Doc is adding Mirapex to Sinemet ...

[Mjm012649]

Husband is in Sinemet 25/100, 4x/day since diagnosis 4 years ago. At recent visit with movement neurologist, he said movement is stiff and could be improved with a medication update. Decision was to try Mirapex. Starting with a .25mg Rx ... take 1/2 tablet a day for 5 days and then titrate up slowly over the next three weeks to 3 pills a day. I am reading up on this medication, and it seems like it is very scary stuff! Lots of side effects and very difficult to get off it if the side effects get too bad. Looking for advice from folks who hve used it.

[Hikoi]

Yep all true, but it also works well for me with no adverse effects. Im happy wiith it been on agonists 10 years. 6 pills of pramapexole a day so 3 is a low dose. All the same Keep a good eye on him for compulsive behaviour. Good luck.

[Mjm012649 in reply to Hikoi]

Yours are the first hopeful words I have seen on this subject. Thank you so much for taking the time to respond. You give me the courage to give it a try.

[daughter-Advocate in reply to Mjm012649]

Hi, how is your husband doing? has the mirapex helped in any way?

[daughter-Advocate in reply to Hikoi]

hi! have you had any hallucinations? was Mirapex the first medication you started with 10 years ago? or did you start with Sinemet (Levodopa)?

my dad is started a combo of sinemet + mirapex, the starting regiment was 2x a day for both which was working amazingly - dad was moving more, happy, moving again, then increased to 3x a day for both, reported hallucinations and the doc reduced both back to 2x a day and eventually discontinued Mirapex.

As we're tracking his symptoms, whenever he's on a lower dose of the agonist, he does way worse. when he's on 2x a day, he seems to be a little better. now that he's only on sinemet along with taking an anti-psychosis med and still having hallucinations, i am suspecting the sinemet is the one that's causing the ongoing hallucinations but doc is not in agreement and doesn't want to titrate.

should we find a different doc or titrate on our own?

hope to hear from you soon

[park_bear]

The adverse effects can be disastrous. Dopamine agonists ought to be reserved to be a last resort medication. Doctors are propagandized by big Pharma to believe otherwise.

[Mjm012649 in reply to park_bear]

In your opinion, what would be the next step? Increase Sinimet? He does stretch exercise 3 days a week, swimming one day, does cardio at the gym every day, walks the dogs and will be starting Rock Steady next month. We really don't want to add more meds, but he would like to be able to move more easily. Increasing Sinimet freaks me out too. Not sure what the next step is 😯. Thank you for taking your time to respond to my question.

[laglag in reply to Mjm012649]

I know you are asking park-bear, who is an excellent resource, but when you mentioned Rock Steady, I just had to chime in. I've been doing RSB since January 2007 and it has really helped me. I did not increase my meds for at least 8 yrs. Just make sure he stays with it 3 days a week & gives it 110%. It's a great workout, we workout hard but have fun at the same time. And, everyone has PD so they know what it's like. Keep fighting!

[Mjm012649 in reply to laglag]

Awesome advice! RSB is on my radar!

[park_bear in reply to Mjm012649]

MAO B inhibitors such as Azilect, selegilne and Xadago are relatively safe and well worth a try. If that does not work you could temporarily increase the Sinemet. For the long-term, definitely start the high-dose thiamine protocol. Also, the following have helped me to some degree: NAC (N-acetylcysteine) 600 mg four times a day, vinpocetine 30 mg once a day, mannitol, one level tablespoon once a day.

[Mjm012649 in reply to park_bear]

Thank you so much!

[Mjm012649 in reply to park_bear]

Just curious ... why do you think MAO B is preferable to the Mirapex? The Azilect, Selegilne and Xadago all list similar, scary side effects as Mirapex.

[Astra7 in reply to Mjm012649]

I’ve used azilect for 2.5 years since diagnosed with no ill effects that I know of. My decline is v slow so far (touch wood!).

[Mjm012649 in reply to Astra7]

Good to know! What dosage? Do you use with Sinimet, or alone?

[Astra7 in reply to Mjm012649]

1 azilect a day and madapor 1/4 4 times a day. Also lots of supplements.

[park_bear in reply to Mjm012649]

Drug manufacturers list as adverse effects every single adversity experienced by any patient during drug trials, regardless of cause, frequency, or severity. Such lists are worse than useless – they have the effect of causing patients to feel helpless to assess the actual dangers. I suspect that is the intended effect. I wrote an extended discussion of how to assess adverse drug effects here: When Good Doctors Prescribe Bad Medicine: tinyurl.com/zvgcu79.

One place look is the FDA label. The most recent label for Mirapex is here: accessdata.fda.gov/drugsatf...

The first three warnings and precautions:

"• Falling asleep during activities of daily living: Sudden onset of sleep may occur without warning ; advise patients to report symptoms (5.1)

• Symptomatic orthostatic hypotension : Monitor during dose escalation (5.2)

• Impulse control/Compulsive behaviors: Patients may experience compulsive behaviors and other intense urges (5.3) "

Unfortunately the FDA label for Azilect is every bit as scary as that for Mirapex, so comparing FDA labels does not help in this case. So let us go to the askapatient website and check on these drugs. Here is the page for Mirapex:

askapatient.com/viewrating....

Here the side effects reported in the very first entry:

"Compulsive-Impulsive spending; Hyper-sexuality; gambling; theft; reckless driving; binge drinking/drug use; legal trouble"

If you scroll down the page you will find a litany of bad side effects.

There are only four entries for Azilect

askapatient.com/viewrating....

but none of them mention any serious adverse effects.

Only four entries for selegiline, a couple mention adverse effects but not devastating.

askapatient.com/viewrating....

My personal experience with a different dopamine agonist was disabling orthostatic hypotension -I was unable to stand without danger of fainting for a month after quitting it.

[PDGal4]

I take Rytary (extended release sinemet) and Azilect. No side effects from the Azilect that I can tell and some doctors believe it slows progression. I was given Mirapex as first drug when diagnosed in 2012. Titrated up and did not agree with me. Mostly nausea. I am now on 4mg Neupro patch, also a dopamine agonist. Supposed to smooth out levodopa fluctuations. It’s a fairly low dosage. The potential side effects do freak me out, but so far, so good after a few years.

I am trying to keep all meds as low as possible. I also walk on the treadmill about five days a week, yoga 3-5 days a week, meditate, take lots of vitamins and supplements. I’d say give it a try. I think getting off of it difficulty is for long-term use. My first time with Mirapex, I had no issues titrating down and off.

On orthostatic hypotension, I have experienced. Cardiologist (who I saw for another reason) suggested I eat more salt. I indulge in a large bowl of potato chips every afternoon and that seems to have done the trick.

[daughter-Advocate in reply to PDGal4]

hi! when you started Mirapex as the first drug, did you have any hallucinations as as side effect from it? What about now from your current patch/the Rytary?

[Mjm012649]

Thank you so much for taking the time to answer. Quick question ...why were you prescribed Azilect? Off times, improve stiffness?

[PDGal4 in reply to Mjm012649]

Azilect is believed by some doctors to slow progression. .5 mg. my neuro says more is not better.

[Hidden]

Azilect works for me, but I only take it at night and keep it at .5 milligrams. I experienced orthostatic hypotension at 1 mg. Drinking lots of water and eating more salt to boost the blood pressure helps. The Azilect seems to make the Rytary last longer at night. Sometimes as long as 7 hours. Good luck finding the right combination. Keep good notes.

[daughter-Advocate in reply to Hidden]

how are you keeping track of your On and Off periods? what are some signs that an off period is coming/the meds is wearing off and it's time for the next dose?