I'm wondering if anyone has had any issues with a Phd using Mirapex?

At the last Dr. visit my Phd was switched from Ropinerol to Mirapex to control the dancing legs. After 3 years the Ropinerol was making him sick to his stomach. The Dr. started him out on 0.5 mg 3 times a day. Pretty quickly I noticed his balance was worse then usual and he was angry all the time. He told me he wasn't sleeping because he couldn't get his legs to stop dancing.

A call to the Dr. and the dose was increased to 1.5 mg at bedtime in addition to the 0.5mg twice a day (2.5mg a day). It seemed to be going ok for a few days and he was even in a pretty good mood but all that went downhill on Tuesday. Anger, hallucinations, not sleeping, balance problems, talking to himself, calling people out of the phone book for no reason, just to name a few. Today its gotten to the point where my 9 year old daughter told me she is afraid of him.

I see that the side effects from Mirapex can include changes in behavior so now we've hit the snowball effect. He can't take Ropinerol because it makes him sick. Mirapex isn't working so now he's lacking sleep which makes all the hd symptoms worse and I've lost the ability to reason with him AT ALL.

Up until now they've treated his dancing legs like Restless Leg Syndrome and it worked somewhat. Now I think it's chorea but is there really a difference between chorea and RLS?

yes there is a difference between chorea and RLS. Mirapex is a dopamine agonist - that means it actually increases dopamine. In HD chorea is currently treated by reducing or blocking dopamine which is what tetrabenazine does. Also, psychotic symptoms are frequently treated with dopamine blockers. I don't understand why the doctor is treating his chorea as if it is RLS and actually trying to increase dopamine.

There is evidence to suggest that people with HD are abnormally sensitive to dopamine. Huntexil (ACR16) will likely be the new approach (assuming the final Phase III trial has the same good results as the higher dose did for the last two trials). It regulates dopamine by increasing it if there's too little or decreasing it if there's too much. I really cannot understand the doctor's therapeutic strategy of increasing dopamine and I haven't heard of any PHDs having any success on RLS treatments.

Has he tried anything like seroquel? I also have restless legs with my hd, and when i went on seroquel i had huge relief from that, it helped a ton with sleep, and it's a mood stabilizer. It also reduces dopamine, and helps with muscle function

Thanks Marsha,

I think what happened here is that he was diagnosed with RLS before he was diagnosed with hd. After we found out he had hd, no one in the chain of Dr's ever questioned the RLS meds. They would ask him if it was working and he would say yes and that was the end of it.

As a matter of fact, early on he saw a movement disorder Neuro out of University Hospitals in Cleveland. This Dr. tested his strength, coordination and motor functions by having him NOT take the RLS medication, testing, then having him take the meds and re-testing an hour later. The Dr. saw improvement and even wrote a paper about it. I've never been able to find it online though.

I remember asking the Dr if the dancing legs were chorea instead of RLS. He pointed out my husbands rigid akward hand movements as chorea but felt that the legs were indeed RLS. I didn't really see the difference but figured he was the professional so I didn't question it further. Since the dancing legs are what keeps him from sleeping they've continued this treatment.

I've suggested changing his medication from RLS medications to medication that treats the chorea. Each time I've been told "we can do that down the road when the RLS medications don't work anymore". Now I've got to question if the Dr.'s are regarding RLS and chorea as one in the same?

I guess we have some issues to discuss at the next Dr. appointment. I will be curious to hear the answer!

Barb,
Yes he takes 400mg of Seroquel, 600 mg of Lithium and 60 mg Cymbalta.

When he started throwing up the RLS meds he stopped taking them and was still taking the Seroquel.
It didn't help his RLS at all. I have to say he has one of the most severe cases I've ever seen. His legs move but then he starts thrashing all about and wakes himself up. It got so severe I had to move into the spare bedroom after being hit in the face nightly.
He also talks, yells, laughs and gasps very loudly in his sleep. Its quite disturbing.
It also effects his walking and balance when he's awake. He'll kick his legs out without warning and he's pretty unstable.

Oh gosh indigo, and he is taking mood stabilizers too. I would get him off the new med right away though. Another idea, might be for them to add risperidol to what he's also taking, it works similar to seroquel, and maybe increase the seroquel too. I know when i had the rls it was so bad, and the agony, pain and lack of sleep is pretty unbearable, and when i did sleep, yes, very disturbed sleep. Gosh hang in there

You should ask the doctor how much experience (IE how many patients) he has had with HD. If you don't get a good answer, like the one I got ( I've studied it in college) or ( None) then ask him to refer you two to a more qualified Neurologist.

And you need to interview that new doctor too. You have a choice in doctors. Never think because they have a PHD that they are actually qualified to deal with this. You need one that's experienced. Doctors start in the phone book at "A" and in end in "Z". Get one you have some faith in.

Never ever assume that the doctors know what the hell they are doing. Ask them the same questions you would ask a house contractor. These people are not gods, they are people. Find the right person.

indigo9585,

your husband's "thrashing and legs, arms, hollering out" in his sleep was one my husbands worst HD symptoms. The only thing that helped was Risperadol, also helped with mood outburst like a charm! He is so easy going now, it has been a lifesaver for us. I hope this helps you.

I thought I had interviewed this Neuro pretty well. Since I live in a rural area my choices are limited and not many Neuro's around here have many phd's. This one came recommended pretty well and since my phd refuses (gets car sick) to take the 4 hour round trip to the city, my hands are tied.

Anyway last night was pure hell. My phone started ringing at 3am this morning as Phd was calling people at all hours. Needless to say quite a few are rather angry. The hallucinations got much worse. All day today he was staggering through the house with a baseball bat looking for my
"boyfriend" who he was sure was hiding in the house. Kept screaming, yelling and babbling. Refused to lay down. Kept going in his room, locking the door and putting chair up against it. Throwing things, knocking things on the floor, kicking doors.....you name it. Thankfully the kids were at school.

Got ahold of the nurse who (in turn) got ahold of the Dr. Surprise surprise....stop the Mirapex! (Way ahead of ya there Doc.) They increased his Seroquel to add a 100mg (to the 400 mg XR) and 2-300 mg of trazadone to sleep. Give him the Ropinerol if he still can't sleep (and hope he doesn't throw up).

The most frustrating part is that it is obvious he needs to go into the hospital and have his meds adjusted. He refuses and there is nothing I can do about it even with a medical POA. The laws in OH are such that if he says no, then thats it. An ER Dr. COULD put him in for 24hrs but since I can't get him to the ER to begin with it doesn't matter. The police don't want to deal with it unless he hurts someone and then they still might not take him. Last time they dumped him at the ER and the ER turned around and let him go because THEY didn't want to deal with him.

So now what? The nurse told me 'hopefully the Mirapex will be out of his system in 24 hours'. Great. Somehow I don't think she'd want to live 24 hours walking on eggshells but hey, its Friday and the Dr's office closes early.

It's been more then 24 hours since the last time he took Mirapex and the nasty screaming continues.
He did finally pass out about 4 am this morning after 2 nights of no sleep. He slept until 2 pm. I was afraid to go to sleep but did manage
to close my eyes for an hour or two. My second night with very little sleep.

His balance is so bad he can barely walk. He's still halucinating. I've begged him to go to the ER and he wont go no matter what.
I could call a squad but if he says he's not going to the ER they won't force him.

This is so frustrating and I'm so tired.

I'm glad you are keeping us updated. I was hoping he'd be better today. Both of you must be exhausted!

Third night, this time no sleep, at least for me. He finally passed out about 6:30 this morning.

The Dr. prescribed Trazodone for sleep. 100mg 2 or 3 at bedtime. Well he wont take more then 1 of these. It's like he's fighting it. He's up and down, wanders through the house turning on lights, opening doors and windows, yelling outside at no one. He'll burst through the door of my bedroom (scaring me to death) turn on the lights, babble and shake his cane at me then wander back to his room and lock the door.
He sits for 5 minutes or less then starts the whole process again.

His balance seemed slightly better last night but not much. He won't eat anything except a protein bar. He argues with me about taking the medication and he may even be spitting some of it out, its hard to say.

Have called the Dr. on call for his neuro and he is not comfortable changing his meds. Either get him to ER or wait till Monday. He wont go to the ER no matter what.

Its obvious he needs all of his medications re-evaluated. I am going to push hard to have them stop treating the legs as RLS and try a medication for Chorea. We certianly can't go on like this.

Risperidone worked wonders for my husband. I hope you can find some peace soon. What a difficult time.

Take care,
Patty

Update:

I was so tired last night that after hubby went to bed (or I thought he had) I went to bed, locking my bedroom door behind me. I got about 5 hours of sleep and woke at 5:30 this morning to find all the lights in the house on, windows and doors open and the place looked like it had been ransacked. Found hubby in the bedroom with a large hunting knife (not sure where it came from) slicing open the mattress to the bed.
When I asked him what he was doing he said someone was hiding inside the mattress and he was going to get them out. He told the police if he couldn't find them with the knife he had lighters to burn them out. Damn good thing I woke up when I did!

At that point I dialed 911. As the police and EMS came he kept going on and on about people on the roof and so on. He refused to go so they had to cuff him. He became combative so they had to restrain him.
In the ER he was given Halidol, Geodon, Atavan, Benedryl and I didnt catch the last drug and was STILL combative. The Dr.'s were SHOCKED! At that point the ER Dr. say "Honey you get a gold star for taking care of him so far but this time he needs more help".

He was transfered to a larger hospital with a psych/medical unit. When I left he was still sleeping off his med cocktail. What happens next will depend on him and how he is when he wakes up. I've told the therapist that I wont be able to take him home if he continues hallucinating or refusing to take his medication and she agreed. But as of now its still too early to say what will happen.

Oh my gosh! But seriously, that had to happen, you both REALLY needed help.

I am so glad that you were finally able to get your husband to the hospital. Last year about this same time I was experiencing almost the same thing with my husband. Mine was in our oldest son's room with a knife stabbing at something. Thank goodness our son was at college, or who knows what would have happened! I was absolutely terrified and I know exactly what you are going through. PLEASE, do yourself a favor and DO NOT take him back home! My husband was also given meds that should have knocked him out, but had no affect on him. The hallucinations were the worst. While in the hospital, the nurses would call me to try and calm him down because he thought that they were trying to kidnap our son. Once he came off 90% of his meds the hallucinations disappeared. Since my husband has been in the NH we are all much happier, including him. He says he wants to come home, but he is doing so much better there, and once again I am able to sleep. You and your kids deserve to live without being afraid. Send me a PM if you would like to talk.

Update.

He's awake, angry and still hallucinating. His balance is no better and they've had to sedate him when he gets out of control. They haven't been able to do a good assesment yet. They're giving him Halidol and Atavan but it doesn't seem to help much.

The hospital handed me a list of nursing homes and said "see if any of these will take him when we get him stable enough to go".
At this point I'd say it's going to be awhile. He's so mad, especially at me for not taking him home, that I'm not going to go back for a few days. I will call and check on him and give them time to get him stable.

Just that short visit and I feel like someone just sucked the life out of me. It's draining to see him so upset and confused.

It's been a week and hubby is still in the hospital. They've gotten the anger and hallucinations calmed down. Not completely gone but at least he's calm. One thing I've noticed is that his short term memory has gotten much worse. He still has trouble sleeping. The Dr. was hoping he'd be well enough to go early this week but the cognative problems are still a big issue.

Am getting a real eye opening lesson about placement in nursing homes. First we have to find one with secure facilities willing to take him, second it has to be on hubbys Medicare PPO list, third they have to contract with VA if we want any VA benefits. After that we can deal with any Medicaid benefits he might be entitled too.

The hospital has assured me that he cannot be released until he has a bed somewhere. He wants to come home but there is no doubt in my mind that he isn't ready. He'd end up right back in the hospital within days. It breaks my heart to see him like this but at least I know he's safe.

Indigo, i know that even though this must be very difficult for you, i'm so glad to hear that you have the co-operation of the hospital, and that they won't be sending him home. That is huge in the hd world, cus you know how many times we read on here the horror stories of hospitals trying to send someone home. Thanks so much for the update, and hang in there