Dear Listfriends -
Dick is in his 5th week of Mirapex. I was going to wait until the 6th week
to update everyone, but in view of continuing reports from people who are
experiencing drowsiness, or no effects, or whatever, I wanted to let all of
you know how it's working for Dick by writing this update. You'll notice I
entitled this "Mirapex Poster Child." I've decided that's what Dick is,
because of the fantastic results he has had.
I might mention that before Dick started the Mirapex he was quite depressed,
and experienced almost daily episodes of mental fogginess, and "there but not
there" fugue states. He was having more and more trouble with bradykinesia
and freezing, and a lot of trouble with balance. His posture was stooped -
head thrust forward and down. It was very difficult to talk with him because
he wasn't very responsive, and almost never made eye contact. He also had
trouble with his voice volume, especially when tired or stressed.
Pd Meds before Mirapex:
3 Sinemet CR per day.
No other agonists such as Permax or Parlodel.
Summary of Mirapex experiences:
Week 1 - .125 mg three times a day
Day 1 - worse dyskinesia and dystonia than he'd ever experienced before.
Effect
apparent within two or three hours of taking first tablet. We
concluded the effect
was exactly the same as a Sinemet "overdose."
Day 2 . We decided he should try cutting back his Sinemet. He cut his usual
dose in
half. He felt good all day.
No depression.
No mental fogginess of fugue states.
Lots of energy.
Days 3 - 7 - Same as day 2, with these additions:
Almost normal facial expressions, including smiling and
spontaneous laughter.
(We can't remember the last time he laughed spontaneously).
Bradykinesia much improved. Moving much faster and more fluidly.
At some point in here (we don't remember exactly when), he increased his
Sinemet to 2/3 of his usual dose. It was just easier because he didn't have
to deal with half doses.
Week 2 - .25 mg three times a day
Same as week one, with perhaps an increase in energy level. plus:
Posture suddenly improved. Standing, walking, and sitting up
straight!
Began making eye contact during conversation.
Week 3 - stayed at same dosage as week 2 because our insurance company hadn't
completed paperwork to pay for the drug.
Actually held up his end of conversations, offering comments and
observations,
instead of answering with the bare minimum response.
Painted a good portion of the inside of our house, including
2-story tall stairwells
and entry hall. Resembled the energizer bunny!
Week 4 - Our insurance company came through, so he went to two .25 mg three
times a day. However, the first doubled dose left him severely
dyskinetic and dystonic.
We agreed that he should probably cut back still further on his
Sinemet to get
rid of these symptoms, but he was doing so well, we hated to
tamper with success. Our neuro did say he might titrate out at
a lower dose that would
work for him. Therefore, he dropped back to .25 mg three times
a day.
He suddenly started making eye contact when speaking to people!
I cannot
explain this one!
More painting and construction!
Week 5 - .25 mg three times a day
All of the improvements remain. Dick has energy to burn, it seems, and
hasn't had any depression or fogginess all this time.
He got busy today, and suddenly began feeling awful - depressed, no energy,
foggy, etc. Then he remembered he hadn't taken his Mirapex. What an amazing
difference. I know others have commented on improved balance. That's one
thing we don't think has improved for him. In addition, his voice continues
to be erratic.
I know this drug hasn't worked this well for everyone - I wish it did. We
wonder if Dick benefitted from it so much because he has so little tolerance
for Sinemet. He can take very little of it without severe, painful, almost
crippling dystonia, and these days, some dyskinesia too. I suppose it's
possible that people who were able to tolerate fairly high doses of Sinemet
may have been getting more dopamine to the brain, so might not see the kind
of difference Dick has seen. We knew he was undermedicated, but he couldn't
live with the side effects of more Sinemet.
I hope this is helpful to some of you who are deciding whether to try Mirapex
or not.
I do think the secret is to cut back on your Sinemet intake immediately. I'd
also think combining Mirapex with another dopamine agonist might also act
like an overdose. I'd say if someone tries Mirapex and gives it up because
of dystonia or dyskinesia without reducing Sinemet, it might be worth trying
again, and reducing the Sinemet this time.
I'd be happy to answer any questions that I haven't answered in this rather
lengthy post.
Margie Swindler [log in to unmask]
