New Diagnosis - Caused by Anti-Nausea Meds

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creampuff91344
creampuff91344 Member Posts: 988
edited March 2014 in Breast Cancer #1
Hi all. Well, to make things short and simple, the med they prescribed for me during chemo to stop breakthrough nausea has now caused really difficult problems. The drug Reglan was prescribed about halfway through my chemo, as I continued to have problems. That was in July 2008. I took it religiously, four times a day for about three months. It stopped all problems. About three weeks after starting the drug, I started having teeth problems, and mentioned this to my oncologist each time I saw him. He had no answers. Radiation followed chemo, and the day following my last rad I visited my dentist. We have done deep cleaning, replaced two crowns....and still the problems persisted. Next I started having involuntary movements of my tongue, and eye twitching. This continues today. This past week I visited a neurologist, and have been diagnosed with tardive dyskinesia....a neurological disease that is not curable. This is horrible, as I will probably battle this for the rest of my life. It is dibilitating, and can cause horrible facial distortions.

The thing that really bothers me is that doctors have had a connection between Reglan and tardive for some time, especially in older female patients. They continue to prescribe these meds, and we are the ones who suffer. After researching Reglan, I find that it is prescribed for three different reasons: gastrointestinal disorders during chemo, new mothers who are not producing enough milk, and for schizophrenia. It is an anti psychotic drug that affects the dopamine production of the brain. It affects the face, tongue, and sometimes continues to develop spasms in the extremities and back. The neurologist has told me that some people are permanently impaired, while a few have shown signs of lessening of symptoms. However, this could take years for the symptoms to dissipate (if at all). This is such a bad disease, and caused by something as common as trying to head off nausea.

My next concern is that the anti-nausea drugs given in our IV's during breast cancer treatment may be Reglan as well. The drug is given by tablet, as well as IV. Please ask your cancer treatment center what type of med you are being given prior to chemo in your IV, and be aware that Reglan is a very dangerous drug. I would sure hate not passing this along to all of you beautiful posters on this board, and have someone else afflicted by this debilitating disease. Please wish me luck as I try to find the proper way to deal with this. They have prescribed more meds....muscle relaxer and an anti-anxiety med to try to get me calmed down, but unfortunately these drugs seem to be doing more harm than good. I have discontinued this parade of meds, and will be researching natural products to see if there is something that can relieve these contractions in my face. Thank you all for listening. Hopefully I can spare someone this heartache.

Hugs to all, Judy

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  • Cindy54
    Cindy54 Member Posts: 452
    #2
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    Your Problems
    Hi Judy...my Mom developed an intestinel blockage after her ovarian surgery. Could not operate. So the doctor put her on Reglan. We both hated that little green pill..so much so that we went to taking only a half when she really, really needed it. She had the eye twitces, the lower leg miseries including cramping. It also made her very restless to the point she could not sleep. I also had looked up all the things that could go wrong while taking it, so I had an idea of what to expect. The strange thing is, when I was having my surgery for ovarian, as part of the pre-surgery prep the doctor prescribed 2 Reglan tablets to help speed up the process. I did not take them and did just fine. While this drug does have benefits, I think the side effects are too harsh to outweigh the good things. Anyone who uses this drug need to use very good caution. Hugs to you, Judy...Cindy
  • seof
    seof Member Posts: 819 Member
    #3
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    I am sorry
    I am sorry you have had this experience. Sometimes I wish Drs. would be required to take any meds they prescribe before asking patients to take them. Maybe we would have fewer drugs available with severe side effects. It is very selfless of you to warn the rest of us.

    seof
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #4
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    Oh Judy, this is not good.
    Oh Judy, this is not good. You know I had read something about that a while back only it involved the anti-nausea drug metoclopramide (maxeran). I had been given that during chemo but after a couple of doses I got the shakes and a few other se that I actually went down to the pharmacy and told the pharmacist to make a note in my file indicating a bad reaction. There seems to be quite a bit of info on the internet about Tardive Dyskinesia and there's even a website dedicated to it, but I'm sure you've already looked at these.

    Thank you for bringing this to our attention. Frequently we are not told the complete list of possible se from many of these drugs and need to find out for ourselves. I do wish you much much luck and please keep us posted as to how you're doing.

    love
    jan
  • creampuff91344
    creampuff91344 Member Posts: 988
    #5
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    phoenixrising said:

    Oh Judy, this is not good.
    Oh Judy, this is not good. You know I had read something about that a while back only it involved the anti-nausea drug metoclopramide (maxeran). I had been given that during chemo but after a couple of doses I got the shakes and a few other se that I actually went down to the pharmacy and told the pharmacist to make a note in my file indicating a bad reaction. There seems to be quite a bit of info on the internet about Tardive Dyskinesia and there's even a website dedicated to it, but I'm sure you've already looked at these.

    Thank you for bringing this to our attention. Frequently we are not told the complete list of possible se from many of these drugs and need to find out for ourselves. I do wish you much much luck and please keep us posted as to how you're doing.

    love
    jan

    Thank you all for your
    Thank you all for your thoughts and prayers. I just hope that this will be something that all of you are aware of, and can avoid this drug in the future. No matter how bad our symptoms are, it seems that doctors have a pill that can cure it. I wish I had been wise enough to research this before taking it, but like most people, when prescribed a med you have to have faith that your doctor knows what he is doing. The FDA issued a black label warning about Reglan about six weeks ago (maybe not that long), linking the drug to this disease. However, tardive has been around for many years, mainly showing up in the people taking it for their mental illness. Doctors just thought it was the schrizophenia that was producing these strange problems, and didn't think it could be the drug they prescribed to assist in their illness. I have learned my lesson. I won't take anything until I have read first. (My oncologist prescribed another drug, Cogentin, for me to take until I could get in to see a neurologist to assist in my muscle spasm in my mouth....turns out if I had not researched this before taking it, Cogentin website says, "If you have tardive dyskinesia, this druge could heighten the symptoms, and will not do anything to relieve the symptoms." Can you believe this! What an eyeopener.) Hugs to all.

    Judy
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #6
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    creampuff91344 said:

    Thank you all for your
    Thank you all for your thoughts and prayers. I just hope that this will be something that all of you are aware of, and can avoid this drug in the future. No matter how bad our symptoms are, it seems that doctors have a pill that can cure it. I wish I had been wise enough to research this before taking it, but like most people, when prescribed a med you have to have faith that your doctor knows what he is doing. The FDA issued a black label warning about Reglan about six weeks ago (maybe not that long), linking the drug to this disease. However, tardive has been around for many years, mainly showing up in the people taking it for their mental illness. Doctors just thought it was the schrizophenia that was producing these strange problems, and didn't think it could be the drug they prescribed to assist in their illness. I have learned my lesson. I won't take anything until I have read first. (My oncologist prescribed another drug, Cogentin, for me to take until I could get in to see a neurologist to assist in my muscle spasm in my mouth....turns out if I had not researched this before taking it, Cogentin website says, "If you have tardive dyskinesia, this druge could heighten the symptoms, and will not do anything to relieve the symptoms." Can you believe this! What an eyeopener.) Hugs to all.

    Judy

    tell your doctor

    I just wanted to comment that if you (any you) are concerned about taking a specific drug, tell you practitioner that you do not want to take it and why. It might be difficult to have that conversation but then they have an opportunity to substitute a different drug. If they think you are taking something and you are not, it could affect your treatment.

    When I did not have insurance, I used to negotiate lab tests with my nurse practitioner because she was ordering what would be best and needed to cover herself, I could not afford all that so we discussed it and compromised. She got used to me. ;-)

    Maureen
  • creampuff91344
    creampuff91344 Member Posts: 988
    #7
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    EveningStar2 said:

    tell your doctor

    I just wanted to comment that if you (any you) are concerned about taking a specific drug, tell you practitioner that you do not want to take it and why. It might be difficult to have that conversation but then they have an opportunity to substitute a different drug. If they think you are taking something and you are not, it could affect your treatment.

    When I did not have insurance, I used to negotiate lab tests with my nurse practitioner because she was ordering what would be best and needed to cover herself, I could not afford all that so we discussed it and compromised. She got used to me. ;-)

    Maureen

    Thank you for the words of
    Thank you for the words of advice. Sometimes I think hindsight is better than foresight, and in this case, I can't turn back the clock and do things differently. This new diagnosis is in some ways worse than the breast cancer. At least the chemo/rad have given me hope for survival, but the tardive dyskinesia is something I could have to live with from now on, no matter what they do to mask the symptoms. I have found some help information regarding natural products, such as Vitamin E and vitamin B6 being used to help relax muscles. Also, a combination of potassium and magnesium for anxiety. Will be trying this in the next few days to see if they help. Thanks for your comment. Hugs.

    Judy
  • mimivac
    mimivac Member Posts: 2,143 Member
    #8
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    creampuff91344 said:

    Thank you for the words of
    Thank you for the words of advice. Sometimes I think hindsight is better than foresight, and in this case, I can't turn back the clock and do things differently. This new diagnosis is in some ways worse than the breast cancer. At least the chemo/rad have given me hope for survival, but the tardive dyskinesia is something I could have to live with from now on, no matter what they do to mask the symptoms. I have found some help information regarding natural products, such as Vitamin E and vitamin B6 being used to help relax muscles. Also, a combination of potassium and magnesium for anxiety. Will be trying this in the next few days to see if they help. Thanks for your comment. Hugs.

    Judy

    So sorry to hear this
    Judy,

    I am very sorry to hear of this diagnosis. Your post is a warning for all of us who are on so many drugs, often taking them without really knowing anything about their side effects or potential long-term problems. It is overwhelming dealing with cancer and its treatments, and to also have to be our own doctor when it comes to drugs... Well, thanks for the warning. I applaud your effort to make yourself well and take control of your condition. We must all do that. You have probably saved a number of us from embarking on this medication blindly.

    Mimi
  • creampuff91344
    creampuff91344 Member Posts: 988
    #9
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    mimivac said:

    So sorry to hear this
    Judy,

    I am very sorry to hear of this diagnosis. Your post is a warning for all of us who are on so many drugs, often taking them without really knowing anything about their side effects or potential long-term problems. It is overwhelming dealing with cancer and its treatments, and to also have to be our own doctor when it comes to drugs... Well, thanks for the warning. I applaud your effort to make yourself well and take control of your condition. We must all do that. You have probably saved a number of us from embarking on this medication blindly.

    Mimi

    Mimi, thank you for your
    Mimi, thank you for your post. The symptoms of tardive dyskinesia in some cases take years to surface, so if you have been given this drug (Reglan), please watch yourself carefully. As stated above, some oncology centers give this by IV just prior to your chemo cocktail, and it is to prevent nausea. Ask your center what they are giving you by IV to prevent nausea, and make sure it isn't Reglan. The prevelance of tardive development is more focused on older women, but cases have developed in younger people as well. Just exercise caution.

    Good luck on Friday with your final chemo treatment. I remember when you first started posting, and how scared you were that this was a "death sentence". Now that you are almost done with the worst part of the treatment, you can see that it is doable, and something you were so brave to get through. There are a few more people that my thoughts are with for just two more treatments, Moopey and Jackie. I am wishing you all good luck in the next few weeks. Onward and upward! Hugs to all

    Judy
  • mimivac
    mimivac Member Posts: 2,143 Member
    #10
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    creampuff91344 said:

    Mimi, thank you for your
    Mimi, thank you for your post. The symptoms of tardive dyskinesia in some cases take years to surface, so if you have been given this drug (Reglan), please watch yourself carefully. As stated above, some oncology centers give this by IV just prior to your chemo cocktail, and it is to prevent nausea. Ask your center what they are giving you by IV to prevent nausea, and make sure it isn't Reglan. The prevelance of tardive development is more focused on older women, but cases have developed in younger people as well. Just exercise caution.

    Good luck on Friday with your final chemo treatment. I remember when you first started posting, and how scared you were that this was a "death sentence". Now that you are almost done with the worst part of the treatment, you can see that it is doable, and something you were so brave to get through. There are a few more people that my thoughts are with for just two more treatments, Moopey and Jackie. I am wishing you all good luck in the next few weeks. Onward and upward! Hugs to all

    Judy

    Thanks, Judy
    You are right. I was scared out of my mind when I first started posting here. My thoughts were that I was going to die -- and soon. You wonderful women were my saving grace. Onward an upward, indeed. My thoughts are with you for recovery of this neurological condition and with Moopy and Jackie as they near the finish line as well.

    Mimi
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #11
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    creampuff91344 said:

    Mimi, thank you for your
    Mimi, thank you for your post. The symptoms of tardive dyskinesia in some cases take years to surface, so if you have been given this drug (Reglan), please watch yourself carefully. As stated above, some oncology centers give this by IV just prior to your chemo cocktail, and it is to prevent nausea. Ask your center what they are giving you by IV to prevent nausea, and make sure it isn't Reglan. The prevelance of tardive development is more focused on older women, but cases have developed in younger people as well. Just exercise caution.

    Good luck on Friday with your final chemo treatment. I remember when you first started posting, and how scared you were that this was a "death sentence". Now that you are almost done with the worst part of the treatment, you can see that it is doable, and something you were so brave to get through. There are a few more people that my thoughts are with for just two more treatments, Moopey and Jackie. I am wishing you all good luck in the next few weeks. Onward and upward! Hugs to all

    Judy

    Sending you my best wishes and gratitude
    Judy, I am so sorry this has happened to you on top of the bc. You are so brave and determined that I cannot help but believe you will have the best possible outcome.

    Thank you for thinking of us and educating us about the dangers of Reglan. I was given it by IV when I was in the hospital for my mastectomy. It worked so quickly that I even asked the name and noted it, thinking I would ask for it in the future. I didn't, thank goodness. But I will ask Friday about what is used in my chemo IV to prevent nausea. I am grateful for the knowledge you've given me to protect myself. I just wish the medical community had been more responsible and told you of the risks.

    Thank you also for remembering that I and Jackie and Mimi are having chemo treatments this week. Like you, I am so proud of Mimi as she crosses the finish line with her 6th treatment Friday. She and you and our sisters here have given me courage and comfort, and helped me find optimism and strength when I needed it most. I wish that for you as you face this new challenge. You are in my prayers.
  • rjjj
    rjjj Member Posts: 1,822 Member
    #12
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    Moopy23 said:

    Sending you my best wishes and gratitude
    Judy, I am so sorry this has happened to you on top of the bc. You are so brave and determined that I cannot help but believe you will have the best possible outcome.

    Thank you for thinking of us and educating us about the dangers of Reglan. I was given it by IV when I was in the hospital for my mastectomy. It worked so quickly that I even asked the name and noted it, thinking I would ask for it in the future. I didn't, thank goodness. But I will ask Friday about what is used in my chemo IV to prevent nausea. I am grateful for the knowledge you've given me to protect myself. I just wish the medical community had been more responsible and told you of the risks.

    Thank you also for remembering that I and Jackie and Mimi are having chemo treatments this week. Like you, I am so proud of Mimi as she crosses the finish line with her 6th treatment Friday. She and you and our sisters here have given me courage and comfort, and helped me find optimism and strength when I needed it most. I wish that for you as you face this new challenge. You are in my prayers.

    Judy
    I am wishing you the best, and hope you can get this under control. I am praying for you.

    Thank you for the warning. I will be sure to check it out with my onc. tomorrow to see what i am being given, I sure appreciate the warning. and hope with all my heart that they can do something to help you. I know from all your posts what a courageous and sweet person you are. And we love you.
    jackie

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