, go back to Rowesa nightly (ugh) and see him in a week or two.

I am about a month from the last Remicade, which is when thing deteriorated last time. I don't want to think I need it monthly, but it DOES work for a few weeks each time. So I have an appointment a week from Friday and we'll see how it goes. Hopefully the Rowesa will do the trick and I'll just be on the Prednisone at this low dose until my next Remi infusion.

Meesh

Posted 9/18/2007 6:57 PM (GMT -8)
Meesh, thanks for the update. Sorry you weren't able to get off the prednisone but it will happen eventually. I was wondering if you would be doing any better had your GI ordered those loading doses of Remicade in the beginning - maybe so, maybe not. There has to be a reason that the drug company recommends those initial infusions at like 0,2 and 6 weeks. I don't know if maybe you could start over and get those in ??? Also, when I had trouble getting off prednisone, I got down to 10 mg and I went very slow and from 5 mg I went to 2 1/2. Just an idea. I want you to be able to get off that evil stuff. 

Posted 9/18/2007 7:14 PM (GMT -8)

Thank you for posting that Meesh

I go for my first one Friday dont no anything about it ....so  mabe i will have good news to

Thanks :-)

Posted 9/18/2007 7:32 PM (GMT -8)
Hope you feel great after this one Meesh. i went for my third one today as well. This drug is the my personal miracle drug. i have not had any bleeding or loose bms since the first infusion. This is the longest if have gone (6 weeks) being healthy.

It is always important to remember someone else out there always has it worse. I try not to take life to seriously. I have UC so i choose to embrace it and make the most of it. I really hope that remicade works as well for you as it has for me.
Posted 9/19/2007 10:41 AM (GMT -8)

I have found that 6 weeks works best for me. But I did start with the initial 2-4-6 weeks. Eight was just too long and my symptoms would become severe.

Danno

Posted 9/19/2007 12:36 PM (GMT -8)
Well going back to Rowesa last night semed to kill the blood I was seeing, so that's good. But I tell you, I did NOT miss those GD purple stains the next morning. No matter how careful I am, no matter how much I take a cleaning wipe to the toilet when I am done, when I go into the bathroom later I see purple stains on toilet. So I hope being back on Rowesa is short term. Oct 13 will be eight weeks since my last infuision and so time for the 3rd, hopefully I'll be able to finish the Pred taper then.
Meesh
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