I was recently diagnosed with gastroparesis and the Dr has prescribed reglan. I haven't started taking it yet due to reading about the side effects of it. The one that most concerns me is tardive dyskinesia. How common is it for people to get that while taking this med? I wouldn't be so hesitant on taking this if I knew that side effect wasn't permanent. I'm also wondering if there's any herbal medicine or any other alternatives that won't give you such a serious side effect? I'm seeing my doctor in a couple days, as of right now I'm just really curious about this drug! Any personal experience or advice is appreciated :)
How common is it to get tardive dyskinesia from taking reglan? Are there any alternatives to take?
Question posted by jenna808 on 21 Dec 2013
Last updated on 20 April 2018 by Tin Lizzie 73
6 Answers
Tin Lizzie 73
20 April 2018
I took it for Gastroparesis also. While on it, I felt drugged and severely drowsy, but could not sleep. It's like it counter-acted itself. Two weeks after getting off, I started having diaphragm spasms that got worse, and eventually these shock-life jerks of my entire body everytime I drifted off to sleep. My neurologist diagnosed me with Myoclonic movement disorder from the Reglan. I have been on seizure medications to keep it under control for the last 9 years. Reglan was the last resort since I couldn't get food in my body, so it's not like I had other options. Best of luck to all of you who take it, or those who live with neurological damage like me.
wskimball
25 Jan 2018
Jenna, I and my daughter have taken reglan and not had any TD issues. Any drug that affects the dopamine level is subject to have an effect on TD. Yes there are herbal answers but don't know how well they work. One I would try is an over the counter pill that has peppermint oil as a base. Peppermint is a natural digestive aid.
Walter
Julie buchanan
25 Jan 2018
I only took it once... and that was it for me. It messed me up. Can't stop moving and arching my back. Almost like a person with Parkinson's . Ativan is what they are giving me to counteract the movements. I've had a stroke and now two mini strokes. Went to the ER with horrible migraine and they gave me this. Bad stuff
Jungle Jim
23 March 2014
It works but only take it for a month. Each bottle is supposed to have a black warning on it. I took it for 10 years and ended up with tardive dyskenesia which is driving me insane. Tremors at night, hate going to sleep.
I take a magnesium tablet which stops the cramps from uncontrolled stretching and slightly relieves the symptoms.
My advice don't touch reglan
jenna808
23 March 2014
Its been a couple months since I posted this. But thanks for replying. Since then I have taken it for only a week or two and it ended up not even helping so I stopped it. I believe since I took it for only couple weeks I haven't experienced the side effect tardive dyskenesia. I'm sorry to hear that your suffering from it. Its something no one should live with. Especially taking a medication to make a symptom better but yet causes a horrible one? That just doesn't make sense.. I Know they say that its un reversible, but I hope it gets better for you
sara12345
23 March 2014
My understanding was that stopping the offending medication can lead to stopping of the tardive dyskinesia, but not always.
Kbroz
24 May 2017
I was prescribed it & was supposed to take it for an entire year. No warning from pharmacies or doctor. Took 1 pill & started having eye twitching then googled it. Stopped taking it immediately & have no TD. Would not touch the drug
sara12345
24 May 2017
Wow, what a reaction! Good that you investigated it and stopped it right away.
Kbroz
24 May 2017
The FDA website says do not use longer than 12 weeks in any circumstances, was baffled that I was prescribed for so long. Medical marijuana is the only thing that cures my GI problems unfortunately I can only use it on occasion as it's not technically a prescription, just a recommendation
koosch
21 Dec 2013
My Dr took me off reglan due to the possible side effects and started me on domperidone. I have to get it thru Canada because it is not sold in the U.S. and it is a bit of a pain to get but worth it. It has helped me greatly with my severe gastroparesis. I've been taking domperidone for almost 3yrs now and am very happy. You might want to talk to your Dr about it.
jenna808
21 Dec 2013
Is it pretty expensive since you have to get it through Canada? But if its just like reglan minus the serious side effects I will definitely make thst an option and will ask my Dr.
kaismama
21 Dec 2013
There is good reason the FDA will not approve it. Here they are; Food and Drug Administration (FDA) stresses that domperidone is not an FDA-approved drug, and that it may not be legally marketed in the US. In June 2004, FDA warned compounding pharmacies and firms that supply domperidone for use in compounding that it is illegal to compound domperidone. In addition, FDA put into place an import alert permitting FDA personnel to detain domperidone shipments of bulk ingredients and shipments of finished drug products offered for importation without an active investigational new drug application. These actions resulted from FDA's concern about the potential health risks associated with the use of domperidone in lactating women. These risks include cardiac arrhythmias, cardiac arrest, and sudden death.
Although domperidone is not FDA approved, FDA recognizes there are some patients with severe gastrointestinal motility disorders that are refractory to standard therapy who may benefit from the use of domperidone and in whom the benefits of the drug may outweigh its risks. Domperidone is available to these patients through an Expanded Access to Investigational Drugs program. Under this program, domperidone may be obtained only from certain specified suppliers and authorization must be obtained prior to the importation, interstate shipment, and administration of the drug. According to FDA, currently the only authorized supplier of the drug is Dougherty’s Pharmacy in Dallas, TX.
jenna808
21 Dec 2013
So looks like there's possibly a chance I wouldn't even be able to get it... It says that it can be available to people who have severe gastroparesis and I don't have it that severely, so they may not approve it for me. But its worth trying and see what my Dr says.
koosch
21 Dec 2013
I get mine from a place called TrueValue pharmacy and it costs me about $80 with shipping for a month supply of 300. My Dr thru U of M is the one who gave me the details on how to get it and wrote the prescription for me. I know its not FDA approved. My Dr gives me regular ekg's and blood work to make sure I'm not having any complications and so far so good. This Dr was the 4th G.I. to recommend domperidone to me and told me how to obtain it. U of M even recommended it to my sister, but that was because she couldn't Brest feed after she gave birth
jenna808
21 Dec 2013
Just curious are you taking domperidone for gastroparesis? Cuz you said you've been taking it for almost three years, I didn't think you would have to take it for that long.. But thank you! I will definitely talk to my Dr about this, and hopefully I'll be able to get it. I rather pay 80 for this medicine than get reglan for five bucks but risk getting tardive dyskinesia that's permanent... i can imagine how that can affect peoples lives..
koosch
21 Dec 2013
Yea, I'm taking the domperidone for my gastroparesis. From my understanding I'll be on it for life or till something better comes. I have it really severe tho. I was hospitalized 22 times the first year and a half I was diagnosed. If yours becomes bad, which I truly hope it never does, you might want to talk to your Dr about injecting botox into the stomach. Its the only thing that has helped me so far. The treatment was easy and has kept me out of the hospital for 18mo now. Its temporary and everyone has different outcomes but just another option to explore for you.
krishill
30 Dec 2013
I have been trying to find a doctor in VA that will prescribe this. Any suggestions? I was diagnosed in April with gastroparesis and it has become much worse since then. I was slender to start and have lost 30 lbs in 5 months despite my best efforts to follow a liquid diet and take in calories. The last week has been unbearable. My current GI doc just says, well, there's no treatment, watch your diet, and says paperwork for domperidone is too complicated. Wanted to get a second opinion and learned that since I've got a GI doc, anyone in the area I want to see for a second opinion wants to review my records to decide if they can offer more than current doc--I was told that this is a measure many MDs take now to avoid being part of a malpractice suit--- and so far, none will take me.
The most helpful advice I've been given was "go to Wake Forest" which will be very difficult--I am a full time caregiver and the cost of replacing myself to travel for a couple days is pretty steep. It's out of network too which means my cost to go there will be high too. Also, WF GI dept said there's no guarantee that they will take me on after the initial consult visit. So it's by no means a sure thing.
I was given domperidone by a friend... but cannot find dosage info that is specific enough or I'd try it on my own. At this point, I feel like my survival is at stake and am willing to take the risks. I need to care for my spouse and cannot do that if I end up hospitalized...
Nursie98
14 Sep 2017
The reason the FDA does not approve domperidone is because at high doses given intravenously it can cause heart arrhythmias. However, taken orally at lower doses, I don't think arrhythmias have been an issue. You should look into the research regarding this and decide for yourself. The risk of tardive dyskinesia is there with Reglan, even taken orally. Tardive dyskinesia frequently is permanent, it does not go away even after you stop reglan. For me, reglan seems more risky. That is a judgement you have to make :) Domperidone is legal in Canada and throughout Europe. I trust Canada's drug approval process, and I feel that they have less influence from drug manufacturers. Again, your call. As long as your doctor knows the guidelines for dom and is involved.
kaismama
21 Dec 2013
I've seen many people on it and only one or two that got td if you start with symptoms of td you need to stop the med. There isn't another med like it so you're kind of stuck. I would take it but make myself aware of the signs of early td
jenna808
21 Dec 2013
Do you know if you develop td after taking it for so long or can you possibly get it within taking it for a couple days/a week?
Related topics
reglan, tardive dyskinesia, gastroparesis, side effect, prescription, diagnosis
Further information
- Reglan uses and safety info
- Reglan prescribing info & package insert (for Health Professionals)
- Side effects of Reglan (detailed)
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