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deciding about drugs

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I am a healthy 54 yr old woman, diagnosed with Parkinson's in January 2017. I am debating starting medication but scared of all the side effects. I am still working, exercise a lot (hiking, biking, XC skiing, eliptical trainer for high intensity, stretching/strengthening routines...2 - 3 hours/day)  My main symptoms are motor - decreased arm swing, difficulty typing (left pinky and next to pinky fingers slow to respond), starting to have issues with left foot/gait.

For example when I am backcountry XC skiing my left foot glides slightly  to the left instead of straight. On a tracked trail or hill I am fine.   I don't have any cognitive symptoms, did voice therapy and voice is fine, I have  lots of energy.

Which drugs are best motor symptoms? Esp for my foot issue?  My neurologist said to try Azilect but side effects seem worse than my symptoms. Falling asleep with no warning while driving - yikes! 

Also, what about some of the supplements like  glutathione therapy,  Inisine, couco?

Thanks for any advice/insights...

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Hiker,I am glad to see that you have researched your options for possible medications. There a few different choices when it comes to medications used to help motor symptoms in Parkinson's Disease.

Azilect is usually the drug of choice for relieving motor symptoms. When I council patients about Azilect side effects or complications I focus on the most common issues first, which would be some upset stomach, possible joint pain, and insomnia (which is most prevalent in the first few days of therapy). The serious, but RARE, side effect of serotonin syndrome when take with certain anti-depressants. I have discussed this with hundreds of doctors, neurologists, and movement disorder specialists and have been told that they have not seen this reaction in any of their patients. The other issue of concern is the interaction of Azilect and tyramine rich foods (aged cheeses, cured meats, tap beers, and certain wines). This warning has since been removed from the labeling process due to the fact that Azilect has such a great affinity for MAO-B and very little, if any, affinity for MAO-A (which is where the interaction takes place.

Amantadine is another medication used to help with motor symptom problems. Amantadine is primarily used as an antiviral, but in further research it has been shown to help with motor symptoms in PD patients, though the actual mechanism is not fully understood. It is usually prescribed as a twice daily dosing but, a long acting amantadine called "Gocovri" has just been brought to market specifically for motor symptoms of PD. Some possible side effects may be lightheadedness and a lowering of blood pressure upon standing.

As far as natural products are concerned, I will usually recommend that a person who has just been diagnosed with PD stay with prescription medications to start. This is mainly due to the fact that these products are not regulated by the FDA and have less stringent rules of their production and claims of how they work.

I make sure as a Pharmacist I make sure that my patients know what are the main side effects to look for. When a patient sees the entire list of possible side effects, it can become overwhelming.

I hope this helps and please keep me posted.

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I am a layperson who was diagnosed with pd 15 years ago at age 48 so i can only relate my experience and the experiences of other pd'ers i know

1. to quote a neurologist i know, "you take  pd meds to help you keep exercising since exercise may slow progression".  if you couple that novel theory with increasing chances of a cure then imho caribidopa/levodopa (generic sinemet) might be worth considering since it will likely give you the best benefit.   i played on a very competitive men's soccer team for 3 years after being diagnosed, taking mirapex  in the 3rd year and quitting soccer when i could no longer compete well enough  just taking a  minimal amount of  mirapex and was afraid of staring sinemet.  quitting men's soccer was probably a good idea, guys just take the game too seriously and there was too great a chance for injury, but i also cut back on other vigorous exercise such as running, basketball, x-c skiing and maybe as a result started to progress faster.  i eventually started on sinemet in year 5 and at 63 i do pretty well on it with no dyskinesias and the only side affect is low blood pressure if i take too much.  i did have the well known "honeymoon" period for about 7 years where i didn't depend on most of my l-dopa from sinemet (my brain was still producing/storing useful amounts of dopamine) so timing wasn't critical.   my point is i don't think you'd be risking anything by trying sinemet for a month, you can always quit.  some of the older literature described studies where sinemet  damaged nerve cells in culture so people held off taking it until they had too.  this has been disproven i believe by finding no damage in the brains of people who have had to take sinemet for non-pd diseases, think they had dystonia.   i know a number of pd'ers whose neuros just prescribe azilect and they are slowed by arm, hand and leg rigidity and just accept it rather than add sinemet.

https://www.michaeljfox.org/foundation/news-detail.php?ask-the-md-myths-about-levodopa

i've tried just about every  alt-med treatment for pd and numerous supplements and none helped much.  chelation therapy, i.v. glutathione, low dose naltrexone, coq10.   the only thing that helped was exercise, after a soccer game i felt great for a day.  think about it, with social media able to distribute anyone's success with an alt-therapy, how can there be any uncertainty about any alt-therapy working or not working?   if it helped there would be no doubt, we'd all be doing it.   if you decide to try carbidopa/levodopa keep in mind that generics are not equivalent and one brand might work better for you than another, for me, the mylan brand works best.   personally, i'd like to know sinemet worked now rather than waiting 5 years and finding out it didn't.

i suggest you read the book THE NEW PARKINSON'S DISEASE TREATMENT BOOK by J. ERIC  AHLSKOG.

 

 

 

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My belief on taking Sinemet now as opposed to waiting is a belief that many neurologist's are believing today. That belief is one that "why wait to take a medication that can work today." This belief has become more prevalent over the past few years and is picking up steam. I am 49 and was diagnosed at the age of 29. I started Sinemet therapy about 10 years ago and have not looked back. My dosage has increased a little bit over the years, but not a significant amount. I have remained active and have learned to keep by off times to a minimum.

I hope this helps and plese keep me posted.

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Hiker,

I am glad I could help. Please keep me posted if there is anything else you need.

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My husband has been on Sinamet for about 6 months, 3 times a day.  He has become an addict to his Theracycle bike...sometimes doing an hour and a half a day.  It really helps.  He of course has good days and some days where he is blah, but we work with it.  His Sinamet is low dosage.  At his last visit the doctor increased it to 4 times a day and wanted to add on Azilect.  He increased the Sinamet but when we found out how much the Azilect cost (over $2,500 per year and we have a very good insurance plan!!) he decided to just stay on the Sinamet since it works well and there was no evidence that Azilect would show significant gains over what the Sinamet was handling and tolerated.   In fact he is cutting back the Sinamet to 3 times a day since the increased dosage makes him feel "drugged".  

My point in all of this is that medication differs for everyone.  Sinamet seems to be the gold standard right now.  But the best medicine is EXERCISE.  Pick one that works for you.  And, along with your doctor's guidance, don't be afraid to try things.  What works for my husband may not work for you but we are all in this together and we just need to fight the bastard PD back as best we can.

Good luck, keep your eyes open, research, don't be led astray by "miracle" cures or crazy supplements.  Like soccertese10 said don't go down the crazy path....if it worked, we would all be on it and howling at the moon. 

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Hi.  I waited two years before seeing a Dr. and getting on meds.  I was a big believer in alternative treatments and did not want to put in my body a bunch of chemicals with side effects that would require more chemicals to counteract the effects.  Once I started taking the prescription medications, my life improved.  It is not always wonderful, needing vigilant observation and occasional to frequent adjustment, but the quality of life on meds is much better than the quality of life off meds. I have been dealing with PD for 15 years.  I have to do my own research and figure out what is going on because most Doctors are very reluctant to give comprehensive info to the patient(in my experience).  Stay on top of things, exercise frequently and be your own advocate.  Good Luck.

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Capcodmomma,

you are correct. the more we keep moving the better everyone's health will be. With or without PD. Also, sleep is so important to PD patients. It is the time when we use our muscles very little, which allows us to "store" Dopamine from our existing Dopamine cells.

I hope this helps and please keep  me posted. 

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dmCwolfe,

You have the right attitude and commitment. We are always here to help you along the way.

I hope we can help you when you need it and please keep me posted.

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I thoroughly enjoy your forum.  I have obtained so much knowledge by reading the various posts.  It is obvious that you care.  Thank you for being here for us.

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