Reglan and Tardive Dyskinesia

I know you are not my doctor and all the other disclaimers that apply.

My husband is in the hospital again, this time from extended severe bouts of hepatic encephalopathy, dehydration and not being able to keep any food down. The latter is the problem.

Since he hadn’t had much food in days and he was not suffering from any internal blockage, the doctor decided to put him on Reglan. I believe he’d had either two or three doses before he began having serious side effects, which they didn’t readily realize was due to a reaction to that drug.

What has happened is this… he has uncontrollable, involuntary mouth movements (like continuously sticking his tongue out, bouncing his jaw up and down, etc. – think the physical tics of Tourette’s), spasms in his hands where they become claw-like, an inability to respond or swallow and a spike in fever (around, I think, 101 or so).

This all began happening late yesterday evening. Slowly at first, so that I thought the mouth thing was voluntary and that he was joking with me (as he is wont to do sometimes if he’s somewhat aware during his encephalopathy episodes), until everything became rapid and apparent at once. Obviously, the doctor wasn’t at the hospital while this all was going on and his subsequent diagnosis was over the phone.

Initially, he ordered tests (a CT scan, chest X-rays and some blood cultures), but as his symptoms worsened is when he realized it was an adverse reaction to this new medication. He prescribed that we stop that treatment immediately and, since he couldn’t swallow, in IV of Benedryl.

That’s been about four or five hours ago, I guess, and although sometimes his symptoms don’t remain as severe, they are still there. Fortunately, all his vitals appear to be good and the nurse assures us (we still haven’t seen the doctor yet) that as soon as we get all of that drug out of his system, he’ll be fine and there should be no long lasting effects.

However, upon googling around, I’ve found that this apparently is one highly contested medication with rampant lawsuits. The specific symptoms he has also have a name… Tardive Dyskinesia and it can be a permanent condition after prolonged use in high quantities with no cure. For him though, he was only taking 5 mg. if that makes a difference.

So, my question to you is, has anyone had experience with this? Is there a course of action we should be perusing besides Benedryl? Has anyone heard of these symptoms happening to people long term after such a small dosage over such a short period of time? And anything else you can think to help us because I’m not thinking very clearly right now.

Please help. I’m frantic while waiting for the doctor and although we’ve been through some unbelievably scary stuff in the past 15 months, this by far has been the worst. It has been like watching someone have a prolonged seizure or, I suppose since I’ve never seen one, what I’d think a stroke looks like.

So, if you can shed any light on this I’d greatly appreciate it. As always, I thank you all in advance for your consideration in reading this and for any and all help.

Too late for the edit, but also, if you have any information but would rather share it via PM, I now have notifications turned back on. I’d somehow turned them off and I didn’t realize. Thanks again.

Saw in your other thread that things are looking scarier than ever :(.

Back to the Reglan thing: While this may be moot at this point, and I’m not a doctor or a pharmacologist, the thing with using Benadryl sounded pretty odd, and here’s why:

I have Restless Legs Syndrome. Anything that can act as a dopamine antagonist - like Reglan, is really a bad thing for us. Can make us incredibly twitchy and unable to sleep.

Benadryl and some other antihistamines are also considered triggers for RLS flareups. As in, it might make us a little drowsy (not me, it just makes me MEAN), but we’ll be so twitchy we can’t rest.

By this, I’m guessing they may have an effect on the dopamine levels. Hence, if he’s having Reglan-induced TD, something else that could potentially affect the dopamine wouldn’t be my first choice.

I could, of course, be 100% wrong, but it might be something to at least ask the doctors.

Normally Reglan won’t cause TD until you’ve been on it for high levels and/or a long time, but with your husband’s brain so wonked out by the liver issues and now the aneurism, who knows. Sorry to year about the latest developments.

Oh, and my personal experience with Reglan (won’t bore you with the details): essentially, I took one tablet, not sure what the dosage was, but it essentially made it as if I’d skipped my night-time RLS medication. The comparison I gave the doctor was “Imagine you’re taking an antacid pill. And imagine you wash it down with a big ol’ glass of lemonade”.

Sorry for forgetting about this thread. There was just so much going on, I’d have misplaced my head if it weren’t attached. Sigh.

Anyway, thanks so much for your insight. Now that all his symptoms have passed, the doctors feel there will be no lasting damage. So fortunately, I guess all my questions now are moot. Because God knows we’ll certainly never let him take that shit again. Shudder. That was one of the most awful experiences I’ve ever seen anyone go through. And intellectually, I know any drug can have any negative side effect at any time given the wrong person. But I swear that emotionally, all I wanted to do was go Mama Bear on several people and their asses. Gah!

If I’d had my way at that moment, that stuff would’ve been taken off the market so fast it’s make your head spin. Glad to know it at least helps some folks. But to think those tremors / spasms / contortions could be permanent? Oh my God!

Thanks again for your help!

Those symptoms didn’t sound like tardive dyskinesia. That usually develops only after a significant period of time on that class of drugs and often gets worse if you lower the dose or stop the med. What the symptoms did sound like was a “dystonic reaction” which is a common side effect of that class of drug. Frightening and painful muscle spasms develop and Benadryl is the drug of choice for emergency treatment of those spasms. People who must take that type of medication continuously usually take Cogentin (less sedating than Benadryl) at the same time just to prevent dystonic reaction. My husband has a GI problem that causes bouts of nausea a couple of times a month. Reglan gives him good relief and he considers it a “godsend.” Since your husband’s liver is so impaired, he was probably unable to metabolize the drug so his blood levels of it built up enough to trigger that side effect. If he ever really needs it again, he can be given Benadryl or Cogentin with it and will not have that problem again. Anyway, best wishes to you both.

I agree with everything Little Cloud said, except that I think there might be a small possibility it is tardive dyskinesia. I agree that tardive dyskinesia is classically a more late-presenting condition and dystonic reactions present sooner; however, I have heard of tardive dyskinesia presenting earlier and those particular movements you are describing sound classically like tardive dyskinesia. Overall though my money is also on dystonic reactions, and it appears to be responding to benadryl so that sounds about right. Just so that you have more than one opinion with regards to that.

After my first stomach operation a doctor put me on reglan.

It was a horrible drug for me. He had warned me if I had any problems with movement I should get off of it right away - but I thought he meant dizziness or falling…

One Sunday, shortly after staring reglan, I just couldn’t get comfortable. I kept moving and one of the guys over for football mentioned I was “twitchy”. By Tuesday all my limbs kept moving. Arms and legs moving up and down and sideways. I coudn’t focus.

The worst part came Thursday when I thought about killing myself. I have had depression on and off since puberty, but I have never thought about killing myself. This was a totally different feeling from depression, but I cannot do it justice with words. Worse, it was on *that *day we had a 14 hour black out - so I couldn’t call my doc, couldn’t call an ambulance and was in no physical condition to drive safely. (Yes, my limb movements were *that *bad.)

Something clicked in my rational brain. I said something like: Khadaji, even during the worst times you’ve never once considered killing yourself - all these things are coming from outside.

I stopped taking reglan that day. I called the doctor the next morning when the power came on. (I was in tears because it took me nearly 45 minutes to make my limbs work well enough to dial the phone.)

He said: I *told *you if you had trouble with movement to stop taking the drug. Stop taking it now! It could become permanent.

The limb movement stopped within 10 days, but I now have hand tremors. No one can tell me for sure that the two are related and indeed, there’s enough history of tremors in the family (Dad had them - his bad in the hands, Grandma had them - hers really bad in the hands and a head bob and a chin quiver) that I am willing to believe that I might have gotten them anyway. Even if I could prove a relationship, it wouldn’t stop the tremors, so I don’t dwell on it.

None of that helps you :frowning: but know that you are in my thoughts.

I’ve tried so many different things in search of relief from nausea that I don’t remember what the problem was with me and Reglan but I do know that it’s on my ‘allergy’ list now so that I never get it again.

I did want to say, though, that Cogentin is not so hot either. I have RLS and tried out Geodon for awhile but it made me crazy with RLS symptoms. So, my doctor prescribed Cogentin to combat the additional RLS stuff. Unfortunately, after awhile my vision started to go blurry. This scared the hell out of me and I quit taking both Geodon and Cogentin right away. It was my doctor, by the way, that said that blurred vision was a side effect of Cogentin.

Reglan is a nasty medication. I know a lot of doctors now use it as a last result.

I’ve seen a couple of patients become instantly confused and extremly twitchy after Reglan given IV.

Both of these reactions were probably akathisia.

faithfool, I agree that those symptoms were probably a dystonic reaction, however the fever would also have made me concerned about Neuroleptic Malignant Syndrome. I’ve seen one case attributed to Reglan.

USCDiver, MD

Geez. Perusing my subscribed threads, I realize I didn’t update this one during all that, and I apologize to you all for forgetting again. Anyway, I just wanted to come back and reiterate my thanks for all the information and to let you know that the doctors never ventured forth with a concrete term for specifically what happened. And unfortunately, those that treated that aspect were hospitalists that I doubt we’ll ever see again to ask. But truly, you gave me hope when I was terrified (and even a little later, when I wasn’t sure if his symptoms would return or not) and I’ll always be grateful. Thanks again.