I have read so much "pro" and "con" related to Mirapex, and I'm just looking, here, for those of you who may have taken...are taking...Mirapex. Initially, Doreen's neurologist prescribed Sinemet solely as a diagnostic "tool". Once diagnosed, he then prescribed Mirapex, and Doreen fared extremely well symptomatically (tremor absolutely controlled) and with a general feeling of well-being...no other adverse effects w/the exception of slight ankle swelling. Unfortunately, however, at its maximum dose (4.5mg. daily), Doreen developed the "dreaded" OCD behavior which was truly a nightmare. She was immediately titrated off Mirapex and Sinemet was re-introduced. Sinemet worked quite well for a number of years (dx'd approximately 10+ years, now), but recently, she has developed the unwanted adverse side effect of the Sinemet, i.e., dyskinesia which is becoming increasingly worse. Recently, her neurologist...at my urging...agreed to prescribe Mirapex again, but at the lowest dose (.125 mg. 3x's daily) which Doreen felt had helped somewhat w/the tremor; he then increased the dosage to .25 3x's daily) starting just this week, and she has noticed an even greater improvement. (One would think that I would be the LAST one to request a return to Mirapex in that I, myself, suffered so much during the period when the OCD occurred). However, I recalled how well, symptomatically AND generally Doreen fared while taking Mirapex, and I have been willing to take full responsibility for any behavior that even "hints" at OCD. Presently, then, she is taking the Mirapex (.25 mg 3x's daily) which seems to be controlling the tremor fairly well; additionally, she is still taking the Sinemet (25/100..total, 4 tabs daily) with an eventual aim to decrease and possibly eliminate Sinemet altogether to try to eliminate/alleviate the dyskinesia. All this having been said, I'm asking a simple question, but one, I guess, without a simple answer: "Are any of you taking Mirapex with any success? Do you have a "success" story to tell me? I really think that I'm looking for validation for my request that Doreen be able to try Mirapex again...that it isn't the "most dreaded" PD medication that she could be taking. Yes...it SEEMS to be helping, but I seem to question the wisdom in taking a medication that COULD be detrimental even if it seems to be "working" well. Is there something else that we should know about Mirapex that could be detrimental in the overall "scheme of things"? I think I may be feeling guilty...responsible...for any negative that COULD evolve from my urging the return to this medication.

I realize that this was so lengthy, and I apologize for that...but, I felt that I wanted you to know the entire "story" behind my urging that Doreen be allowed to return to this medication. I guess I could just have asked the basic question: "Are any of you taking Mirapex with any success? It is really this question that I most want answered, and I would so appreciate hearing from anyone who can respond with a possible positive answer.

Thank you...
Therese

I find all the posts and information on this forum interesting but must conclude that what works well for one individual may or may not work well for another. Most of what I read on this post are negative regarding Mirapex and Neupro yet, my mother, diagnosed with PD for 17 years now, has taken Mirapex since the very beginning with no adverse side effects. Recently she added the NeuPro patch to her mix and it has improved her mobility. Without it, she wouldn't be able to get out of bed on her own. On the other hand, she has tried tritrating onto Sinemet three different times now. All three times made her extremely sick and she finally threw them in the trash can.

So go with what works best for Doreen!

I so agree that a person has to pay attention to his/her own body and realize that people's responses differ greatly and also are different at different times. Getting off Mirapex for me feels like I've been let out of jail, but if it's been working for her, she's gotta go with that, and leave Sinemet or whatever feels bad in the dust...

Buckeye and Fiona...

...and Buckeye..I agree with what you said about most posts at the forum related to Mirapex have not been too positive (that is, as best I am able to recall); thus, my search for someone who might have experienced something positive about it. Let me say that I am extremely encouraged to know that your mother has fared so well while taking Mirapex...17 years..a very positive commentary, and it also addressed a concern of mine, i.e., how long might one expect this medication to be effective (I realize that here, again, it is an individualized matter); nevertheless, just knowing that it COULD have some longevity is very hopeful, and I thank you so much for giving me that hope.

...and Fiona...thank you, too, for your response...though your experience with Mirapex was not a positive one...still, you were able to respond with a positive outlook answer, i.e., to "go with what's working for Doreen." Of course, that makes absolute sense, still, as I wrote in my post, there just seemed to be some reluctance on my part...perhaps due to the fact that I have not read too many positive things, here, and I guess I just needed at least some validation for urging that Doreen be allowed to start taking Mirapex again.

Thank you both for your responses...much appreciated...

...and, if there are any others who might be able to respond to my post, I would welcome those responses.

Thank you all...

Therese

Mirapex probably wasn't part of Lewis Carroll's world, but then again...

Mirapex has been great for me but I have had to manage it carefully - at first it worked quite well, alone; then I maxed out on the dose and the doc added Sinemet while reducing Mirapex to 1 mg 3x daily. However, on the combination, I started to eat voraciously and gained about 20-30lb....

('A loaf of bread,' the Walrus said,
'Is what we chiefly need:
Pepper and vinegar besides
Are very good indeed --
Now, if you're ready, Oysters dear,
We can begin to feed.')

Then I noticed that my credit card debt had ABSOLUTELY SOARED.

At that point my neuro took my dose down to .5 mg Mirapex and raised Sinemet to 1.5 mg - both 3 or 4 times a day. I feed great on this mix and am working on paying down the debt - which actually seemed to me like a very reasonable response to having Parkinson's - I felt there was no tomorrow and I might as well buy or eat anything I wanted to at the moment! The peril of living for today only.

I also believe that ginseng, curcumin and fish oil, etc. have really been helpful to me.

Good luck - we are so different from one another!

Sasha

Sasha...for your response to my question related to Mirapex. It seems that you also developed a spending problem while taking a higher dose of Mirapex (Doreen ultimately took the maximum dosage, i.e., 4.5 mg. 3x's daily) and she developed a horrendous spending problem. Now, with Mirapex having been re-introduced...first week, .125 mg. 3x's daily...second week, .25 mg. 3x's daily, I am watching very carefully for any hint of the "spending" habit...so far, so good...and it does seem to have helped with the tremor so that I think her neurologist will probably keep her on this lower dose for the time being. He always believes in "less is best". I also think he will probably decrease the Sinemet which, in all probability, is causing the undesireable dyskinesia. This was his ultimate aim in putting her on the "new" regimen. Now, if by decreasing the Sinemet, the tremor worsens, he just might decide to increase the Mirapex to the next dosage level, i.e., .5 mg just as you are now taking. If this happens, then it seems that you and Doreen will be on a ery similar medication regimen. I will say that her mood is greatly improved since re-starting the Mirapex...just have to hope that it doesn't improve to the point where she'll want to go out and purchase everything in sight. lol...

Thank you again, Sasha, for taking the time to respond...appreciate it a lot....

Therese

All agonists are bad for me, as sinemet can't be tolerated for some. I tried titrating up on mirapex 3 times since my PD "career" began. Mirapex was tolerable for a short while but my calves and feet swelled up and it made me feel like a zombie, but it DID help with the PD symptoms. Every now and again i get the mirapex bottle out and take a small amount for a week or so , until my legs start swelling, so i stop taking it. I don't know if i have any great advise for you except that PD is a "moving target" and it doesn't hurt to use agonists with sinemet, just go on and off as slowly as you can. Never, ever, suddenly stop any PD medicine, but keep trying different things if it looks like there are problems with your current regimen. AS far as "obsessive-compulsive" behavior goes, just try to think of getting into things that you can compulsively obsess on that won't cause any "Real" problems to yourself or others, and aren't expensive. Some of us spend the whole of our days at various sites on our computers, yakking away with others who share interests. Some of us read a lot and through interlibrary loans it's very cheap to get into almost any subject you like. I agree, keeping the pounds off is difficult for some of us, but can be managed by becoming a vegetarian. If you are a good cook try to obsess over creating the tastiest, most filling, low cal dishes possible, gardening is pretty cheap and is rewarding, but i agree, not the kind of thing most of us can do.I think at one time or another OB-COMP behavior is part and parcel to having PD, but one CAN change this relatively easily if you have a carepartner who you will LISTEN to

I'm at 1.5mg 3x and I supplement with ginseng, B viamins, alpha lipoic acid, coq10, and I try to eat as many fruits and vegetables as I can get myself to eat. I feel OK (and certainly better with supplements), I still move pretty well, if somewhat slowly, and I've actually lost a fair amount of weight in the months since my diagnosis last August... stress, I'm guessing, and no compulsive eating. However, I do believe that I am exhibiting obsessive behavior (luckily not gambling or spending or...) that is causing emotional swings that I've never experienced before. It's hard for me to say whether it's the disease, my psyche responding to the situation, or the Mirapex...

So, I guess for me it's a semi-success?

I hope you find your answer,
Grant

Ol'cs and Grant for your responses...

...ol'cs...so much good information in your response. I found your thoughts extremely in interesting related to obsessive/compulsive behavior, i. e., not a horrendously terrible thing IF you are able to channel these toward things that are NOT of really great concern...that could NOT ultimately be of tremendous harm, e.g., in Doreen's case, spending money she really didn't have! As I read your thoughts about this, I actually smiled because I could see in myself an obsessiveness about being at the internet as much as I am...actually could be considered to be addictive, I guess so that this "ties in" perfectly with what you said. I thought it interesting, too, that you take small amounts of Mirapex from time to time which "says" to me that it's possible to do this occasionally, i. e., to take it this way even if one has stopped taking it for a period of time as long as it's in very small doses. Doreen has noticed a very slight swelling since re-starting the Mirapex, but unless it becomes more than slight, and she's reaping some benefit from the Mirapex, it would seem to me that minimal swelling should not prevent her from taking it.

...and Grant...first, let me say "welcome" to you.
It seems that you are taking the maximum dosage of Mirapex, i.e., 4.5 mg. 3x's daily...exactly the dosage that prompted her neurologist to wean her off it completely...but, I have often wondered if a reduction in the dosage might have solved the OCD problem while still addressing her symptom (tremor) Actually, this is the reason that I recently urged her neurologist to prescribe Mirapex again at a lowered dose...to see if that would still help her enough with the tremor while not causing the OCD.

....and I think it was Ol'cs who mentioned listening to the carepartner...oh, how true this is...and so many times Doreen has said that she only wished she could listen to me more than she does! I think I should "get this on tape" and just play it back to her whenever she is inclined to ignore my advice!!!!!

Thank you both, again, for your responses...very helpful.

Therese

Theresa-
I've been on Mirapex for several years now. I am taking more than the typical maximum dosage, which is 4.5. I take 1mg 6 times per day, along with many other PD drugs. I started taking it to replace a much older drug, with hopes of improved response and fewer side effects.
It hasn't been a miraculous change, but I think it is doing a somewhat better job for me and, at this high dose, I have had no side effects to speak of. I'm only 51 yrs old, look (I am told) and feel much younger than my years. BUT, I have had PD symptoms for 20 years now, diagnosed 18 years ago. So I'm somewhat of an "old-timer" in PD terms.
So, bottom line, relatively speaking, compared to some of the horror stories I've read about, Mirapex has been a "success" for me.
I hope this helps. If you have any specific questions, I'd be happy to answer them for you as best I can.
Good luck,
Keith