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So dependent on Remicade!

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Ulcerative Colitis
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Posted 9/10/2009 4:20 PM (GMT 0)
Elaine,

I don't have an answer on the pred question. I was on prednisone in varying dosages for 2.5 years, tapered off with the pain, and have not been on it since. Prednisone, even at low doses, does not come without long term side effects. However, it seems reasonable that you would like to live out your years with the ability to travel and enjoy life. You might want to have an honest discussion with your GI. Maybe if he/she knows that you are not so worried about long term side effects, but more wanting to enjoy life, you can remain on low dose treatment?

Sue
Posted 9/11/2009 12:49 AM (GMT 0)
My doctor said the actually prefer Remicade to prolonged use of prednisone. Most people don't think of prednisone as being as detrimental as it actually is. It works for UC, but its not good for long-term or even chronic management. For now I am happy and healthy with Remicade only. Earlier this year I spent 4 solid months sick and was hospitalized 3 times (15 days total) for UC during this time. It is wonderful to have my life back, feel healthy, and not have any UC symptoms.
Posted 9/11/2009 4:51 PM (GMT 0)
Lonie,

You can taper off of remicade? How soon can patients do that? I've been on Remicade since December 2008. I've never had the slightest stomach pain. I am at the 8 week interval and would love to get off all medicine eventually. The only med that I take is Remi. Any guidance?

Nick
Posted 9/11/2009 4:56 PM (GMT 0)
Hi Nick! Glad the Remi is working well for you too. I had a colonoscopy about a month ago, and the doctor said that my colon was clear of any polyps, ulcers, and looked really good. Also, the biopsies came back clear. So, his opinion was that I could start doing twelve week intervals for my infusions instead of every eight weeks. If this works fine, then we'll try and go as long as I can without infusions and see how it works. I think it will be a relatively long procedure getting off, but we hope to just be on maintenance meds if it all works out!

Posted 9/11/2009 6:11 PM (GMT 0)
After more than 20 years of dealing with the inconvenience of UC, I am so very grateful that there is Remicade.
Posted 9/11/2009 7:02 PM (GMT 0)
cry Well I finally gave in to my doc and went on Remicade last Nov.  It was an absolute miracle--total remission right away.  But--always a "but"--just before my 6th infusion, the joints in my hands swelled up and really got stiff and sore.  The next infusion took care of that, but 24 hrs later, I developed a small swelling on my upper arm-red and tender.  That gradually went away. Now I feel like I've aged 10 yrs overnite--joint pain that travels around from one place to another, moderate edema all over and a sore throat.

I don't know what is from the Remi and what is an infection from my immune system going downhill.  Really gets to me when I wake up in the middle of the night and wonder just what my body is doing now. Really scarey--I'm 70 and things are getting a little creaky anyway.

The doc took a blood sample and sent it off to check for antibodies.  No news yet.

Anyone else have to get off Remi because of antibodies??  Of course, it doesn't help that my husband passed away in April of NH lymphoma, so naturally I'm convinced I'm for it, now!  Guess I need to practice my controlled breathing more!!!

Thanks for a place to boo-hoo.

Michigoose

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