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

Wow. Sorry to hear this. It is not the first we have heard of someone having this sort of reaction to agonists. We cannot really tell you what to do obviously as few of us have MDs; however, based on extensive reading of medical case studies and our experiences, it is very dangerous to stop any PD med too quickly. They need to be tapered down very slowly and imho should require close monitoring to the point of hospitalization (think Methadone). This will never happen because it means doctors admitting that our treatment is highly addictive.

That being said, when I have come off to quickly, I go back on the drug at the lowest level that makes me feel closest to normal. I take that level for 3-4 days, then try to go down to next lower dosage. If I get withdrawal symptoms, I plateau until I lower and have no adverse reaction. It is all about being mindful of what your body is telling you. And repeat until I am off and not freaking out.

One thing that really concerns me...not sure how old your mom is, but agonists trigger hallucinations and psychotic episodes in older people, so Sinemet is the standard line of treatment in later onset PD.

Dopamine Agonists and their risk to induce psychotic episodes in Parkinson's disease: a case-control study

If you are adement on no drugs, which I can't blame you, try dopa enhancing foods and supplements like fava beans, bananas, etc. see article

http://www.livestrong.com/article/84...ine-naturally/

Also, there is a natural alternative to Sinemet (levodopa/carbidopa) called Mucuna Pruriens. It is native to India and used there for thousands of years to treat PD. Clinical studies show it superior in some ways than Sinemet. It is capsule form, so it would be very easy to test at low dosages to see if it helps.

Please let us know how it goes.

Laura

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.

I just want to piggyback on LFAC's great response. To stop drugs so abruptly after five years is asking for trouble. I had to stop Mirapex when pregnant in one week and it was hell, yet I had only been on it for a few months.

There is a serious adverse effect known as Neuroleptic Malignant Syndrome that can happen when any PD drug is stopped too abruptly. It can be life threatening so good to know the basics.

Finally, there is a very helpful forum on the National Parkinson Foundation website where you can ask for a pharmacist's advice. You may want his input on how to help your mom through this. The pharmacist there is Mark, and he knows our side of it as he has PD too.

Ask the Pharmacist

I read your post with great empathy. PD is hard on families, especially when you don't understand b/c you haven't taken the drugs yourself and you're awash in a sea of doctors, drugs, and opinions. I am sorry also that your Mom is having so much trouble.

I was diagnosed in 2001 before all the legalese about mirapex was stuffed into their commercials. I had a HORRIBLE reaction to mirapex. The hyper-sexuality, shopping (10's of thousands), the hallucinations, and a few other unpleasantries. My doctor told me many many times I was making up side effects, had read about them and projected them onto myself, or that I was flat out lying. There is a great tendency IMHO and experience of treating pwp and older people as less than people and with little compassion.

There are many more kinds of meds that ur Mom could try. Personally I have found that less is more. When you start poly-pharming people you start getting side effects, which begets more drugs and more symptoms, and side effects. This creates it’s own illness in essence. Trying things to “see” if they work is hard on a brain.

I see a lot in the forums about the bad effects of agonists and sinemet. Don't forget the biggie. Quitting many of these meds cold turkey can kill you even if you go to the ER with instructions about NMS in your hands. I found that out the hard way.

I found out I don't have PD and I know that without PD sinemet and agonists can produce Dystonia and dyskinesia in people that are perfectly healthy. I spent the last 18 months trying to get off sinemet. The worst problem is the horrible muscle cramps that result in withdrawing the drug. You must work around that with many of these drugs. The more I read about them the more I am lead to the conclusion that quitting this drug is much like quitting heroin. It affects the dopamine system much the same way that some of the heavy narcotics do.

I also keep reading some things on the forum that are not quite right according to the manufacturer's packet included IN the bottle. With all the fine print that covers toxicity and elimination time from urine and build up in the organs. Some dry reading but it essentially says we're not sure how it works. We tested it on marmots and some other animals and we're not sure how it works it just does. Remember we don't know how aspirin works. Some of these doc should be telling people these things. That's great for a lot of people, but I think a lot of irresponsible doctors are stacking other meds that greatly affect all the hormones and neurotransmitters in the body.

Sinemet or any drug does not just metabolize into dopamine. The chemical it turns into is the closest pharma can come to replacing dopamine. The reason it needs tweaking or other drugs is that this imperfection in metabolism isn't perfect so it doesn't work perfectly. These dopa floods we cause to the brain are much like heroin. Most people spend years getting off heroin and require other drugs for treatment of the horrible bone pain etc.

Someone on this site recommended a great book to me. It's called Your Drug May Be Your Problem by Peter Breggin MD and David Cohen PhD

I tried stopping sinemet a number of ways. One thing I found out the hard way is the wracking muscle cramps. I injured my hip and knee, then most recently injured my shoulder (requiring a third surgery). I went and was sent to a number of different doctors to get me off this stuff and none of them knew how. I ended up in the ER and was offered nothing more than Valium. My biggest problem is that the docs don't take the detox from this stuff to be as hard and hurtful as it is.

Do research NMS NeuroMalignant Syndrome. It can be fatal and is the reason people don't take "drug vacations" because people were dying. It is also a side effect of these types of meds. No doc told me these drugs could kill me. Please be under a GOOD doctor's care if you try to back your mom off this stuff.

I saw a psychologist that my PD doc sent me to (and was a partner) in his multi-discipline system. She saw me twice a week for 3 years and thought I did not need psychiatric drugs. This as opposed to the dr who saw me 3-4 times a year or less. I do advise caution just from my own experience that ALL of the docs I consulted wanted to start assigning me depressed, psychotic, and other words you use to describe your mom.

I think either this has either become standard practice to treat all pwp the same way with a blinding lack of independent thought as to how not to treat or make assumptions. I still keep coming back to the fact that I never did have PD yet sinemet caused me to develop worsening symptoms and I had to battle every doc and argue that I was not depressed and preferred to treat my body differently. Do they treat cancer patients this way?? No. I've been one.

As mentioned there are many foods that are rich in things that cause us to produce natural dopamine. There are people that control their symptoms very well with many diets and supplements. This works very well for some and not for others.

If it were my mom I would look for a minimalist type-treating doc and get her off some of these meds. Give her a few months to clean out....because this some of these drugs take months to stop affecting you. Theoretically sinemet should be out of your body in 3-4 hours (that's on the bottle insert too), however, we can't stop it suddenly because we leave our bodies with no dopamine or too little.

I knew I was going too fast when I lost the ability to stand from a seated position quite suddenly. I went from taking 2700-2800 mg of sinemet per day to 200 mg and that really scared me. I also had difficulty with bladder and bowel control. Slowly I got down to a low of 400 mg of sinemet and hit a wall. I re-injured my shoulder and went back up to 700 mg per day to give my shoulder some relief.

I was really upset by the setback because the suffering to get there was mighty. I finally settled on dropping a half pill (25/100 mg sinemet) a week. This worked very well until I dropped from 4.5 to 4 pills a day. I realized this was after the holidays, I had my family in town (a great treasured rarity) so I did much more than usual. That was all it took to throw me for a loop.

I have noticed that the more I rest or stay in bed the easier it is to get off this stuff without discomfort. I also started using medical marijuana about a month ago that greatly helps. I'm lucky enough to land in a place it's legal. The relaxation of muscles with a non-lethal drug led me to that decision. NOBODY every OD'd on pot in history. My alternates included baclofen (highest possible dose) and 30+ mg of Valium per day. This is still not enough to stop the cramps entirely. I am very fortunate that I don't have to go to work and can rest when I need to.

I have read that a diet high in protein (what they tell us to avoid) is actually helpful in treating the disease alternatively. A diet with organic food and no exposure to pesticides is very helpful. Even spot on flea treatments can cause PD meds to not work if the person pets the dog and ingests, through contact, ingests those pyrethrums that are harmful. Organo-phosphates are very bad so consider contact with weed and feeds, any poisons, even if they say all natural need to be researched.

I think there is merit to eating a very healthy, protein balanced, vitamin balanced, and diet. Check out this PD recovery link. http://www.parkinsonsdisease.me/

There is another post here that was very helpful by someone that had to change brands of sinemet with success. See this post and TonyaV's response to me.
http://neurotalk.psychcentral.com/sh...gma#post783523

Unfortunately stopping quick unless there is a more pressing medical issue is dangerous. Dopamine has to have a chance to change gradually. Even for someone w/o PD these are serious drugs. I notice when I get OD symptoms that it's time for me to step down again. A lot of this could be a drug side effect. Don't let them convince you she needs all of this. You know your mom. With your patient help she can get more appropriately medicated. If she is medicated and this bad, it ain't working. Go with your gut and you have my best wishes.

Scans are not as definitive as some people think. After a career as a geophysicist (looking at scans and anomalies) and speaking to many doctors and people that take and interpret the scans. Scans are comparisons of activity they can't see PD. If that person has ever been medicated their scan is suspect. How do we separate affected (by meds) from disease? PD is definitive only on autopsy.

I was told and read this year that a person having issues with an agonist is more likely to have trouble with others. That said you could try azilect (wicked $$) or requip. I had no trouble with azilect. I firmly believe that sinemet should be a drug of last resort because it’s effective life is about 5 years. So with that understanding go out and talk to the doc. Keep changes SIMPLE so you can see what helps and what does not. Resist the urge to bump up drugs. When I bumped up to give the shoulder I NEED more now.

Hang in there, get some support for yourself. This is very stressful for caretakers too. If you need any references to above please ask....hopefully now that you are there things will improve.

I was six months into taking mirapexin when it triggered a psychosis. I subsequently got lost and forgot to take the drug and as i started to come down from that state i realised what happened to me. Within a few days i came off it cold turkey. Not suggesting anyone do the same but i would rather have died than get crazier. I felt awful for a long time and it took quite some time for the full effects to wear off. The quickest aid to detox is lots of water and sleep if possible. Stay home and don't get over-stimulated. I had to re-learn lots - especially procedural knowledge, like how to tie my shoe laces, and cook, or find my way round. Eventually i recovered fully, although docs told my kids, "you'll never get your mother back".

Muireann!! oh my goodness. That sounds horrible. I agree this stuff makes me crazy. To not compare it to heavy narcotics considering what it does to certain chemicals in our brains seems remiss by the medical community.

I just discovered the sleep and water bit accidentally. You are quite right and thanks for the affirmation. I thought I was getting withdrawn but I was just felt so much better after sleeping a LOT and drinking water. I also cut out salt and got my diet back on the healthy track. The diet made a huge difference too. I don't eat much processed food or salt. That addition back to my diet played havoc with my health. I gained 60 lbs. I've lost half thank goodness.

I'm looking very hard into foods that help manufacture natural dopamine and including them in my diet.

d0gma,

What you most need nutritionally to make dopamine is high quality protein, which you are probably are avoiding if still on Sinemet. So you are somehow going to have to balance increasing protein while decreasing Sinemet. Breakfast is crucial. Either eat like Thai people [eat your left over dinner of beef/pork/chicken stirfry and egg fried rice for breakfast] or eat like the Dutch do for breakfast [lots of slices of unprocessed cheese and cold cuts of real homecooked joints of meat]. You won't know yourself.