Flagyll side effects

Hi there, Lucy has been on Flagyll almost constantly for about a year - she has had some time off it and then we went to a three week on, three week off scenario but due the latest flair up she has been on it constantly for the last 9 weeks and was due to finish at the weekend, but IBD nurse felt I should keep her on it until she speaks to the GI which is tommorow, however here is where I am freaking out - she has been complaining of her leg being fizzy yesterday and again today - quick google search tells me prolongued use can cause peripheral neuropothy. Has anybody got any experience of this ? am also really worried now as it is the only medication that seems to give her any kind of relief and if we have to stop it I imagine we will have no choice but the start remicade (which is fine too but I was hoping to hold off for as long as we could) I have called the IBD nurse and we are due to see the GI in two weeks but as usual I am worried again.
Appreciate any experience anybody has.
Thanks
Polly

Lets see. Grace was on it for 3 months. Runny stool and upset stomach was the biggest problem but remember she was starting her flare also. Interesting she said fuzzy feeling. Grace has been telling me her legs feel tired a lot. But she's not on Flagyl.

Hey Polly,

My son was on Flagyl for six months but he did not experience any side effects from it.

The other broad spectrum antibiotic used in the same manner as Flagyl is Ciprofloxacin. Flagyl is the by far the most studied of the two and is the one most commonly used. Has Cipro been suggested as an alternative to Flagyl?

I should mention here that where Flagyl has side effects, like that you have mentioned, Cipro has a side effect that can be problematic also. It can cause tendonitis and tendons to rupture.

I understand your desire to hold off as long as possible Polly...:hug:...it surely is an awful situation to be put in when you have to try and weigh up which is the lesser of two evils when it comes to the side effects of these drugs. I hope you soon have clear answers and direction and your daughter finds long and lasting relief, bless her. :heart:

Dusty. xxx

Dusty - thanks for the response - we have finished a course of ciproxin about 2 weeks ago and while it improved the symptoms somewhat it didn't fully cure them - stayed with the cyclical flagyll as up to now it seemed to be working. Completely agree about remicade being the lesser of two evils at this stage the poor little pet cant go on the way she is going. I am assuming if we start remicade we will stop everyting else i.e 6mp and flagyll? or is there an overlap period.

Farmwife - interesting grace had the funny feeling in her legs when she was taking it too. Any closer to getting her some relief? Good luck


Polly

There usually is some overlap period until the Remicade really kicks in but from our experience and a lot of others here the Remicade kicks in pretty fast so maybe you would be able to drop the 6MP quicker.

Frustrating situation I am sure! :ghug:

polly13 said:

Farmwife - interesting grace had the funny feeling in her legs when she was taking it too. Any closer to getting her some relief? Good luck


Polly

Click to expand...

:hug:
Sorry if I made it sound that way. No she has that feeling of tired legs NOW. She hasn't been on Flagyl for 9-11 or so. I think hers is that restless leg syndrome. Still has a lot of joint pains.

Grace is happy but still blood in her stool. She had a normal stool then blood in her stool again.:ymad:


But hey she's happy!

Has Polly had mer markers checked lately? Inflammation and such?

Farmwife - she had bloods done last week, markers were up but they always are, nothing new there!!!. Poor Grace, I have been following your threads it is so upsetting as a mom when you see blood in the stool and you know there is something not right. Really glad she is happy - kids are so amazing Lucy is the same it is like she has made the decision that she will work through her issues and just get on with it. She is just gone to playschool and is delighted to meet all her little friends. My little boy Luke started playschool today for a couple of session a week so the first time in 8 years I have a few hours to myself .... must get the house work done:lol:
Crohnsinct - thanks for that - you're right it is so frustrating - 3 steps forward and 2 back all the time. Crohnsinct any side effects with remicade .. its very daunting!

Polly

Sorry I called her Polly?:kiss: What was I thinking?:tongue:
So LUCY isn't in full remission then?

Hi Polly,
My daughter was also on long term Flagyl , and you are right, it is probably the Flagyl that is causing the buzzing in her legs. It did that to Gabrielle, except mostly in her arms. Her doctors have now put it on her "allergy" list because it could cause permanent nerve damage. She doesn't have any problems yet taking the Cipro to, and she was on that long term as well.

I hope Lucy gets to feeling better and either Remicade or something else does trick!

Nope! No side effects of the Remicade. They do list some doozies in the warnings but most are with regard to allergic reaction and the serious ones you would typically see during infusion and the whole staff is there to help. There is the immune suppressing thing but that is practically with all these meds so no increase there. I can tell you that our road has been pretty mild (other than giving up trips due to not being allowed to receive yellow fever vaccine and TB incidences in countries we wanted to visit). Infusion every 5 weeks and she has not gotten sick once due to low immune system. Quite the contrary she is the healthiest one in the house! THe infusions are done at a pediatric center and take about 2-3 hours. During thta time they eat, watch movies, play on the Ipad, wii etc. THe nureses dote on them and our infusion center is in our GI's office at the hospital so GI and nutritionist often pop in to say hi so it is one stop shopping. They do give the kids benedryl or some other allergy meds to help with allergic reactions so O is very tired for the rest of the day but the next day good as new.

Polly,

My son was on Flagyl and after about 6 weeks he mentioned that his arms and hands were asleep in the mornings when he woke up. I knew about neuropathy being one of the side effects so I contacted his doctor who told me to stop giving it to him immediately. Once we stopped the numbness stopped and he has no lasting side effects. It's now listed as a med he is allergic to.

Remicade has done wonders for my guy. He just started it in August so we're still trying to figure out the right dosage and interval. He experienced immediate results from his first dose!

Good luck in your decisions. It is not an easy one!

Remicade here as well for DS (8).
He started at the end of aug.
He has had 4 infusions so far .
No real side effects .
He had one incidence of cellulitis from a wart on his foot but hard to say if he still had Mtx and pred still In his system in addition to remicade .
It gave me my kid back.
He sings and dances and gets in trouble again .

Hi Polly,
My son has been on 800 mg flagyl for about 3-4 months now. He has been having periodic numbness and tingling in his fingers, I talked to the Paed Gi and he has advised me to stop for a while. From what I have read the problems should go away when you stop taking the flagyl. My son has been really well on the flagyl though so I will talk to the Dr next week at our app about what to do next for his abscesses. Hope your daughter is feeling better??

Looks like she is not alone with this side effect. We have stopped the flagyll as of monday and are starting on cipro as a substitute tomorrow - GI wanted to give her a few days before starting the cipro. No fizzy feelings since.

Seeing our GI on Tuesday week 4th December so we will have to see what that appointment brings and whether we will having the remicade conversation again. My little penguin your statement said it all - it gave you your son back, that is such a powerfull thing to be able to say and I am really happy that it has worked for him.

I'm so glad the fizzy feeling went away.
I hope the new drug works.

If you try cipro, I would suggest discussing if it's a good idea to go off and on it every time like flagyl, both flagyl and cipro are very prone to create resistance, even if you don't go off it, going on and off antibiotics makes this issue worse since pathogens mutate and each time you restart you create more and more resistance.

The resistance against Flagyl also has effects on other antibiotics (including cipro), they become far less potent because they were exposed to Flagyl in the past, I linked a study about it, not sure how easy it is to find again.

managed to find it: http://www.medsp.umontreal.ca/IRSPUM_DB/pdf/26755.pdf

Good luck on your appt.
Hope the cipro works well for her.

Glad to hear the funny feelings went away. My daughter never complaind of that when on flagyl. I hope the cipro works for her.

So glad to hear the fizzy feelings went away. Gab's did too after she was off it for a while

Sounds like you've held off as long as you could and it's time to start Remicade.

Hugs.

ANd now the poor little mite has got tonsilitis .... so more meds but hopefull we got it really early and she wont get too ill.

Hope she feels better soon

Oh goodness....
Hope it goes away quickly !

:hug:

Poor girls.
Give her hugs from my Grace!

Poor kid i hope she feels better soon...:hug:

Wishing her a speedly recovery.

Thanks everybody - she is feeling much better today and she tolerating the antibiotic for the throat very well (thank god) because I was worried she would just puke it.