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Remicade still not working - scared!

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Ulcerative Colitis
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Posted 10/29/2009 6:52 PM (GMT 0)
Hi All,

I was wondering for those of you on Remicade how long did it take to work and what improvements have you seen?  I had my 4th infusion on Tues Oct 27th and I haven't seen any improvements yet.  I have been in a flare since Oct 2008 and have lost 18 lbs.  I just want to feel better and was really hopeful that Remicade will work, but it hasn't yet.  Does this mean its not going to work for me or is there still a chance it will.  I am getting really scared...if this doens't work what will...or is surgery my only option left?

Blue5

30 year old female with Pancolitis

Posted 10/29/2009 6:56 PM (GMT 0)
I can't comment on Remicade, as I haven't been on it, but what all have you tried (including Rx meds, OTC meds, supplements, diet, etc). It helps us suggest things if we know what all you've tried.

Also, how bad are your symptoms right now, and how good to you want to be? Do you want to be your normal, pre-UC self, or are some symptoms ok?

I hope you find relief soon.
Posted 10/29/2009 7:05 PM (GMT 0)
Hello and sorry to hear the Remicade is not helping you yet.. As for me it worked overnight. I had my first infusion Oct 22nd and haven't bled since.. Have you tried Humira yet? My GI said that if Remicade didn't work for me he would try Humira next.. Good luck and hope you start feeling better soon!!
Posted 10/29/2009 7:07 PM (GMT 0)

I was on Pred from my 3rd infusion to my 4th one.  My GI hoped this would jump start my healing, but so far it hasn't.  I really don't want to take any more pred as I have already developed osteoporosis at sucha  young age due to Pred.  Tried the low residue diet, didnt' help.  As far as supplements: VSL #3, Fish Oil, recently started flax seed oil pills and psyllium husk.  Oh and I take 9 pills of balsalzide disodium a day (generic to colazal)

I have 4-6 bm's a day, still blood, sometimes formed, sometimes not.  Still have urgency and can't gain any weight.  I am not sure if pre-UC is even possible anymore. 

I guess I should...what do people consider as remission...I have lost so much weight that nothign fits and I look sick.

Blue5

30 year old feamle with Pancolitis

Posted 10/29/2009 7:23 PM (GMT 0)
Given that you have pancolitis, I think it's a bit odd that you're on colazal. My understanding is that it only treats the left side of the colon, so the upper-most reaches of your colon may not be getting medicine. Also, have you ever used rectal meds? What about 6MP or Imuran? I know it may sound silly to give these "lesser meds" a try when Remi doesn't seem to be working, but you never know.

For me, remission so far is a complete absence of symptoms. When I was flaring, though, I'd have been happy to have just gotten rid of the urgency!
Posted 10/29/2009 7:26 PM (GMT 0)
Hi Blue5-

This is my first post, I am going to post one about my daughter (she is 14 and developmentally disabled), who is the one with ulcerative colitis, but I saw yours and thought I'd comment. She too has tried Remicade after IV steroids, 5ASA's & everything else failed to get her any where near a remission (she was hospitilized for her first flare for a month, non stop oozing bloody bms).
When we finally tried the Remicade, it took a full two weeks to work, and then she had two weeks of remission and started to bleed again. Long story short, a year later we are still tweaking the doseage and frequency of the Remicade infusions to keep ahead of her flares. She had a nice long remission for 6 months.
Do you ever become anemic? She was recently hospitalized for anemia, whilst in the hospital they gave her Remicade since she was due, but bumped her from 5mg/kg to 10mg/kg. That was last Friday and she is just now showing signs of being blood free. We are still evaluating whether it works or not, but we want to avoid surgery if at all possible.
You can try the other anti TNFs, Humira and now there's Cimzia, they are very similar to Remicade, but different enough that they might work for you better.
good luck and I hope you get into remission soon and feel better!

Pam
Mom of 14-yr old with Pancolitis
Posted 10/29/2009 8:09 PM (GMT 0)
Supposedly Remicade can take up to 5 infusions to take effect; it it hasn't started to work after the 5th infusion, it likely won't. I'm really sorry it hasn't worked for you so far. If your insurance will cover it, usually the next step is Humira. Some policies won't cover it because it isn't FDA approved for UC; nor are the other biologicals.

Have you had a surgical consult to find out about that option? It may be a good time to do that; you don't have to decide on surgery unless you're ready for it, but having good information on all your options can help you feel better about whatever decision you make.
Posted 10/30/2009 3:12 AM (GMT 0)

spooglesmom said...
Hi Blue5-

This is my first post, I am going to post one about my daughter (she is 14 and developmentally disabled), who is the one with ulcerative colitis, but I saw yours and thought I'd comment. She too has tried Remicade after IV steroids, 5ASA's & everything else failed to get her any where near a remission (she was hospitilized for her first flare for a month, non stop oozing bloody bms).
When we finally tried the Remicade, it took a full two weeks to work, and then she had two weeks of remission and started to bleed again. Long story short, a year later we are still tweaking the doseage and frequency of the Remicade infusions to keep ahead of her flares. She had a nice long remission for 6 months.
Do you ever become anemic? She was recently hospitalized for anemia, whilst in the hospital they gave her Remicade since she was due, but bumped her from 5mg/kg to 10mg/kg. That was last Friday and she is just now showing signs of being blood free. We are still evaluating whether it works or not, but we want to avoid surgery if at all possible.
You can try the other anti TNFs, Humira and now there's Cimzia, they are very similar to Remicade, but different enough that they might work for you better.
good luck and I hope you get into remission soon and feel better!

Pam
Mom of 14-yr old with Pancolitis


I was bleeding or about 15 months. When I used Zosyn and Flucanozole, it stopped. When I stopped them, it came back. Then, after 2 days of Rowasa, it has stopped ever since.
Posted 10/30/2009 2:22 PM (GMT 0)

For me, it was after my 7th infusion, that I saw a marked improvement.  That was 4 years ago, and I am doing great.  I have recently changed to a gluten free diet and the improvement has been unbelievable.  I also started munching on sunflower seeds during the day and for me, this really has changed the way I feel.  I am able to have normal bm's, and no pain, blood.  It has been a hard road to find my way down, but I think I have hit on a good plan for my body.  I still am tired because my iron is low, so I get Venofer with every infusion, which just happens to be in 4 hours from now.

Good luck, and hang in there....

Posted 10/30/2009 2:27 PM (GMT 0)
I also think you should seek a surgical consult. In the event you have to eventually have surgery the consultation will provide you with information you need to make an informed decision.

Sue
Posted 10/30/2009 4:07 PM (GMT 0)
I have had 2 remicade infusions and my 3rd is coming up next friday (11/6). I saw no improvement after my 1st infusion. a week after my 2nd infusion I didn't have any blood at all and was feeling a whole lot better it seemed. Then about 1 1/2 weeks ago I started having blood again and Left sided pain. I hope after the 3rd it wil go away again. I am not supposed to see my GI dr for 3 months,(longest I have gone in 8 months). I am down to 3 mg of prednisone and want to be off of it totally so I am not going to tell him the bleeding is back because there is no way im upping it again!
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