New drug, antibiotic-type, that doc just prescribed for hubby's chronic pouchitis as he can't take Flagyl and tends to get joint issues when on Cipro long-term or high dose (he just had to go back up to 1000 mg/day of Cipro). Had been on 12 Xifaxan/day (yes 12!) and that stopped working too. So doc said to try this. It's for infectious diarrhea (like giardia) but worth a shot. Just wondering if anyone else out there has tried it?

Also if anyone has tried any other antibiotics other than Flagyl, Cipro or Xifaxin (rifaximin) with success? Hoping there is something else out there just in case.... I have seen here and there people using things like doxycycline, etc. so would love to hear any positive experiences. Thanks!

P.S. He has tried VSL but has not worked for him. He is definitely 100% antibiotic-dependent.

Muggette,

Either I'm blind or you forgot to put the name of the new anti-biotic that you are asking about.

Peggy - it's in the subject of the post - Alinia.

kathy

Oh, thanks Kathy! Dah, huh?


Muggette, no, I haven't tried it or heard of it. I imagine we'll be hearing more about it soon. I hope it's a good one and that it works for your husband.

Keep us posted.

Good point though Peggy - I should have listed it again in the text. Thanks for clarifying though Kathy.

It's not indictated for pouchitis; just another antidiarrheal antibiotic but I know the docs will try one thing after another, which I agree to actually as, working in the pharma industry myself, it does not make financial sense for a company to test out a drug for such a rare condition like pouchitis. It is only practical to do studies to get drugs labelled for conditions which will make them money to reimburse the costs of doing the trials (people have no idea how much it costs to do a clinical trial, let alone take a drug from inception to marketing, and that is the ones that make it), and pouchitis won't do that. Although here it feels like everyone has it (ha, ha) there aren't that many cases nationally or world-wide which is why there aren't any drugs FDA-approved for/labelled for 'pouchitis'. I tried explaining that to my insurance company though when they were denying Xifaxin for my hubby (they didn't realize I work in the business). They were denying it saying it was 'off-label use' because it was only approved for traveller's diarrhea and one or two other things (not pouchitis). I tried telling them that NO drugs are approved for pouchitis so ANY drug given would be off-label, and they had no problems paying for the Flagyl and cipro off-label for his pouchitis (because they are cheaper) but it was when we tried getting Xifaxin for this that they fought us, because it is so darn expensive. Oh the fight we had! We spent months and finally got it and then it stopped working for him. OK, that was getting somewhat off-topic; sorry for the rant.

Anyway, just hoping that I will hear about other possible antibiotics that have worked for people as I stated above, docs try lots of things and given there is nothing 'approved' for pouchitis we don't really know what works until we try it so there could be other things out there. I know some of it is very individual too.

I have never used it for pouchitis, but took it in the hospital for giardia when I was there last year. The docs love it for giardia because it's only 2 doses and you're done instead of the 10 days on flagyl. I didn't notice any side effects and it cleared me up right away.

I used Alinia back in March. But my case is a little different. It did not make a major difference for me though, my pouchitis had no symptoms so I couldn't really tell you what worked specificially.

Levaquin finally kicked in after a few weeks for me.


What I had was cuffitis and pouchitis. And my pouchitis was irritating my cuffitis. My ONLY symptoms were anal spasms from the cuffitis. What finally got rid of them was Levaquin. and believe me, for MONTHs I'd tried this and that antibiotic.

Also, I did not notice any side effects from the Alinia.

Yes, I tried Alinia just over a year ago. I'd been on Cipro for three years and wanted to find another drug to rotate with. It didn't work, my pouchitis got worse right away on the Alinia. I found Xifaxin helps me instead.

I'd be quite keen to try it myself. I only seem to get any real benefit from flagyl at the moment and cipro doesn't really seem to work (in fact, it may even make things worse). My speculation leads me to the conclusion that my problems could be primarily down to anaerobic bacteria as I believe flagyl is effective against anaerobic bacteria but cipro isn't very effective. From my research into Alinia it seems it is effective against anaerobic bacteria so it makes me wonder whether those people who benefit from flagyl may find it works for them.

On the other hand Jan or somebody may tell me I'm talking a lot of rot.

I'd be interested to hear from Mugette how her husband's got on with it so far.

Thanks to all who responded.

Rima - my husband also has cuffitis and uses cortisone suppositories for it. They help a lot (if he forgets for a day or two he notices a difference). Levaqin and Cipro are very similar (same class) so would make sense for pouchitis for sure. I am glad you found something to bring you relief.

Coloradoguy - Bummed to hear the Alinia didn't help you but glad you found Xifaxin helpful. My husband was up to 12 pills/day of Xifaxin and it helped some at first but then stopped.

Hi Mike: I can't remember off the top of my head which antibiotic treats which type of bacteria but you are correct in that some treat different types. My husband responded VERY well to Flagyl but unfortunately got permanent neuropathies (nerve damage in his fingertips) so can't even take again. Cipro has been the next best thing but only really helps in very high doses (e.g. 1000 mg/day) and even then doesn't put the pouchitis in remission, just reduces the BMS to about 8-10/day. So maybe this will be the one (fingers crossed!) esp. if you are correct with regards to Alinia and Flagyl treating the same type of bacteria (I'm being too lazy to look it up right now...) He hasn't started it yet as he had an antidepressent prescribed at the same time and since they can cause a variety of side effects, I thought it best he wait a week or so to start the Alinia just in case.... I never think it's a good idea to start two things at once if possible in case you get side effects then you may not know which caused it and also if you see improvement you may not know which helped (if they are treating the same thing that is). He'll probably start next week so I'll definitely pop back on here and let you/everyone know how he does....

The one thing everyone seems to say is that they haven't experienced side effects from Alinia which is nice as my husband has had major side effects from the others, so hopefully this will be an effective and SAFE/TOLERABLE option!

Just wanted to let you know that my husband finally started the Alinia and so far, so good. Not a miracle by any means, but reduced his output and symptoms some (more than what his last regimens were doing). Not on it long enough for a good evaluation and unfortunately he has been eating CRAP many days since starting (OK men, sorry for this in advance, but MEN - UGH!) So hopefully I can get him eating better and with a few more weeks on this we'll be able to tell more. Hoping it works as this has a better side effect profile than some of the others.... Fingers crossed! I'll post when we know more.

Thanks Muggette. Keep us posted once he's been on a few weeks.

Wanted to let you know that he decided to try alternating the Alinia and Cipro each week. Seems like whenever he starts a new antibiotic he does well but by about day 7 he deteriorates a bit. So switching back and forth between the two - one week on each - and will see how that goes (former doc had proposed that as an option a while ago, not specifying which antibiotics though). Unfortunately he has been back to eating tons of junk and everything that he knows bothers him - ice cream, fruit smoothies, greasy/fatty foods, etc. Makes it hard to tell what works and what doesn't. But hopefully he'll give in to my nagging (I can be very persistent) and he'll better his diet so we can see if this helps. He knows he is facing losing his j-pouch so he needs to get his act together. Easier said than done I know! Will continue to keep you all posted....

My son Andy has taken Alinia with some good results. It IS pretty expensive though. However, it only worked for him for about a year, then the results started waining. How he's back on Flagyl alternating with Cipro. I wish your husband luck.
Marge