Hi, I was wondering if anyone has experience with Levaquin for pouchitis? I was diagnosed in March by scope and started on Xifaxin, poor results. Switched to cipro, seemed to help pouch but made me very agitated, finished that course anyway then started VSL#3 -3 packets daily. Pouchitis symptoms returned two days after stopping cipro. After 25 days on VSL#3, they want to start Levaquin. (although one doc says stop the VSL the other says stay on it taking Levaquin in am and VSL in pm) Having looked up Levaquin, I have to admit I'm a bit leary. I do tend to be more suseptible to side effects that affect mood. Anyone have any thoughts for me? Thanks. LoriP

i am on that right now (for a second time) and have noticed no side effects on it.

What they will/should tell you, either the pharmacy or your doc, is to make sure you take it w/ NO metals, meaning, no iron, calcium, magnesium, et al. For 2 hours pre and post.

Lori, Levaquin is in the same family of antibiotics as Cipro, so I am not surprised that you are wary of it. However, even though it is a related antibiotic, it does not mean you will have the same side effects. But, be prepared to stop taking it right away if you find the side effects are intolerable. Have you tried Flagyl? There are other antibiotic options also. You may even need a combination to tackle the pouchitis if it is resistant.

Jan

Rima, glad to hear your doing ok on the levaquin,may I ask what sort of dose and duration of treatment?At least you didn't have any horror stories to tell, Thats good news.

Jan, I was glad to see your post, you do always seem to know so much. No they haven't tried flagyl and I'm not sure why. My primary doc and my GI confirred and came up with levaquin.Xifaxin gave me flu-like symptoms , very agitated on cipro although the pouch felt better til two days after I stopped. I was wondering, can you take too much VSL#3? after the cipro we started on 3 packets /day . I had also given questran a trial which helped a bit til the vsl kicked in. I'm sorry , this post sounds dis-jointed even to me. I'm at a loss, I don't feel good on the meds ,I don't feel good off the meds and I'm scared to death to keep trying them. I have a long history of sensitivity to meds, I don't have the prednisone issues alot of folks deal with , because they only tried that once. Full blown psychosis. The ones that affect my head are the worst. Although the azithiaprine put me in the hospital as well. I know I have to take care of the pouchitis, I would really appreciate your input. LoriP

I can't recall the first treatment go-round which was sometime earlier in the year, but now I am on 500 mg, once a day. I am sure the first round was more than once a day, maybe 1 every 12 hours. I will be taking it for another few weeks until my next appt w/ him to assess my pouchitis. I've been on it for 2 weeks now.

Obviously, people feel diff symptoms when on it if at all, but my only gripe is that I can't have any milk (calcium) products for a 4 hr duration... That means no chocolate milk for breakfast!

I asked my doc why he chose levaquin (I'd tried a bunch of diff meds beforehand) and he said it was one of the stronger ones. Though, I've never had cipro or flagyl. Are those the strongest for pouchitis?

Theoretically you cannot overdose on probiotics. That said, many people cannot tolerate the suggested dose of VSL#3 (3 packets a day). So, it is possible that you are reacting to the VSL and I would try cutting the dose down. I know of one person who could tolerate only 1/2 packet per day. The dose of 3 packets is based on what was used in the clinical studies, but it does not mean you have to take that dose.

You may want to ask about Flagyl, but it commonly has side effects too. However, there does not seem to be mental/psych effects listed. Primarily, peripheral nerve damage and seizures are the main problems to watch for.

Cipro and Flagyl are the two most commonly used antibiotics for pouchitis.

Jan

What can be side effects of VSL#3?

Thanks, Lisa

Lori

You might be better off rotating on the lower dose drugs like i do. The pouchitis is probably never really gone, but it is bearable.

At least the side effects are minimal..

Good luck!

Gas and cramps, increased frequency can be side effects of too much VSL.

Jan

Gas, cramps, increased frequency....THATS what I had after I stopped the cipro and started on vsl....Could perhaps it be I don't need another course of antibiotics? I cut the vsl to one packet and pouch pressure is much better. Do I dare just quit the antibiotic and see what happens? I took the first dose of the scary levaquin and this morning the only thing I've noticed is I'm slightly feeling "stoned". Maybe a little too happy ,not too sure how much they will appreciate this at work. (I'm a unit clerk-Jan I know you'll know what that is.)
Thoughts, anyone ? Preferably with a clear head. LoriP

Tam- which meds are the lower dose ones, and how do you rotate them? and suppose my docs don't want to do this? LoriP

My GP doesn't like it much, but she does it! I'm a bit all over the place with them, but I should be taking a different every 2 weeks, tetracycline, kefflex, erthymycin, bactrim.

So after lowering the dose of vsl to one packet /day, my gut is back to base line. The levaquin caused altering bouts of "high" alternating with sleepiness. I'm thinking it was too much vsl and not pouchitis after all. The doc held the levaquin and told me to monitor symptoms. I was on the up swing when I called him....told him I was heading to the Jersey shore, Cape May in fact...Uh, I live in Wisconsin. Weird, cipro is in the same class but made me want to die. No doubt about it, very sensitive to chemicals. Actually, today I feel better than I have in weeks.
Tam- I'm going to look up those meds and see what kind of side effects they come with...though I feel good now, I suspect with my history I haven't seen the last of antibiotics. Would be good to have a plan for the next round. My GP will try about anything that might help. My GI is by the book.
Jan- THANK-YOU for the vsl info, you just saved me a month of being "out to lunch". I just don't think I was in any condition to drive 1000 miles...
LoriP

Just wanted to let you know that I have been on Levaquin off and on for forever. I have HORRIBLE joint pain!!!

jennifer

Just my 2cents... I have had chronic Pouchitis and cuff issues for over 6 months ... I was on 750 mg of cipro (nothing after a few weeks and cant take flayg.) Dr put me on 500, 250, 500 mg of Levaquin and seems to do better then the other ones. I have no side effects however, this friday I am going to disconnect and go back to my illeo ( I never minded the illeo and felt great ) My decision is I am sick of meds again and really still going about 15 to 20 times a day (along with other meds I take to slow me down). All I am saying is i actually liked the Levaquin and never had any side effects from it... but thats just me and good luck trying to figure this out