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Remicade thoughts...

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Crohn's Disease
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Posted 5/10/2011 4:16 AM (GMT 0)
I'm not sure what to think. We've started lengthening the time between infusions, 2-2-4 (just had my 3rd one last week) and in the middle between 2-4 I started getting symptoms of a flare, and it's continued since. I'm going around 10 times a day, most of the time it's a little bloody D with a lot of mucous, associated with a lot of cramping pain. Most of the time I'll go but then afterwards feel like I haven't emptied. Right before this started I was having some pencil thin stools when they were semi-formed. I had drank too much apple juice (normally one small glass is fine) but right after that is when all these symptoms started. I know 10 times a day isn't as bad as it could be, but it's frustrating. I haven't had a fever either.

I'm worried that the Remicade isn't working, and I know it could be too early to tell, however, right after my 2nd infusion I was beginning to feel GREAT, I was having a lot more better days than bad. I see my dr on Thursday, but I don't know what he'll say. I want to stay with the Remicade and give it more time.

I'm sorry this was all over the place and hard to understand.
Posted 5/10/2011 6:35 AM (GMT 0)
I have this problem , kind of sort of . I've been on remicade for a year and a half and I would only get
that way when its about time to refill up and the pump tongue . Give it time it's not a one hit wonder
drug like some people peg it out to be . I'm on the two month plan true, I should be on the 200ml six week
plan but as it sits (that drug is not cheap) I can eck it out for two weeks with pencil thin brown stains /mucous
my bill right now is 9302 dollors and some change thats my share after my bluecross paid ..... whats left in
my wallet ? (dust )
Posted 5/10/2011 8:01 AM (GMT 0)
We are all different. Give it some time.  I take humira and i still use the r/r about 5-10 times a day.  sgirl.  talk to your doctor about companys out there, that help with the remicade cost.  my doc gave me a number to help with my Humira. one dose $13600.  Crazy yes.  after insurace it was $550.  i pay $5.  Pretty excited i was.  Do not know how long it is going to last. 
Posted 5/10/2011 12:22 PM (GMT 0)
I had been on rem since april of 2010, and the symptoms in my throat it helped, I've had cd for 40 yr's, and it is always inflammed at resected site, always inflammed, so when I started out with rem, it cleared my throat up, great! but it never budged my cd at resected site, in fact it made it worse, made me have, I feel muscle sore in my back(bad) and arthritis in back and shoulders, now that the rem is slowly riding itself from my body, I'm beginning to feel better, less pain at resected site, on 4/30 and 5/1 I had crampy sessions that I had to take enough oxy's to make it work like a oain shot, both saturday nite and sunday nite, really bad until I would have bm, then it would ease up and go away, I think that was part of withdrawal of the rem. I see new gi today and am going back to basic, with asacol, still will get pain med's just in case I'm wrong. But I don't think Iam. I know my disease better than any gi. nothing will budge that inflammtion, my opinion is keep it at bay, keep it out of my throat and mouth. my issues are more that I have 9ft of small bowel over time that has been cut out, so I have short bowel syndrome like problems. some that have newly dx cd I feel rem is good drug, but for old cd like mine, I feel maintenance drugs and pain med's to keep me comfortable, and that is life. I do artwork, and my medium is raw material, so I'm always cutting my hands, rem makes every cut get infected, I'm sick of it. I hope I'm right. good luck to you guys

AG
Posted 5/10/2011 2:20 PM (GMT 0)
IT took, me up until the 3rd infusion to start working...Personaly I think i should have it done every 6 weeks but am am at the 8 week mark.. Sooo if it all goes to "plan" this time round, i should start feeling yucky in about 2 weeks. But if i am lucky then i will be ok until the 1st week of june. Give it time. Good luck!!
Posted 5/10/2011 5:06 PM (GMT 0)
I had my first course Friday. While I'm seeing no symptom change, I'm already seeing a marked improvement in my JP drain output. I'm quite excited.
Posted 5/11/2011 1:33 PM (GMT 0)
Definitely give it some time. You just finished your 3 loading doses. I have been on remicade for 6 1/2 yrs, and still going strong!
Posted 5/11/2011 3:39 PM (GMT 0)
Most of our meds take time to reach their full effectiveness. That being said, even though I am in remission, and have been for quite some time, the thing that has given me back my life regarding trips to the bathroom is Xifaxan. You might want to ask your doctor about doing a 30 day trial to see if it helps and then you can go from there. If it helps for 30 days, and then you go off for a few weeks and you go back to running to the bathroom, then you can see if you can get your insurance to authorize continuous use. I have now been on it for about 5 years. I went from about 15 - 20 trips a day, to 5 or 6 most days. I still have my bad days, but they can usually be tied to something I ate.
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