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Did a bad thing..but I think I got my answer...

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Ulcerative Colitis
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Posted 9/2/2009 2:50 PM (GMT 0)
I was pretty sure that it was the Lialda causing the swelling....So I took a chance and went off it for 4 days...By the end of 3rd day the swelling went almost all the way away. I started back yesterday and The swelling started back...

I have a hard time typing because my fingers are so swollen and stiff..My neck gets stiff and my face around the eyes is so puffy I almost look like I have a black eye..My sinuses feel swollen but there is no snot...Oh and the gas stopped.

As far as GI symptoms...I think there was a little bit of urgency increase and maybe a tad bit of mucus but that's it.   I see the GI tuesday.  Somethings gotta give.  I can't live like this..

Do you think it would help to take only rectal meds and would they work the same way just a different delivery route?  I am thinking about asking to try sulfazine even though 25 years ago I had a reaction to sulfadrugs.   What are some of the side effects with that?  I know what the makers of it say, but we all know that is often only the tip of the side effects...

Posted 9/2/2009 3:18 PM (GMT 0)
Some people just can't tolerate the 5ASAs, and it really sounds like you can't take Lialda. Have you tried any of the other oral 5ASAs? It *could* be one of the inactive ingredients that is causing the problem. I wonder if Colazal would be better, as it's active ingredient isn't mesalamine, but is very similar, as it's still a 5ASA. You should be on rectal meds regardless of whether you're on oral meds or not! The enemas might reach up high enough to cover all of your inflammation, but then again, they may not.
Posted 9/2/2009 3:55 PM (GMT 0)
I would suggest you try the Colazal....at least at a low dosage and increase to see if it's any different.

The rectal 5ASA meds do have a bit of sulfa in as preservative...but if you started with a low dosage of the enemas 2g, that might be OK for you.

You're in a tough place regarding meds....frustrating for you.

The other option is the steroid topical ones...

quincy
Posted 9/2/2009 7:49 PM (GMT 0)

Doesn't it make you mad when the meds work on the UC but the side effects make you sicker?  That is what happened to me and I tried all you have - all mesalamines do that to me - give me flu-like symptoms, etc.  I did try Colazal but could not tolerate doses big enough to help.  I had to go to prednisone and tried 6 MP (could not take that either).  Best thing that has helped are the rectal meds with steroids.  Cortifoam and anusol have helped me some.

ElaineNY

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