[Polliwog]

Hi! I'm new, and just learning how to navigate this site. I was recently diagnosed with Parkinson's. Thanks for your help. This seems like a very supportive community. I take 1 mg. of Mirapex 3 x a day. At this dose I began seeing gridlike, and varied patterns of white flashing lights, upon waking at night. My eyes are open, I'm awake. They may or may not fade as I watch them. Upon waking again they are usually back. Sometimes this goes on all night. The doctors feel it is a side effect, I agree but wonder if anyone has an experience like it? Also I have such trouble with nausea, am I right in thinking I will eventually tolerate this medication? I have been on this dose for over a month and a half.

[Jomar]

my dad just started Mirapex - so i'll be interested to see the replies also.
Are you on sinemet along with the Mirapex?

[maryfrances]

Polliwog,

I have been diagnosed a year and a half. I am only on .5 mg of Mirapex.
In my humble opinion your doc might have put you on too much Mirapex, esp. to begin with. My doc had to titrate me up slowly to .5 over a few months due to severe nausea. When I stand too quickly after working on the floor or bending over I do get dizzy and see black fading in and out. I think it is a drop in blood pressure. Talk to your doctor about titrating you up from a smaller dose. That worked for me. Good luck!!!!!!!!!

Mary Frances

[Polliwog]

Hi, Thanks Jo55. No, I'm only on Mirapex. To elaborate for you on a couple smaller reactions, I was having a very bad taste in my mouth but that has nearly gone away. On the higher dose I do fall asleep without much warning, then wake five or ten minutes later, especially while sitting at my desk. I am tired from the poor nightly sleep though. I wish your father well.

[Polliwog]

Thanks, Mary Frances—it's good to hear someone else's experience with it. My Dr. may bring the dose down. I do need to consider that. I had to cut my blood pressure medicine because it did lower it too much also. I have a tremor that the Mirapex has stopped most of the time. It does come back a couple times a day for a bit, and can be quite bad. I was worried it would be worse if I lowered the dose, but it's only a guess. I work as an artist, and though the tremor stops when I move, it can hinder me. I can walk stairs more readily, but some of my muscle rigidity hasn't improved much. How are you responding to the Mirapex, and is that all you take for the Parkinson's?
Thank you so much for your kind response. All the best to you.

(It takes me a bit to write my answers. Last year I had surgery for a brain aneurysm, and have had a couple small strokes, and problems with aphasia. This is not the cause of the Parkinson's however).

Polliwog

[maryfrances]

Hey Polliwog,

I tried .5 Azilect just recently, but found that it made tremor worse, so I quit taking it. Mirapex helps some, but not as helpful as I would like with movement. Most of my problem is rigidity in right arm/hand.

[chasmo]

mirapex is a tough drug to take. I'd consider 3X, 1 mg to be a maximum dosage, one that should be SLOWLY titrated up to.
It is not a drug for everyone. Hallucinations, sleep apneas, obsessive compulsive disorder, are the most oft mentioned side-effects. Domperidone (available in Canada) is often helpful with nausea. My hallucinations and sleep apneas ameliorated after a year. They got to be where they were liveable.
There are other agonists that you can try, some folks get good results be mixing two agonists.

YOu should insist on titrating up slowly on mirapex, (its a good idea with all PD drugs)
TAlk over your drug protocol and where your MDS is going to go with it. Be involved in your treatment. Do not be afraid to tell your doctor that his plan is not working for you.

We are all unique in our medication needs. It will take some experimentation to arrive at your protocol.

Charlie

[Polliwog]

Hi Chasmo—

Did you ever see lights like I am experiencing? I worked up to this dose over the course of two months. Perhaps that is too sudden, I'm not sure what the norm is for stepping up the dose. My doctor will lower it to .75 3 x a day—If I call. I'm just not sure what I should tolerate, I was hopeful my body would adjust to this. I'm concerned it won't stop the tremor at the lower dose, or significantly improve the muscle problems on my right side. I don't mind waiting it out, if I will tolerate it better in the long run. You had some improvement in tolerance even after a year, that encourages me.
I'm an advocate for being very involved in my treatment as well, you're right to encourage that.

If you don't mind sharing, what dose are you on now, and how do you feel on it? Is it relieving your Parkinson's symptoms?
Still I do understand each person's medication needs will vary, and there is no magic in a particular number.
Thanks for your input Charlie.

(I use Zofran as an anti-nausea—sometimes works, some days it doesn't).

Polliwog

[Polliwog]

Hi Mary Frances,

The Mirapex doesn't improve movement in my right arm and hand as much as I'd hoped. Getting up stairs is easier.

My tremor comes and goes even on the medication, but is gone most of the time now. It seems worse after physical activity, or if I've been out doing several things. It had been just my hand trembling, but I find now it shakes until my entire arm is in motion. I didn't expect such a change so soon, and on medication. I find the Mirapex makes me retain fluids, and my hand is harder to move comfortabley with that puffiness. Anyone else have that problem? Does anyone else take 3 mg. total or more a day?

Polliwog

[wendy s]

Hi Polliwog, I started on Permax, another dopamine agonist like Mirapex. I was nauseous from day one, and never did really get over it. I stuck with it because I didn't know any better and my MDS said there was no difference between the agonists and switching wouldn't help. He was wrong. After a year and a half (I'm not sure whether I'm more stubborn or stupid!), I was losing too much weight and had learned enough to insist on switching to Mirapex. My only problems with it have been very mild ankle swelling. No, I don't see any lights. I also take Sinemet.

Do Not switch to Permax - it has been implicated in heart valve damage. Requip is your other choice of agonist. The best drug for you is somewhat age dependent. It seems that most neurologists prefer to start younger people off with an agonist because prolonged use of Sinemet, the most effective drug for PD, may lead to dyskinesia or unwanted movement. If you're older, the agonists may have too many side effects like hallucinations and you're better off with Sinemet. There are other drugs that may be helpful, but I don't know much about them. Good luck!! "Start low and go slow" when it comes to a new drug.