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Third Remicade infusion at 10kg and still nothing

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Ulcerative Colitis
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Posted 9/17/2009 8:54 PM (GMT 0)
Yesterday I had the third loading dose of Remicade.  The doctor even raised it from 5 to 10 kg.  I still have seen no improvement what so ever.  Is this even possible?  I can't believe it would just not work being such a strong drug.  I don't even feel flu like from it today.  Crazy.  Has it not worked for anybody else?
Posted 9/17/2009 9:02 PM (GMT 0)
i think many people do get relief from Remicade, although it seems that for many, the relief is temporary. My son had an infusion in the hospital and it worked immediately and we were thrilled. However, within 4 months, it stopeed working for him, even after his dose was bumped up and the frequency was moved from every 6 weeks to every 4 weeks. For a short while he felt great, but ultimately ended up in his worst flare ever when the Remi stoppd its magic. Everyone is different - maybe something else will do the trick or maybe your body is taking a longer time to react?

Posted 9/18/2009 12:05 AM (GMT 0)
I also had my 3rd loading dose last Friday September 11 and don't see a differance. I am back to the bathroom every hour and feel depressed. I was so hoping this would help. I'm still on predisone at 40 mg and going to bump it up to 50 in the morning. This was with my doctors appoval. I will see her Monday and hope things calm down by then.
Posted 9/18/2009 12:09 AM (GMT 0)
Man I'm sorry it's not helping you yet. I just got my third loading dose on Tues, September 8. It's helped me a lot...formed stools and only 1-3 times in potty a day.

I have heard that it can take up to 7 infusions to really help though.
Posted 9/18/2009 2:37 AM (GMT 0)
I heard you should feel better right away. Most people are feeling good within two weeks of first infusion. My third dose was even double the strength at 10kg. That is the highest it can go. I have tapered to 30mg of prednisone. I talked to my GI on Tuesday and he said to bump it back up to 35. I waited because I thought the infusion yesterday was going to make me feel great. I just can't get myself to up that dose of the steroids. I look at my face in the mirror and think I would rather spend my day in the bathroom than all the bloating. I am so steroid dependent. Been on them since last December off and on. Will be starting Imuran soon after lab work. It better work.
Posted 9/18/2009 1:33 PM (GMT 0)
I'm sorry to hear that- I'd be discouraged too! My first Remicade dose was like a miracle, I felt better within 2 days. Vastly improved! That lasted about 2 weeks- I was not able to go thru the recommended loading dose schedule, due to developing strep pneumonia, which threw everything into disarray. After I got out of the hospital for that, I went back to Remicade (at the 5mg/kg dose), but it never had that "oomph" like the first dose. We bumped it up to the 10mg/kg dose, every 6 weeks, & I'm holding steady at that dose currently. If I didn't experience the initial huge relief with it, I doubt I'd continue on it.

Posted 9/18/2009 1:40 PM (GMT 0)
It took until my 7th infusion four years ago for some marked relief. Once that relief came, I felt like I had my life back... Hang in there....
Posted 9/18/2009 4:59 PM (GMT 0)
I guess I will keep going if there is any chance at all down the road. I am really stuggling today. Hearing that it took you seven times gives me some hope.
Posted 9/18/2009 5:32 PM (GMT 0)
Boxermom2
I don't want to be the negative story person, but I was on Remi - 5mg/kg every 4 weeks for approx 7 months. It didn't work for me and I had my colon removed at Mayo in MN on 8/21/09. yeah I didn't try Imuran/6MP because I had failed everything else and was getting worse every day so I couldn't/wouldn't wait the time that it would take for it to possibly work and I had some medical concerns about taking it. My GI said he could try to get me Humira but didn't think it was worth it since I was failing everything else too and my colon was in really bad shape. After surgery my surgeon told my husband (and later told me) that it was a good thing that I had it taken out and didn't try to do any other meds because it was in such bad shape.

That being said, I went into my last c-scope prepared for the doctor to recommend surgery and I was much more open to surgery than to more meds due to family history of cancer and personal history of pre-cancerous cells and a crappy quality of life (I was never in remission). I am one of those people that figured my colon was going to come out sooner or later - I was just hoping for later rather than sooner but I didn't win that battle and I'm ok with that. I wasn't willing to go through what it might have taken to try to possibly hang onto my colon for a few more years. I know that there are many who will do whatever they can to keep their colons. IMHO it's a personal decision that we all have to make. I know that there are going to be potential problems with my pouch once all 3 surgeries are done and the problems can occur for as long as I have it which will hopefully be for as long as I live. I know that I will have an adjustment period once all my surgeries are done. For me, this is totally acceptable compared to the life that I was living (or not living) with my colon and UC.
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