A few questions
 

My wife was diagnosed with PD nearly four years ago in her mid-50's. She has been on Mirapex for three years (now at about 1.75mg per day) and Rasagiline 1 mg. for about two (starting getting it from Israel before it had US approval.) Until recently she was doing reasonably well. Now is having much more stiffness and the meds seem to be having less affect that previously. She is feeling quite down about her future prospects. (She is also taking COQ 10 for neuroprotective qualities.)

She goes to work daily and has a high level job at mid-sized company and does well at that job.

She is on the waiting list to see a new neuro who comes highly recommended, but that won't be until late August.

I have a few questions for those of you on this forum with more experience with PD:

(1) How many 'good years' can she expect from Levadopa?
(2) Is it likely that someone will benefit longer from L-dopa if you have previously been on an agonist?
(3) Does the 5 year 'honeymoon' period that people write and talk about include the time on Mirapex?
(4) Can she still get benefit from higher doses of Mirapex? I read some of the trials which seem to indicate that the benefits max out at 1.5 mg per day. Are there folks who benefit from higher doses?

These are some questions to start with. I would very much appreciate people's input on these.

Thanks,

Howard

questions
 

Hi Howard, sorry about your wife. Treat her well and she'll last a lifetime.

1)2-5 years give or take. Depends on the way one describes the "honeymoon period. Some never get it. Some last as if PD never was a big problem till a few years before stage 4.
2) No benefits from being on an agonist. Agonists do NOT do anything to stop functional loss, once the amount of brain cellls have been compromised enough for the symptoms OF PD to become evident.
3) The honeymoon period is defined as the years that one can get up out out of bed , shower, dress and go to work or do whatever as if almost "normal". They depend on how slow PD progresses in each individual (we are all different).
4) I would not try higher doses than one feels to be "adequate" in controlling PD symptoms. One is only likely to start with "dyskinesia" with higher doses.

That's all i have for you now howard. Feel free to ask whayever's on your mind. Somebody is apt to answer. WE all help each other around here to take up the plate in this respect. I assume it's not too busy around here right now because of this being a "busy" time of the year. cs

Howard ...
 

I believe the max recommended effective dosage of Mirapex is 4.5 mg per day so your wife has some way to go.

The advantage of an agonist alongside L-dopa is that it helps to reduce the amount of L-dopa needed, hence delaying the onset of L-dopa related side effects (however substituting them for the agonist's side effects, ho hum).

Remember as CS says, we are all different, all respond differently to the drugs. Our rate of progression is individual.

Don't look for a timetable as you won't find one, live each day and stay as low as possible on the meds for as long as you can.

Take care,
Neil.

Is the neurologist you are to see in late August a Movement Disorder Specialist, rather than a general practice neurologist. The the latter, I personally recommend seeing a MDS...that is always the best place for any PWP to be.

(1) How many 'good years' can she expect from Levadopa? For me the answer to this question is about dosing and what the patient is willing to "endure" on a daily basis. My first symptom was discovered by an alert Internist in 1988. I have been on levodopa since 1997, but I have taken it in a dose that helped me, rather than a dose that made my symptoms completely disappear. Hence, I have been able to get through the years until 2006 when I began having mild dyskinesia. So mild that I only have this mild dyskinesia for the first 20 to 30 minutes of each dose...every three hours at this point in time.

(2) Is it likely that someone will benefit longer from L-dopa if you have previously been on an agonist? ditto ol'cs

(3) Does the 5 year 'honeymoon' period that people write and talk about include the time on Mirapex? ditto ol'cs.

But personally, I don't know that there is such a thing as a honeymoon period. I know, I too have seen this. PD is relative...relative to the individual patient...relative to the mindset of the patient...relative to the time between first symptom and official diagnosis...relative to how much stress is in the patient's life...relative to whether the patient has dystonia, overall stiffness, dyskinesia, all of of them, none of them, one of them...so many issues color.

But to use ol'cs definition, I guess I have been in my honeymoon period since 1988. I did stop working in the work-a-day world in 2000. I can still fully care for myself from getting out of bed (pulling myself in to a sitting position using the heardboard and the wall to balance myself as I put my feet under me and stand up...I have lived alone the entire PD journey). I still drive...and no I don't scare the other drivers...yet!! To date, I haven't found anything that I can not do when I put my mind to it.

(4) Can she still get benefit from higher doses of Mirapex? I read some of the trials which seem to indicate that the benefits max out at 1.5 mg per day. Are there folks who benefit from higher doses? I think benefit is up to the patient, and how the patient, along with the doctor, feel the agonist should continue. I am currently at 1.5mg a day, along with a total of 700mg of levodopa. The longer on an agonist and as long as it is doing an adequate job, the longer before levodopa.

I could take much more levodopa, since my off time is about 50% (not 100% off, but NOT at my best...my totally at my best is about 30 min each dose), but I don't want to increase my dyskinesia. It has been my decision to avoid dyskinesia by increasing Mirapex over time, rather than increase levodopa, and live through the annoying off. Being a little off for 50% of the day is tolerable to me...a very personal choice...some would say nuts to this.

"Recommended dosage...ADULTS...The usual starting dose is 0.125 milligrams 3 times a day. If necessary, your doctor may increase the dose every 5 to 7 days until the maximum dose of 4.5 milligrams a day is reached. Dosage is usually increased gradually to minimize the drug's potential side effects. If you have kidney disease, the doctor will keep the dosage quite low."

This website shows the sliding titration scale used to increase dose:
RXList.com...Mirapex...Indications & Dosage

beware agonists
 

Howard,

At one point I was on Mirapex 3.0/day (1.0 3x/day). It made me obsessive - compulsive. Just a warning in case her doses are increased. In my case, i worked day & night on the computer. So other than me sitting at the computer day & night, there was no damage to my family.

But OC may manifest itself in gambling, shopping, etc etc -- behaviors that can deplete your savings. So if her doses are increased, watch and be aware of possible negative side effects.

I am now on mirapex .25 - 2x/day, plus azilect, and Stalevo.

OlC, Carolyn & Neil have given good advice. We're all different. And the meds may affect us differently.

Good luck to you both,
:o

See...
 

...1990anyboy, there are many caring people on this board, caring to help you and your wife with PD, no reasons except because others were here for us in the beginning of our PD "journey". This is truly "free" information from PWP.
When others feel like an answer should be added to, they are almost always correct, we are not "competitive" people; although some write here more because it is cathartic (or just because they physically and mentally "CAN"} this is a NO BS ZONE. There is some extremely good advice to be had here to help both of you "live: this disease.
It's amazing what some people include that one answer does not cover, especially warnings about what NOT to do.
My "generic answer to a first post" has usually included an admonition to get all the insurance from any source that you can, but you said that your wife had already been diagnosed, so although you should by no means rule out the possibility of finding a reasonable long care/ life (etc.) insurance provider, it gets tougher as time goes on. All for now. cs

Thanks for the input
 

I really appreciate people talking the time to post such useful and informative responses to my questions.

Howard

My Experience with Mirapex
 

I've been on Mirapex 1.0 mg 4 times a day for a couple of years; last fall they added 1.0 mg Sinemet 3 times a day (diagnosed 2004, August - symptomatic ? years before) - things were going quite well as far as movement issues, but I was beginning to develop some shopping and eating habits that certainly bordered on the impulsive if not squarely in the box yet...so they are pulling back on the Mirapex (my body is in shock!)....

What am I trying to say? My MDS seemed to think 4 mg. of Mirapex was fine, until I signed up for a study on it that revealed my OCD tendencies! It can be a great drug - but my doc said they were finding that about 15% of patients were developing these OCD side effects.

One thing that concerned me - they took no measure (self-report would have been the only kind, I guess) of my shopping and eating behaviors before Mirapex - so how do they know that there has been a change? Well, anyway, it's not recommened for those with such tendencies.

Best to you all.

Mirapex...good vs. not-so-good
 

First, let me commend you on the excellent questions that you asked. It is so evident that you want to be the best carepartner that you can be to your wife.

Some, here, have already spoken of and warned about the possibility of Obsessive/Compulsive behavior that affects some people who take Mirapex. In my case, my pwp not only became extremely O/C, but also, she became someone I hardly recognized, and I had known her for 32 years! It was a heartbreaking time for us, and we were totally unaware of the POSSIBILITY of O/C behavior until one day...quite by chance, I read a post at another forum wherein the O/C behavior was being discussed as related to Mirapex. Thankfully, I saw that post, and we immediately brought it to the attention of her neurologist who, at the time, had no knowledge of the possibility of O/C. This had just recently been "brought to light" so that even her neurologist had no idea about the O/C nature of Mirapex. He carefully titrated her off Mirapex which, in a way, was unfortunate because she had an all-round good feeling in every way while taking Mirapex...and, it definitely controlled her tremor (she is primarily symptomatic w/tremor)...actually, eliminated it. She originally started the Mirapex at the lowest possibe dosage and gradually titrated up to the recommended 4.5 mg. per day. She has never had the same good results with Sinemet so that we are now wondering..and considering asking her neurologist if he would even prescribe Mirapex again, but at a lower dosage that might not affect her as did the 4.5 mg. dosage. As I believe others have already stated...Mirapex can work very well for some individuals without the unwanted side effect of O/C.

I wish both of you the best in find a drug regimen that will give your wife the most optimal health that anyone who has PD can expect...that is exactly what my pwp and her neurologist are "working on" presently.

Virginia

Question about Mirapex
 

Does Mirapex have any antidepressant properties? I also felt great when taking it and have really crashed since they cut my dose in half....just sitting in bed crying and thinking about taking disability....it's really done me in.

Any feedback would be greatly appreciated. Thanks!

yes
 

Sasha,

Mirapex definitely has anti-depressant qualities. My neurologist has confirmed this.

best,

My Neuro also told me ...
 

that Mirapex has anti-depressant qualities.

(As I started to write this and noticed Jean had already replied, however I thought I would back her up on this one :) )

Neil.

Mirapex as an Antidepressant
 

Thank you both! Your comments that Mirapex does indeed have an antidepressant effect explains a lot of things - such as how I've been able to carry on, not only with the Parkinson's, but also with a lot of family, work, etc. problems and not just crumble! Now that I'm on a half dose, I am crumbling, but maybe I'll adjust and it will still be helpful. I remember someone saying they wrote grants while on Mirapex - it's never taken me that far, but it's made me want to write grants (which I did 30 years ago!) again.

thanks a lot. An interesting and very useful but trecherous medication.

Questions
 

1, How many good years, from my own experience, (and yes, we are all different), I had around 10 years before the dreaded dyskinesia side effects crept in. Now, after 16 years, I can hardly be "on" without having dyskinesia.
2, Is it likely that someone will benefit longer from L-dopa if you have previously been on an agonist
Same as Ol CS
3. Does the 5 year 'honeymoon' period that people write and talk about include the time on Mirapex?
I had 15 years of Pergolide before Mirapex. I define the honeymoon period as the time when if correctly medicated, only you would know you had PD. I worked for the first 5 years at a very stressful job. It was essential that I did not show PD symptoms, otherwise, I could not continue. I retired after 5 years at 60, I would say it was about 8 years before I could not hide my PD.
4. Can she still get benefit from higher doses of Mirapex? I read some of the trials which seem to indicate that the benefits max out at 1.5 mg per day. Are there folks who benefit from higher doses
It seems around 1.5 mg is a good optimum. I have tried other levels, but have settled on 1.2mg per day. I believe the max is 4.5mg, but there seems to be much advice to say don't go that high.
Tell your wife to take each day as it comes, and enjoy it. I hope she is slow to develop and one of these days, there will be a breakthrough, it has to, I'm 70 now!!!
Best wishes
Ron

Mirapex side-effects
 

Mirapex which I am trying to use in place of Requip seems to be quite intolerable and dangerous for some patients. I highly recommend browsing through this site.

http://www.askapatient.com/viewratin...7&name=MIRAPEX

Ron re. Mirapex ...
 

you said ...

"It seems around 1.5 mg is a good optimum. I have tried other levels, but have settled on 1.2mg per day. I believe the max is 4.5mg, but there seems to be much advice to say don't go that high".

As you say we are all different however I am on 4.5 mg of Mirapex and believe it helps me greatly to stay lower on the L-dopa.

As you say, we all respond differently to the meds however my advice is, if you can take the side effects, go as high as possible on the agonists and stay as low as possible on the L-dopa.

Neil.

I tried 'em all
 

Pergolide, mirapex, requip agonists, MAOI-b inhibitors, selegiline and rasagiline, apomorphine injections for immediate rescue, tried Comtan, the C to O methyl transferase inhibitor. that sent me into my first wrestle with the dyskinesia monster, years before it showed up every day. I nearly totally flicked up my family because I was forced to retire in 2003 and was dx'ed in '97. I let PD get to me much too early. When it gets bad, you had better make sure that you have learned to accept your fate, and there's no time like now to deal with the things thar seem to visit so many of us YPWP. Things like broken marriages, dealing with living alone and forced to take ever increasing amounts of whatever, just to try our best to keep what human dignity that we have left before plunging over the event horizon. It's a tough row to hoe, but may the force of life be with you. Only YOU have the power to become empowered to develop the proper coping skills that will enable you to optimize your future. Depression WILL strike you. You will suffer loss after loss. I found that drugs can help, but do not offer a long term answer to anything. Just remember, PD treatment is currently limited mostly to treatment with chemicals, powerful substances that can lead to development of what amounts to drastic personality changes, and if you don't take charge of your mind, you'll lose it.
I can't stress enough, if you think you know that you have "pre-diagnosed" PD, or perhaps you have seen the monster in an aunt or a grandfather and just know what your first visit to a neurologist portends, then for gobs sake get long term care and life insurance NOW!!!

about that insurance
 

I managed to get both life and LTC just prior to DX 13 years ago but the companies are dusting off their old playbook and are going to screw we Boomers real good. It is working like this- My LTC was with GE and was the best available. Bragged that they had never raised their rate on an existing policy holder. Then somewhere along the line GE sold it to an in-house entity called "Genworth". Genworth discovered, much to their horror, that the Boomers are living longer than expected. So they have started doing like they did for the individuals who used to believe in that one too - they have begun dividing us up into pools of similar ages and jacking the rate up on a given pool as they approach the age where they will need it. You will be forced to let your policy lapse just before you need it. My premium went from $1000 a year ago to $1400 and now to $1700 and have made it clear that it ain't going to stop. The big insurors have milked us and moved on.

Ya, Rev, you are right.
 

In today's world, things were are not like they once were. But. I wouldn't give up on getting any protection that you can. The loss of financial assistance can be one of the factors which drives us to bizarre behaviours which can be our undoing. That is why there should be more financial aid to people living with health issues which are crippling. Along with raising money for disease research, there should be more public empathy for those who struggle to survive because they can't take matters into their own hands. One has to be practically a paraplegic before assistance is offered, and we all know that PWP, have a difficult time because our problems are often masked by the fact that on a good day we can appear well enough to work, but only for short periods before our symptoms reappear in full force, and the nature of our disability shows it's true magnitude.
BTW Rev, can't you collect reduced " benefits for home- care" right now? Some LTC policies state that if you are incapable of functioning at a certain level, they will start your benefits and stop you paying any more.

olcs- Thanks for the partial claim idea. I will try that out before I give up. Here is a joke for you: <Note standard Dept of Household Security Disclaimer: It's a joke you thugs.> :
Q: What do you call a shakey old man in a wheelchair with an incurable disease and a shotgun? A: "Sir." :D

Feed her good organic fruits and vegies (especially blueberries & other berries, papaya, pineapple and watermellon) get an exercise program started...vigorous exercise if possible , good fresh air and lots of sunshine and you will both be healthier for it.