Flagyl??

[izzi'smom]

DD has been on Flagyl twice, both times with no improvement.

She flared a few weeks ago, we put her on Prednisolone, she improved, we started to wean her, her symptoms are back and worse than before (just like the first time she was on Prednisolone.

Her MD wants to start her on Flagyl, even though her tests done 2/3 weeks ago were negative. The nurse tells me her white cell count would be off (the steroid masks it) and when I asked about a stool culture she said..ummm...??


Anyone have any experience with this? Flagyl is NASTY and I hate to put her on it because she MIGHT have an infection...really?? Last time there was a lot of vomiting involved with getting 2 doses a day in her (which stinks because you're not even sure if they are keeping any of it down).


I am thinking if she is only going to have a month between flares it is time to try something other than Pentasa for maintenance.

 

[lookame]

I was put on flagyl by a doctor in the ER after doing a CT scan and finding inflammation of my colon. He threw the prescription at me and said these won't help you. I took the pills and like your daughter I had intense vometting and even more diarreah which caused even more blood. I stopped taking it after 2 days and said I'll deal with the blood and pain it's not as bad as taking that crap.

If your concerned about it I would go ahead and forgo to pills, especially if it's only a maybe. they should be more diligent before prescribing something that makes you sicker than you already are. It's also a good idea to get a second opinion and a doctor willing to do a stool culture, maybe even take her to an urgent care.

 

[tiloah]

I would ask the doc's reasoning behind prescribing it. I have heard that Crohn's responds to treatment with antibiotics even without overt infection, so that may be what they're trying to do. But if she hasn't responded to it in the past I don't know why they would expect her to now.

I would tell you to voice your concerns but it often seems like doctors think we're being unreasonable if we don't want to subject ourselves to the torture of these drugs. Flagyl is so, so awful. So I would just recommend trying to find out WHY they want her on Flagyl and maybe ask if there are some alternatives. Like you said it sounds like she needs a different maintenance medication.

 

[DustyKat]

Hey Angie,

Matt has been on Flagyl for 5 months now and has another month of treatment to go. He takes it three times a day.

Fortunately he has had no side effects but with what Izzi is experiencing I would question the efficacy of it. Like you say, what's the point if she is vomiting it up.

The only issue Matt had was the taste and that was resolved with ensuring that he was dispensed the brand rather than a cheaper generic.

Matt was not prescribed Flagyl for infection as such, all his stool cultures were negative but rather the Prof stated that research indicates that it helps reduce harmful intestinal bacteria and suppress the intestine's immune system, which can trigger symptoms.

I agree about the maintenance medication too. A month between flares indicates to me that it isn't doing the job. Time for a thorough review, maybe by a different doctor?

Dusty. xxx

 

[izzi'smom]

Hey Angie,

Matt has been on Flagyl for 5 months now and has another month of treatment to go. He takes it three times a day.

Fortunately he has had no side effects but with what Izzi is experiencing I would question the efficacy of it. Like you say, what's the point if she is vomiting it up.

The only issue Matt had was the taste and that was resolved with ensuring that he was dispensed the brand rather than a cheaper generic.

Matt was not prescribed Flagyl for infection as such, all his stool cultures were negative but rather the Prof stated that research indicates that it helps reduce harmful intestinal bacteria and suppress the intestine's immune system, which can trigger symptoms.

I agree about the maintenance medication too. A month between flares indicates to me that it isn't doing the job. Time for a thorough review, maybe by a different doctor?

Dusty. xxx

I'm guessing Matt takes a pill? Izz got a ridiculously expensive liquid suspension that it takes the pharmacy a long time to make I'm fairly certain it was the taste that made her vomit...but I believe it is also a side effect. She sometimes vomited BEFORE taking it (anticipation?) and...it was just awful. It would take an HOUR sometimes to get it down her each time, and then she'd puke it back up. Ugh. They told me there was no other option.

I get it about the bacteria. Although I'm hoping the (also crazily expensive) probiotics are helping the good bacteria out LOL!


We made an appointment with a doc at a major childrens hospital in Boston. In order to do this I requested all of her records and found that there are errors in many of the docs notes (I swear they made up her history, saying she improved on Flagyl when I CLEARLY stated she didn't change one bit. The report also stated that she improved with hospitalization (she worsened) and her Orapred dose is wrong on every single report I've seen. Seriously?!) I then found out our insurance won't cover the doc in Boston. We are pleading with the insurance company now...wish us luck!!

 

[Crohn'sFor Life]

It took Humira, Prednisone, Entocort, Imuran, Lialda and Flagyl to stop my last flare-up.

 

[DustyKat]

Hey Angie,

Yes, Matt takes tablets. I know stacks of people complain about the taste of the tablets so I can't even begin to imagine what the suspension would be like! uke_r:

Holy cow, that is just awful! Better rid of that lot!

Oh man Angie, I hope your insurance comes to the party! Sending you mega loads of luck...

:goodluck::goodluck::goodluck:

Keep us posted!

Thinking of you, :hug:
Dusty. xxxxxxxx