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Lorit249

Scared about meds

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I'm 49 and just diagnosed.  Well waiting for MRI to confirm.  I've read about meds and that there are problems with. Long term use.  It said that YO sometimes start with other meds but didnt explain what they do.  I'm curious to hear your experiences and especially side effects.  Will I ever feel like me again? The old me?  i admit I'm overwhelmed with this and trying to remain positive but it'sreallly hard.

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Everything in life involves trade offs.  Meds for PD are no exception.  

 

Ive been taking carbidopa/levodopa since my Dx 19 months ago.  Only side effect since then was daytime sleepiness.  So I switched from the regular instant release (often called Sinemet) to an extended release version (Rytary).  Same medication, just different rate of release.  I feel like I did 5 years ago as a result.

 

However I know that the trade off is a high probability of dyskenisia (bad movements) at some point in the future.  However, the latest research shows that you probably aren't saving yourself much if anything by delaying those meds. It is the total dose of levodopa that causes that side effect more so than duration of taking it.

 

There are other meds you can try too.  Primarily the dopamine agonists like Requip and Mirapex. However those have their own risks, including impulse control disorders, and sleep attacks (suddenly falling asleep when that is inappropriate like while at work or driving).

 

Some on here choose to not medicate at first.  For them exercise is a key part of fighting the disease, as it really should be even if you are taking meds.  It will boil down to whether the symptoms are more bothersome for you than the risks of the side effects.  But the meds are not something to fear, just something to consider with deliberation.

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I'm doing great on Sinemet with absolutely no side effects - I usually take two a day, sometimes 3.  My naturopath, who treats only Parkinsons and works with the MJF foundation, is convinced you can avoid dyskinesia with taking it with fish oil.  She has also found that her patients on Sinemet have slower progression and recommends starting it right away. I do take multiple other supplements which are extremely helpful to me and I exercise daily.  I actually feel like I have the best health I have had in the past 20 years.  My health gets better every month and my PD symptoms decrease, a little at a time.  At this point all I have is mild motor issues.  I did start with azilect prescribed by my neurologist and it made me much, much worse.  You can definitely have good quality of life:-)

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I take the agonist mirapex. I have not had any problems with it. I'm exercising as well. I have not needed a dopamine replacement so far. My MDS says when PD changes the way you live your life, it's time to revisit your meds.

 

LAD

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I think you should be concerned about all meds that you take.  Doctors and drug interactions kill at least 783,000 people each year.  The big problem is that doctors are taught to prescribe a pill for just about everything.  The side effects from many of these drugs are much worse than the benefit they provide. 

When I was first diagnosed with PD, my neurologist prescribed Mirapex, which is a dopamine agonist.  In all fairness, the Mirapex did somewhat improve my symptoms, but the most disturbing side effect was that it would cause EXTREME fatigue.  I quit taking it when I fell asleep at a stop light.  I could have easily been killed while driving as a side effect of this drug.  The Mirapex was MUCH more dangerous than the PD.

All of the PD meds have side effects.  Prolonged use of Sinemet in PD patients causes dyskinesia, which is the uncontrolled movement that you see in people that are taking the drug.  Is the side effect worse than the PD?  In the opinion of my MDS and many others, the answer is yes.  My MDS recommends treating PD with exercise and only starting PD meds when they are really needed.  Many other neurologists and MDSs prescribe PD meds like candy.

The motivation in prescribing many of these drugs is money.  Just watch TV for an hour.  The two predominant commercials are for drugs and lawyers.  In many cases, the law commercials are advertising suing doctors and drug companies - LOL!

I was diagnosed more than 3 1/2 years ago and don't take any PD drugs.  I have no intention of starting any time soon.  I do take a medical marijuana tincture, which helps with the tremors; sleeping difficulties; urinary urgency and frequency; fatigue; and more.  The medical marijuana has no side effects that I can see.  The medical marijuana is not pushed by my MDS or big pharma because they don't make any money from it.

 

 

 

Edited by PatriotM

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I guess I am fortunate to be doing well on my meds and my MDS started me on small doses of everything. But I am a firm believer in the exercise part of things. I probably had PD for 2 years before my DX but exercise held it at bay. Exercise is medicine for PD. 

 

LAD

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I agree with Stump and here's my add. I was able to push through my symptoms for the first 6 years no drugs. There came a time when i could not safely drive any more and I started mirapex. 

Over the last 6 years my drug intake has progressed as my symptoms have progressed. 

I have always exercised from being a 6 sport athlete through junior high to a 3 sport athlete in high school. When I was diagnosed I was playing tennis 4 days a week, yoga 1 a week and an hour cross training class twice a week. I can assure you exercise may slow progresion of PD but it does not stop it. 

I have remained stable for the last 2 years on the same dose of rytary and mirapex .  I take 9 48/195 rytary a day and still have 2-3 hours of off time. I infrequently get dyskenisiias but consider myself lucky to be able to take so much rytary without too many problems. I tried 10 rytary a day for a 2 week period and had to quit because I became disoriented and kept passing out due to low blood pressure.

so yes exercise all you can. I still go to Rock Steady boxing 3 days a. Week, play tennis once a week and ride my bike 6-8 miles 4 times a week. But as time goes by, you will probably have to take some medication. Don't fear it, but do prepare yourself for it. Medication is not any sort of failure on your part. It is simpler addressing your disease and improving your quality of life. 

 

Delta

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Delta - What were your symptoms the first 6 years?  It's hard to use my right arm and The good thing I was thinking about meds was getting it back.  Thank you

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The first thing  that I had to adjust for was brushing my teeth. I could no longer move the brush in circular motions. The quick easy fix was an electric toothbrush. Then I could no dry/style my hair with my circular brush so I got a different hairstyle and wore my hair straight. I started dragging my foot and tripping frequently, so I started wearing sneakers more and more. A lot of little things that no one noticed but me. Before I started taking medicine I couldn't always cut my own food, I couldn't clap my hands and both my children played high school and travel sports. The last straw was when I was having difficulty turning the steering wheel. 

Literally the first day I took mirapex all those symptoms went away. I never experienced compulsive behaviors, but I definitely had sleep attacks. I once fell asleep while I was talking. 

I believe it's time to start/change medicines when your quality of life is being impacted.

Delta

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I think taking drugs really depends on whether the symptoms are affecting your daily life. My tremor and "off" feeling we're bad enough to make me feel like I wouldn't be able to work very long after my diagnosis. I have had to double my Levodopa dosage to 600 mg recently to take care of my symptoms.

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I agree...if your PD keeps you from doing what you want to do and impacting your quality of life...look at meds/new meds.  I'm 48 and going on 3 years. I'm holding my own with mirapex and exercise...lots of exercise. I do Parkinson wellness recovery fitness program and take dance classes with my husband. 

It's a personal decision...no right or wrong answer. 

 

Good luck! 

 

LAD

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I have to say that my symptoms are very reduced.  I started doing interval running/walking and eating bananas and taking turmeric (sp?)  My pain in my leg is almost none existent and my tremor is about 50% of what it was - All thanks to this forum!  I meet the specialist next week but my plan is to keep going the way I am.  I ordered a new bike seat too!

 

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Entirely depends on the individual how the meds will treat you.  Some people react well to PD meds and some dont.

I've been pretty lucky.  I haven't had any unbearable side effects.  Ocassional nausea and slight dyskenesia in my feet is about all that bothers me.  Considering I wouldn't be able to get out of bed without Sinemet, the trade off seems worth it.


Mirapex and Requip really messed with me, so I dont take them. 

 

 

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Absolutely, reading about all the possible side effects will scare the crap out of anyone. I think the key is being aware of them and knowing your body. Your care partner should also know what to watch out for. Ultimately, you have to weigh the risks against the benefits, and do what works for YOU. I am on several medications, which I tried to avoid, but I decided that all anyone really has is today. I want to squeeze as much out of it as possible; tomorrow is not promised to anyone,  PD or no PD. I will deal with consequences if/when they arise.  

I go to Rock Steady Boxing as much as I can, usually 2-3 times a week. I notice my symptoms more if I go too long between sessions. 

I wish I could say I feel like my old self, but even on my best days, I'm aware of the deficits on my right side, although it seems minimal. Less than I'd wish for, but I'll take it.

It is sometimes difficult to keep a positive attitude, especially at first. Continue to do the things that make you happy for as long as you can. (We recently got a new puppy!) Find a support group of some sort; RSB has that fringe benefit. You can never have too many Parkie friends; they're the only ones who truly understand what you're going through. 

Edited by secret squirrel

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You may be able to delay Sinemet if your body reponds well to something natural like mucuna which,is essentially natural dopamine 

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Chiming in...just saw a neurologist here who will be my Doc. I was diagnosed originally by a different neuro. This Doc wants me to take Azilect. I am loathe to do so but am rapidly losing fine motor use of my dominant hand. 

I have otherwise been feeling so well! Supplements, Chinese herbs, medical MJ, exercise. I don't want to mess with some whacked out pharma. Ugh. 

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