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Flagyl indefinitely? Update on L.

My daughter, L, is still having mild continuing diarrhea, usually about twice a day. We are down to 2.5 mg of pred every other day, with azathioprine as a maintenance med. Her liver (AIH and PSC) has responded exceptionally well to this regimen, but her diarrhea is continuing at a low level. She has had two fourteen day courses of Flagyl. The first time it improved her stools for about a week, the second time for about three weeks. She has been tested for c diff three times, always negative. The doctor now wants to put her on Flagyl indefinitely as a maintenance med. I think I remember reading something about neurologic issues with long term Flagyl. Can anyone elaborate for me?
 

my little penguin

Moderator
Staff member
It can cause neuropathy when used long term
Is the Gi recommending the long term flagyl ???
Can you get a second opinion quickly ?
Ds did two rounds of flagyl with a few weeks break but that was the end of it due to neuropathy .
 

my little penguin

Moderator
Staff member
http://www.medscape.com/viewarticle/810905


By no means is it clear to me, at least from available data, that the story is similar for the fluoroquinolones. Whether neuropathy occurs only with long-term therapy or can occur with short-course therapy is unclear. Other antibiotics can cause neuropathy, and in my experience this typically happens with long-term administration. The drugs capable of causing neuropathy include linezolid, chloramphenicol (a drug that we don't use very much anymore), metronidazole, sulfonamides, colistin, and dapsone. Even the penicillins are capable of causing neuropathy.
 

my little penguin

Moderator
Staff member
Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.

Your peripheral nervous system sends information from your brain and spinal cord (central nervous system) to the rest of your body. Peripheral neuropathy can result from traumatic injuries, infections, metabolic problems, inherited causes and exposure to toxins. One of the most common causes is diabetes mellitus.

People with peripheral neuropathy generally describe the pain as stabbing or burning. Often, there's tingling. In many cases, symptoms improve, especially if caused by a treatable underlying condition. Medications can reduce the pain of peripheral neuropathy.

From
http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/definition/con-20019948
 
I have been wondering about a second opinion lately, but I am not sure where to go. Her liver issues make California the preferred place to go for a second opinion, but her liver is actually doing unusually well for now (and... We are in Wyoming and have three other young kids, which makes California logistically problematic) The GI issues are lingering and I don't even know where to go for a second opinion. In our region we are at the place people usually go for second opinions. Any ideas?
 

my little penguin

Moderator
Staff member
Secondary to Drugs
Neuropathy is a common side effect of certain medications, especially those used to treat HIV/AIDS and those used in chemotherapy, to fight cancer.
In some people, these medications may cause nerve damage that results in a loss of sensation or movement in part of the body. Although uncomfortable and perhaps painful, this condition is not life threatening. Peripheral neuropathy will often go away if these drugs are changed or discontinued, or if the dose is reduced. It can take several months for peripheral neuropathy to completely heal after discontinuing these drugs, but the patient may start to feel better within a few weeks. In extreme cases, however, the nerve damage may be permanent.
Some of the drugs that may cause peripheral neuropathy include:
Anti-alcohol drugs
Disulfiram
Anticonvulsants
Phenytoin (Dilantin®)
Cancer medications
Cisplatin
Vincristine
Heart or blood pressure medications
Amiodarone
Hydralazine
Perhexiline
Infection fighting drugs
Metronidazole (Flagyl®)
Nitrofurantoin
Thalidomide
INH (Isoniazid)
Skin condition treatment drugs
Dapsone
SYMPTOMS AND SIGNS
(Not all symptoms and signs may be present.)

Numbness
Loss of sensation
Tingling
Abnormal sensations
Sensations usually first occur in feet or hands
Weakness
EVALUATION AND TESTS
(Not all evaluation and tests may be necessary.)

Physical examination
Neurological evaluation
Electromyography
Nerve conduction velocity test
Blood tests
TREATMENT AND THERAPY
(Not all treatments and therapies may be indicated.)

Therapies focus on treating the symptoms, including:
Medications causing the neuropathy may be stopped or altered
Over-the-counter pain medication for mild pain.
For severe pain, take over-the-counter pain medication or prescription drugs used for peripheral neuropathy, on a regular basis—rather than waiting until nighttime when symptoms can become more severe.
Antidepressants (for pain control)
Take safety measures to compensate for loss of sensation
Ask your doctor about special therapeutic shoes (which may be covered by Medicare and other insurance).
From
https://www.foundationforpn.org/liv...y/causes/drugscausingperipheralneuropathy.cfm
 

my little penguin

Moderator
Staff member
You can do a records review at the big places
Top three
Children's of Philadelphia
Children's of Pittsburgh
Boston children

So no visit
Denver has a good children's place but not sure on ibd /liver
Seattle children's

Not sure
 
Yes, we go down to Denver. As I understand it, they are second only to children's of Philadelphia for pediatric PSC. I don't know about the IBD either, though. I guess I will look into a records review, maybe at chop.
 
Now that I say that, I know it can't be right. California (Stanford) is the PSC place. Or maybe that isn't pediatric PSC. I'd better do more research.

And maybe it is just numbers, not necessarily accumulated wisdom... Though presumably they often go together.
 
Hi there.

We had Boston do a second opinion for my son remotely. Because he has unusual presentation which is probably crohns or some very rare IBD, Drs also had biopsies and mre reread at cincinatti, who sent it on to a place in Quebec that focused on the unusual. We never had to travel for any of this.

I personally feel you would have more peace with some more experts weighing in. I'm new to this IBD world but not sure the long term flagyl thing is mainstream.

Good luck. Hope she feels better soon.
 
Hi. Yes flagyl can be used indefinitely/long-term. Our GI, who is the head of one of the top ped IBD centers in the world (sick kids in toronto) and works closely with the top docs at CHOP and Boston (Bousvarous, Baldasanno etc) uses antibiotics in the treatment of IBD and has found good success with them especially in VEO cases (not sure how old your daughter is). As with any other med, there is the risk of side effects which would need to be monitored. She also uses cipro, vancomycin and several others (or a combo depending of what works, if any). My daughter tried them all but they did not help her. If they had, she would have used them.
They are not a standard treatment in that many GIs don't use them, but the top docs do. There is evidence (you can do some research on pubmed) of their efficacy.
Since your daughter has liver issues, perhaps a consult with Dr Cox at stanford might be a good idea. There long term vancomycin has been used with very good success to treat PSC).
Hope that eases your mind (your GI isn't crazy). Good luck!
 
Thanks, killcolitis! I may be looking into a second opinion simply because it seems like a good practice, but I figured I would give the Flagyl a go while keeping a sharp eye out for neuropathy symptoms. (My daughter is six, but I can't remember if that puts her in the veo or just early onset category). We have discussed Vancomycin with her doctor and she says she will prescribe it if what we are doing (Ursodiol) isn't working, but it seems to be working beautifully for now.
 
Not sure about really long term but my son was on Flagyl for about 3 months after abscess issues. He had no side effects that we noticed.
 
How long has she been on Aza? And I'm assuming you've had her levels checked? Is she in the therapeutic range?
 
You know, I don't know if they have ever checked her levels to see if they are therapeutic. They check her liver enzymes to determine the success of aza in keeping her AIH in remission. I don't know if they are even thinking about it being therapeutic for the colitis (maybe particularly because it is still not diagnosed beyond eosinophilic colitis). That is, they said the aza should treat the ulceration in her colon as well as treat the AIH but I have had the feeling that is a secondary concern.

But now with a couple of days of Flagyl under her belt her stools are normal and she is eating a lot more, so I guess we will go with it and keep an eye out for symptoms. She has complained of headaches twice so I will be mentioning that to the nurse when I speak with her next.
 

Maya142

Moderator
Staff member
I would ask them to check her levels. My daughter was on a good dose of Azathioprine for her weight - 2.5mg/kg but when we checked her levels, they were very low. We had to increase her dose.

Wanted to add that our GI is at Chop and we were told my daughter could not be on Flagyl for more than a month. She was diagnosed at 16 so I guess VEO IBD is very different!
 
I would ask them to check her levels. My daughter was on a good dose of Azathioprine for her weight - 2.5mg/kg but when we checked her levels, they were very low. We had to increase her dose.

Wanted to add that our GI is at Chop and we were told my daughter could not be on Flagyl for more than a month. She was diagnosed at 16 so I guess VEO IBD is very different!
I agree. I have been on Aza for several years. After one blood test, within the last year, they had to cut the level in half because there was too much of it in my system.
 
Seeing as it's been six months, it might be worth asking for a levels check. I don't know anything about AIH, but I'd be curious if there are different therapeutic levels for each of the diseases.

I guess the other thing to consider is that Aza may not be her IBD drug. Im not sure how you'll be able to determine this exactly though.

Glad to hear Flagyl is having a positive impact. I hope it's the little umph she needs to get her on the right track.
 
I imagine there might be different therapeutic levels. Also, I wonder if they don't want to increase the aza because it can cause liver damage, and they don't want to ruin a good thing they have going with her liver. That's just supposition, though.
 

Maya142

Moderator
Staff member
Do they ever use drugs like Humira and Remicade for autoimmune hepatitis? I would guess they don't use Methotrexate because it's hard on the liver but maybe something like Remicade would help her?

I know nothing about AIH though!
 
I have no idea! I'm going to look into it now. I know there are some studies using Entyvio for PSC... But none of them are pediatric and I just don't know about the AIH.
 
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