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Ulcerative Colitis
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Posted 11/27/2010 6:46 PM (GMT 0)
Okay we are desperate. Anyone try this with any results (UC related ie Haily's letter)?
Posted 11/27/2010 9:17 PM (GMT 0)
I asked my doctor if I could try it and she seemed reluctant. I would try anything.
Posted 11/27/2010 9:55 PM (GMT 0)
That's another thing, I don't know where I'd get it from if we "wanted" to try it, but I figure I could persuade someone?
Posted 11/27/2010 10:27 PM (GMT 0)
I don't know, I tried to persuade, it's not too easy. I guess it's a liability to let patients try whatever they want. My doctor has been pretty open about letting me try the basic antibiotics and I am thankful for that because I would have continued to think I had an infection FOREVER. At least now I am somewhat convinced that whatever I have, infection, bacteria, virus, UC, whatever caused it, probably isn't curable with mainstream antibiotics. Rocephin, I haven't tried, does it treat more different bacteria/parasites than flagyl/cipro/xifaxin/doxycycline? I would love to try whatever is available but I am sure it wouldn't be helpful, I am sure studies have been done that show these drugs ineffective otherwise, I will raise my hand to be the guinea pig. I don't mind trying something that may not do anything so long as it doesn't make things too much worse. They can't really get worse at this point although I am appreciative of feeling stable today. Who knows what tomorrow holds.

Here's some info on Rocephin:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000848
Posted 11/27/2010 10:42 PM (GMT 0)
I'll try a pubmed search for rocephin and UC but I'd bet nothing's been done. It's funny how shoddy some of the science behind this stuff is. My daughter's current GI wants to prescribe methotrexate even though all trials done and the cochrane reviews (conducted by her other GI) show that it is not effective for UC. Despite that, he's willing to try it out based on his clinical experience. Well, that's much scarier than rocephin in my book, but I'm sure he wouldn't prescribe that because there are "no trials". It's a little infuriating. I still think I'd be able to get it from somewhere - so far, I've managed to try quite a lot of stuff that involved jumping through hoops. Next might be diflucan. The thing is, these are strong drugs and my daughter really needs to be monitored carefully if she goes on them. I wonder if anyone else has managed to get it?
Posted 11/27/2010 10:49 PM (GMT 0)
Have you tried to speak directly with Hailey's mom? (Maybe she'll see your post....)
Posted 11/27/2010 10:55 PM (GMT 0)
I've taken a bit of Diflucan, I got a bad yeast infection from the antibiotics I took and I had to take it 2x. Things did calm down after a double dose of Diflucan. Diflucan isn't difficult to get. IV Rocephin would definitely be hard to get. I've seen some people on the Lymes board mention oral Rocephin but I am not sure where you would get that. Have you thought about working with a rheumetologist instead of a GI? Maybe they would be more willing to try these drugs since they prescribe them more often? I have thought about seeing some other specialists but I've been feeling pretty stable lately so I've put it off. My GI has mentioned methotrexate for me. I put up a post about Methotrexate a few months ago and a few people responded positively. I agree that it's a nasty drug that I would rather not take but is it better or worse than Remicade/Humira?

I just looked it up, oral rocephin is called Ceftin. It says it is similar to Keflex and Duricef, both of which I have taken in the past - prior to being diagnosed with UC.

Post Edited (notsosicklygirl) : 11/27/2010 4:01:20 PM (GMT-7)

Posted 11/27/2010 11:25 PM (GMT 0)
Songlady, yes I have, it's been very inspiring. nssg, not a rhuemy but we are consulting a really great immunologist/allergist/infectious disease expert who is also a pediatrician. we'll see how that goes...
Posted 11/27/2010 11:56 PM (GMT 0)
I went to an immunologist/allergist and it wasn't too effective for me. Maybe I will give the Rhuemy a try. If I do I will give you an update on whether it was useful. Please keep me updated on your progress. I am always looking for alternative treatments. I'd much rather try Rocephin than the alternatives.
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