Casa Grande, AZDonna H. (name withheld) says she expected her doctor would tell her about any serious Reglan side effects, so she was surprised to learn about the link between Reglan and tardive dyskinesia.
"I first started taking Reglan before 2004," Donna says. "I was having problems with acid, gas and reflux problems, so I went to the doctor. He did an endoscope on me and found that I had Barrett's esophagus [damage to the cells in the lower end of the esophagus, possibly caused by chronic acid exposure]. The doctor treated me for that by giving me Prevacid and Reglan.
I was under the impression that the Reglan would help move the food out of my stomach faster, and I assumed the doctor would tell me about any danger. So, I took the Reglan. After I had taken it for over two years, I learned that I could have nerve problems and other problems from taking Reglan. At that point, I had involuntary shaking my hands and my arms, shaking in my legs and sometimes quivering in my face and lips.
My kids actually noticed it first. They would ask how I could read the newspaper when my hands were shaking so much. The newsprint is pretty small and I guess my hands were shaking really fast. I can be holding a coffee cup and my hand will just be shaking, or my spoon will be shaking too fast for me to eat from it.
If I hold myself tight—like, if I grip the spoon super tight—it helps stop the vibration, but if I'm relaxed, I just shake. The shaking is pretty much a constant thing. At times, I might not notice it, but generally, I'm shaking. I don't know if I shake while I'm sleeping. I can be driving down the road in my car and my hand will shake on the steering wheel. It doesn't impair my driving, but my hand does vibrate.
I also have some twitching—some movement in my mouth and vibrations in my head.
I saw the doctor again and he was going to give me a new prescription for Reglan, but I told him I wouldn't take it anymore, I would rather take an antacid. So, I stopped taking Reglan in 2006 or 2007. But, the side effects still haven't gone away. I still have shaking and involuntary movement. The doctor says that my side effects probably won't improve but, hopefully, since I've stopped taking Reglan, they won't get worse.
I take an over-the-counter antacid now and that seems to help. It doesn't make the food go through my system faster, but at least I'm not taking Reglan anymore.
As a layperson, you expect the professionals to tell you about the side effects, but sometimes they don't. The doctor ordered Reglan for me, so I took it. But, I stopped taking it a few years ago and I still have the vibrations and shaking."