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Flare up after 6 months of remicade.

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Ulcerative Colitis
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Posted 5/15/2011 3:26 PM (GMT 0)
doctor was just talking about taking me off Imuran. still on 50 daily with remicade every 8 weeks. I am starting to flare up again and steroids never realy helped. I was on 80mg for 6 months before my first remicade infusion. I really thought remicade was for me. apparently it stops working just like all the other drugs have. I am still on lialda 4.8g daily as well. any suggestions? should I try Humira? how is it different than Remicade? and also anyone know of the drug program where I can get it for free. as I have no insurance.
Posted 5/15/2011 3:58 PM (GMT 0)
Go see a Homeopathic Doctor. Nothing to lose at this point.
Posted 5/15/2011 4:02 PM (GMT 0)
Did you and your doctor discuss upping your dosage of Remicade? Sometimes the loading doses throw you into remission and then the every 8 weeks schedule isn't enough to keep you there. Maybe you need it every 6 weeks, or 7.5mg/kg.
Posted 5/15/2011 4:07 PM (GMT 0)
haven't discussed upping it. I hear that they increase the dosage frequency. I just wonder, that will give me 6 more months then I have another flare? it just seems to be a cycle with this darn disease. I have been in the hospital every year. just tired of it. talking to my doc on wednesday.
Posted 5/15/2011 4:52 PM (GMT 0)
Hi Patrick....totally sucks you're flaring again.
I would think that if you've tried the Remi that Humira would be a next move.
It's possible there's a drug program...maybe when you see your doc on Wednesday he'll be able to tell you.

Are you using any rectal meds at all? if yes..which ones. Maybe playing with those (from mesalamine to steroid?) could offer some relief.

I'm curious at this point what exactly your flare is like...and when exactly did you notice changes towards a flare? How were you once you started the Remi?

I hope you have a good discussion with your doc.

Keep us posted please!
quincy
Posted 5/15/2011 5:00 PM (GMT 0)
basically I was in the worst flare I've ever had on 80mg steroids, 4.8 grams lialda. been through the whole gambit of rectal meds, steroids, 5 asa's etc. they never helped and I don't think steroids helped either. unless my goal was to no fit in my clothes and have moon face. ha. but basically I started having cramps and sharp pain in my gut last week. a bit of blood and mucus. now my poo is broken up and not very much in the morning. all signs that I'm going down hill. and when I do it goes fast. I do have a bit of anxiety and depression that I'm trying to deal with as a result of how this disease has kicked my butt. the thing that stumps me is that I just had My remicade infusion on the 4th of may. so not sure why I'm acting up so soon after. that is why I don't think its working for me any longer. Humira may be a next step I just found an assistance article that I'm printing off to take with me to my visit. Has anyone Tried LDN? (low dose naltrexone) ? Good news is there is a stem cell trial for UC! however I do not qualify because of being on remicade. but if the doc takes me off I am all over some stem cells!!!!!
Posted 7/12/2011 10:04 PM (GMT 0)
If you could share, what are the details regarding the stem cell clinical? What kind of stem cells and who is running the trial?

Thx
Posted 7/12/2011 10:08 PM (GMT 0)
Try some rectal meds with the Remi to see if that gets you over the hump. I know many people that tried it with success. Hope this helps. Take care, I know how frustrating it is.

Posted 7/12/2011 11:13 PM (GMT 0)

You can talk to your dr. about upping your doseage and going in at 6 weeks instead of 8.

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