UC Nerve Damage/ 17-year-old newly diagnosed

From my understanding antibiotics are pretty standard. I've done a lot of questioning regarding them, especially because all my stool tests were negative, and I was afebrile the entire time. I was started on oral antibiotics in the ER before dx of UC- they usually prescribe broad spectrum to cover any possible bug- and if it is infectious, it's not generally adventious to wait for results.
My GI also told me that Flagyl and Cipro both have some anti inflammatory properties that help the UC- I am still on Flagyl (nearly a month now).
We did opt to stop the Cipro because I was having strange pains from my elbows to my wrists and from my knees to my ankles- almost like they were being stretched really tight! One of the potential side effects is ruptured tendon, so we decided to stop due to that.
The other thing I have found is every time I experience a weird pain, feeling, twinge that doesn't seem to stop, I write it down and report to my doctor. I'm sure he thinks I'm annoying- but I don't care. I refuse to keep quiet when some of the side effects can be so severe!

I feel like there are a million possible culprits! Have they done CT, MRI or anything like that to help determine cause?
Did he have an IV in that arm that may have infiltrated?
I'm pretty sure that is also a possible side effect of the Levaquin, I got lost in the thread, but did you ask about the Levaquin causing tendon issues or loss of movement?

@kat - you can actually drop off Pred super fast from very high doses without going through the whole weeks of weening if you've only taken it a few days - like a week I believe.

Nursemb23 said...
I feel like there are a million possible culprits! Have they done CT, MRI or anything like that to help determine cause?
Did he have an IV in that arm that may have infiltrated?
I'm pretty sure that is also a possible side effect of the Levaquin, I got lost in the thread, but did you ask about the Levaquin causing tendon issues or loss of movement?

Both CTs and MRI of pretty much the kid's entire body. No tumors or muscle/tendon injuries seen. Just a dead arm. No IV infiltration.

Other posters here brought up the antibiotics (Levaquin and flagyl) as possible causes of nerve damage, so now those are in the mix. Yikes!

Morphine? Wow, that's strong too

Bella'smom said...
Quote: Stealthguardian: "Sorry I missed this initially. Nerve damage can occur immediately after administration of antibiotics. The risk is increased five fold when on steroids. The literature states that damages can even occur 6-12 months after administration of cipro. There isn't enough research out there on these antibiotics and only now are researchers beginning to figure out damaging effects.

Please keep us updated. Your son is young and has a chance to recover completely.

stealth, can you please tell me where to find the info about increased risk for antibiotic nerve damage when on steroids? Thank you very much!
bella'smom

Unfortunately, it's one of the things doctors won't tell you but it's detailed very clearly in the medical literature. If you google fluoroquinolone and corticosteroids, you'll find the answers you are looking for. The risk of damage is nearly always increased when on steroids. Here's a good source of it, but they specify the high risk for elderly patients. Note that it's related to tendon rupture, but this also extends to nerve issues:

www.ncbi.nlm.nih.gov/pmc/articles/PMC2921747/

"In the same study, compared to age-matched controls, patients taking FQs with concurrent exposure to corticosteroids were found to experience a compounding effect on the risk of tendon rupture, specifically a 46-fold greater predisposition"

It's pretty well known that FQ antibiotics are not supposed to be combined with corticosteroids unless there are good reasons for it. Doctors still do it, just because they are uninformed, and people end up paying the price with permanent issues.

Doctors generally lull their patients into a false sense of security when using these medications, telling them these side effects are rare and that they only occur in the elderly. There are some issues when they tell you this:

1) The FDA estimates that only 1-5% of adverse reactions are reported, so as many as 95% of these adverse reactions are not reported. This is because the FDA has a broken adverse event system called MedWatch. It also puts the doctor in the awkward position of reporting it. Most doctors, by virtue of their egos and god complexes, do not ever want to admit wrongdoing. There's absolutely no way a doctor would ever file a medwatch report. They slave through medical school, and when they get the MD title given, they feel entitled and justified in doing what they think is right, even if the medical literature contradicts it.

Update:

Met with Medical Director of hospital yesterday. about what I expected.

My questions:

Why was he treated w/ Levaquil and Flagyl with no evidence of infection & without telling us?

Why wasn't any type of DVT/PE prophylaxis given?

Why no info given about Remicade (potential side effects) before he received it?

Why wasn't the peripheral neuropathy included in his discharge papers?

They're "looking into it..."

StealthGuardian said...
It's dubious that they put him on remicade so soon. There's usually a treatment ladder that UC patients follow and remicade is one of the last resort treatments before surgery. It doesn't make sense to me to do that for an initial diagnosis - especially when he responded (seemingly) to steroids. Add that to the antibiotic cocktail and you're dealing with a lot of potential damage. They really dropped the ball here.

You need to keep pressing until they come up with some answers. I hope this gets resolved and that your son doesn't have to suffer anymore.

I know, I know...really my visit w/ the Med. Director yesterday was a courtesy, AND I am interested to hear the half-baked reasons they offer to explain these errors.

AND I want them to come up with a plan for his arm to be restored - if that's even possible.

Update to Stealth Guardian:

William has been on Lialda since the Remicade was discontinued. He continues to have liquid diarrhea and severe pain. We will be seeing a new Dr on Tuesday, the head of the gastroenterology department at the University hospital here. There seems to be some question as to whether the first docs misdiagnosed him during his original hospital stay. We are expecting more informed treatment this time. Another colonoscopy is likely.

The pulmonary embolisms, and their complications, continue to cause problems and are a source of constant pain and shortness of breath. He will be on blood thinners indefinitely.

The current docs have returned to the opinion that Remicade likely caused his brachial plexus injury.

To everyone on the forum, PLEASE remember and share that if you are experiencing an acute UC episode & hospitalized, you are at increased risk of deep vein thrombosis and its deadly offshoot: pulmonary embolism. Unless you have major bleeding you should be treated with prophylactic blood thinners. If your Dr. professes ignorance of this, insist that he/she consults the current medical literature and the national standards regulating patient care. UC is bad enough without having it followed by DVT/PE that results in unbearable pain & often death.

It is truly shocking that so many physicians and hospitals do not adhere to these guidelines!

The solumedrol is open to question. The underlying reason for the DVT/PE is the change in his blood coagulation directly caused by the UC. Additional risk factors were dehydration and hospitalization (immobility). All of these made it necessary for prophylactic prevention, and inexcusable that he didn't receive any.