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Topic How many Mirapex in a day? And how often to increase? Go to previous topic Go to next topic Go to higher level

By Lacy On 2010.11.25 22:56
My husband seems to be doing fairly well with Mirapex increases. He's up to 4 pills 3 times a day....12 pills a day. Is this excessive, normal, or will there be more increases?

Is it true that if he has a lot of this now that later when he needs something there won't be anything to help him? Am I understanding this right?

I don't know much at all about PD meds other than what his neuro has been prescribing. He's on Carbidopa/Levodopa (2 strengths) also. I'm not real clear on the difference between Mirapex and C/L but he seems to be doing rather well with this combination. He will see his neuro again on Tuesday and at that time he'll probably ask me if I want to increase the Mirapex.

My thoughts: If he's doing this well on 12 pills, how much better will he do on an increase? At what point does Mirapex not work so well anymore?

If I sound confused, it's because I am!! LOL

And yes, I guess I should be asking his doctor these questions huh? :)

Lacy

By LOHENGR1N On 2010.11.26 00:23
Lacy, When I mention in posts the holding off on some medicine it's a call for the Neurologist to make, many will hold off some Medicines but things that they consider along with the Disease are, age( I was 33 when diagnosed so in young onset they will tend to hold off as long as possible), effects on dally living, the speed of progression etc. But as we say everyone's different and gets a bit different package of symptoms. I'm sorry I didn't mean to scare you or confuse you.

Everyone seems to react to med's a bit differently and to have different problems with Parkinson's. The Mirapex I don't have any experience with that myself, I understand it is used early in the disease. This Drug was not available when I was diagnosed, it's been around for about 12 years or so, by that time I was already about 13 years into this battle with the disease. I'm sure others here have experience with it and can give you advice on it. However if your husband is doing well at present dosage the Neurologist will probably leave the dosage alone for now I don't see why they'd want to increase it. Keep posting and yes keep asking the Doctor questions the better informed you are the better prepared You'll be and soon you'll be able to answer our questions! Take care. best of luck and hang in there.

By Reflection On 2010.11.27 10:35
Dear Lacy -
there have been many discussions of dopamine agonists (Mirapex, Requip) on this forum. Som PWP do well on them, some have Parkinson's symptoms reduced - but at the cost of compulsive behavior, including compulsive shopping, gambling, sex, hoarding, etc. It can be very hard to tell what symptoms are caused by the medication, which by the Parkinson's.
I believe that my husband's overuse of Requip made years of our lives far more difficult than they would have been if he had not been taking so much. He loved the stuff, got his neurologist to prescribe far too much - because extremely secretive to hide the compulsive side effects - I can not tell you the hell we went through.

One thread that discusses these issues:
http://www.myparkinsons.org/cgi-bin/forum/topic_show.pl?id=2340#13845

I'm clipping a reference I made in that thread to a Mayo Clinic study of compulsive behaviors on dopamine agonists:

You might want to read, and perhaps print out, this recent study from the Mayo Clinic, that says that roughly 20%, and perhaps more, of those on more that 6 mg of requip or more developed compulsive behaviors. The guy on the highest dose, 24 mg/day, developed "Pathologic gambling, pathologic hypersexuality, increased food and alcohol consumption,compulsive hobby work"

Frequency of New-Onset Pathologic Compulsive Gambling or Hypersexuality After Drug Treatment of Idiopathic Parkinson Disease

http://www.mayoclinicproceedings.com/content/84/4/310.abstract?ijkey=f9f806f40b7ebec7c1063d6b9868d9ac463db19b&keytype2=tf_ipsecsha

I'd say I don't mean to scare you - but actually, I do. Maybe your loved one won't experience these side effects, but if he does, it can do a lot of damage - and PWP can become secretive, hiding their compulsions, which causes another whole set of problems. I don't think neurologists take these side effects nearly seriously enough - they tend to be focused on control of motor symptoms. Good luck.

By Lacy On 2010.11.27 12:13
That was extremely informative!! I do so appreciate the responses to my post! Right now I see no negative behavioral symptoms such as you suggest but knowing they could develop is extremely valuable information.

Right now it seems the Mirapex is doing exactly what his neurologist is hoping it will do. However, that being said, he PCP just found out his kidney function is slightly compromised and it may be due to the increases of Mirapex so we're cutting back a little to see if there's a difference in his next blood draw in two weeks.

So for right now, I'm pretty happy with how things are going for him and sure hope the Mirapex isn't the culprit with the kidneys!!

By oshroshr On 2010.11.27 22:35
Lohhegrin,
My husband is on 3 Mirapex a day plus gabapentin. He had a bad reaction to Sinemet early on 5 yrs ago cause he was given the max dose rather than gradual.
Now he has only been on Mirapex about 9 months. I am reading the posts and am starting to wonder if it is ok. He is so much happier and more able to do things this last 6 months but do you know if it will last?

By LOHENGR1N On 2010.11.28 01:57
oshroshr, I'm glad to hear the medicine is working well for your husband. Hopefully it will last for a long time. As long as it lasts enjoy the time as much as possible. Remember barring any new breakthroughs or cure Parkinson's is a progressive disease so while the drugs are working now the underlying disease continues to plod along. This is why you read about tweaking the medicines, upping doses and introducing other med's to make up for the continued loss of the dopamine producing cells. Medicine to replace the dopamine or to block nerve receptors. It's a constant slow juggling act to try to balance levels. Again if He's happier and able to do things right now try to live in the moment and enjoy this time there aren't many breaks in this bizarre game of hop-scotch we find ourselves in. Hopefully your husband will stabilize for awhile now and not need tweaking or new medicine for some time. As to how long it will last no one can say, the disease is progressive. Take care, best of luck and hang in there.

By karolinakitty On 2010.11.29 13:30
Lacy and oshroshr .... I read the Mayo clinic studies and i hope you weren't scared from the report of the guy who ended up with the 24mg. That is an awfully high dosage, in fact it is the max available. When his small compulsions started they started at 15mg. After several years of being on it. A drug that has side effects of compulsive behaviors, will continue to mount those issues if that medication is continually upped in dosage. That guy had compulsive everything..... he had the max of max when it came to compulsions. Leaf blowing, lawn care, even his hobby got involved.
I think it is our duty as caregivers, while we are monitoring our LO, we take into consideration what an obsessive behavior is and not fall into the category of making everything they do a compulsion.
If we take a dictionary approach to obsessive compulsion: an irrational motive for performing trivial or repetitive actions, even against your will; "her compulsion to wash her hands repeatedly"
Then we run into the troubles of even watching their tremors and saying they are compulsive. My guy loved and loves his shop, he was always active. He loved and loves to fish. He, if you'll excuse me, loved and still loves, lovemaking.
Now most folks would say sitting in a boat for 16 hours while trying to catch some monster catfish is obsessive, but it isn't. The "normal" catfishermen does this. We sit and wait and wait and wait to catch the big one. He works in his shop, hours upon hours, BUT, it takes him hours upon hours because his mind does not work as it used to. If you saw our spare room and boat house filled with fishing equipment both old and new, you might think we are both obsessive shoppers and fishermen. That is your opinion and we don't see it that way.
Only you and your LO know how far to push the limit on obsessions. One thing my guy says is that if it isn't hurting you or anyone around you than it is ok. AND, by hurting i don't mean your ego or your selfishness. I like to put myself in his shoes in that area. If my mind and body was failing, I couldn't work the 60-80 hours a week i was used to: What would i do?
Sorry i went on but, the best thing to do is watch, talk and go from there......

By Lacy On 2010.11.29 21:02
Sometimes I'm just overwhelmed by all this disease can do to a person, not only the patient but the caretaker, families, and friends.

I often wonder how I'm going to cope with it when things start to go downhill. I'm so encouraged by how well he's doing right now that it scares me silly to think of the bad days that are ahead someday. I find myself wondering if this is the last Christmas, tomorrow will he remember what he did today, what about pain and how will I deal with it? I thought incontinence was bad enough. Now it's nothing compared to what may lie ahead for him. I don't know what I'd do if I couldn't come here and read how everyone else manages.

By mylove On 2010.11.29 23:01
Lacy, that's why I take so much encouragement not just from the people who are here in the thick of the bad stuff, helping illuminate what might be on our road ahead, but from Al and Karolinakitty, who are always reminding me not to let my head get so stuck into anticipating the bad that I forget to enjoy the time that's here. Keep being encouraged by the good times. Keep yourself up on how to weather the bad times at the same time. And remember what Al says: it's a 'designer disease' - everybody has a custom version.

My counselor told me a few days ago that I needed to change my "F" words. I told him I didn't speak French. ;) He said No, I needed to change my FEAR to FAITH. That's the only way we can cope. To realize that worry never changes anything, no matter how hard we work at it! I'm a champion worrier, myself. I can do it till I make myself sick(er). But he's right. I do need to take that page from Al and KK's book and just roll with the things that come as best we can, and try to enjoy the journey along the way. That has helped me realize that we can choose our own perspectives.

Hang in there, and take heart. Having friends who understand your challenges is half the battle, and the other half is believing you can get through, no matter what.

By Reflection On 2010.12.01 11:20
Lacy, you initally wrote "If he's doing this well on 12 pills, how much better will he do on an increase?"
That's the key question, I believe-and the answer is, he'll probably do worse on more. The right amount of medication replaces the effects of the dopamine that's been depleted by PD, and helps PD symptoms. Too much - and the side effects are way worse. See, eg, http://neurotalk.psychcentral.com/thread139616.html
for a discussion among People with Parkinson's on the downside of dopamine agonists. Dosage is key - you may get the good stuff without the bad stuff. Being aware of the downside is also key - so if those obsessive/combative/manic symptoms emerge, you can cut down on the dose. Your involvement is critical - the Person with Parkinson's often feels GREAT on high doses of agonists, and so is reluctant to lower the dose, and is often unaware of the impact of the side effects.


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