Quote:
Originally Posted by horsemom8
Good morning,
I am hoping someone might be able to help me. My mom has parkinson's and has been on mirapex for over 5 years. She has had tremendous weight gain, hallucinations (kittens, angels) and some symptoms I now think have not been the parkinson's progression but the mirapex. (low blood pressure, vision issues and kidney issues) She also has had the hypersexualization issues and pelvic pain which took her to the ER about 2 weeks ago. Long story as short as I can make it, they told her to stop the mirapex over seven days but she stopped it after two and things got downright ugly very quickly. She is hallucinating and delusional almost all the time and is screaming and throwing things at my Dad. I am 10 hours away and am heading up there this week and hope to bring her back with me. I have been trying to get her to get off the mirapex for a while but my mom is stubborn and a nurse of old school--MD's can walk on water and have her best interest at heart. I am also a nurse, husband an MD and he has little good to say about his profession most days. Anyway, she's not sleeping either so they gave her some more drugs for that which really aren't working either. She is agitated or depressed when she's not almost psychotic. I am wondering if there's anything I can do to hasten the drug moving out of her system? Some natural kidney support. I actually have an infrared sauna at my house and would love her to come and do some of that and eat well but they get to make their own decisions. Anyway, wondering if anyone has any experience with this and how I might proceed. I have to say, in warning, my mom is one of the sweetest people in the world and I can't tell you how much devastation this drug has wrought and I fear for what she might not recover at this point. Thanks so much, Laurie Demitry
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Laurie,
Search this forum alone and you will find several posts about how hard it is to get off mirapex. It can be done, but might take a year or more. We have tried to get off ourselves to no avail. Several times, I might add. It seems like the longer one is on it, the harder it is to get off. Other forums, and the internet, have similar reports, I have found. I can remember reading of only three PWP who have managed to get off mirapex in all the PD research I have done over the years. Granted, there may be folks who got off who never post online, but still, three is pretty indicative of the difficulty of doing this.
It is very, very hard. One person who successfully got off had to wean down like .25 at a time for several weeks before cutting back another .25 for another several weeks. When we tried to get off, you feel great the first day or so...very clear in the head, move better, but boy oh boy, the pain kicks in after about 30 hours or so and it was unbearable. And we were going very slowly! I cannot imagine a doctor expecting someone to wean off in a week-what research supports that approach? And adding more drugs only makes things worse, my own mom (not PD) had some health issues and they were throwing all kinds of drugs at her for the anxiety and sleep issues, most of which made things worse, so I had to become a real bitc! and order them discontinued immediately so we could level off and see where we were.
One thing I have found that for some reason many in the healthcare field do not remember or even know: the senior brain is DIFFERENT. Drugs do not clear a senior's body as quickly as they do in a younger person, which means the drug builds up in the body and brain and then you have horrific side effects. They will give a senior the drug as per the dosage, say 3x a day, which for someone who is 45 might be fine. But if the patient is a senior, that may be the equivalent of 5 or 6x a day, which means way more drug is in the body/brain and then it's horrible.
The other thing: be sure YOU google the drug to see if it has any particular side effects for seniors. Even doctors do not do this and will script a drug known for special side effects for seniors, for a senior! My mom was given a drug that is known to cause internal bleeding in seniors...and guess what, she started bleeding, everyone acted so surprised until I showed them the printout stating this is a known side effect for elderly patients. It is maddening, I am not in the medical field and for me to know more about a drug being given is absurd.
If your dad doesn't have medical POA, regular POA, etc., he needs to get all of that done now. It can make the difference between getting things done the way you want (or at all) and someone else calling the shots. Also since you are ten hours away, I would look into getting him some help. Someone to help clean the house, bring groceries, anything that can help with his stress level.
Good luck and let us know how things turn out.