Vicious circle of adding new medicines to the daily menu of PD drugs

[Farooqji]

When initially diagnosed, we start our medications from dopamine agonists, anticholinergics, and other anti-Parkinson's medicines and then off course the levodopa. The neurologists and movement disorder specialists mere add a new medicine to patient daily regime upon complaints of new symptoms. They know ZERO about what's going on in the brain and body. They have just memorized the names of the medicines and even don't know about the mechanism of action of these medicines. In this scenario patients are more knowledgeable than the doctors. In my opinion PWP should only take levodopa and refuse to add extra medicines to the daily routine. Adding on new medicines to one's regimen is just like sinking slowly in the quagmire.

Supreme Court Justice Oliver Wendel Holmes had rightly said:

“If we doctors threw all our medicines into the sea, it would be that much better for our patients and that much worse for the fishes.”

[gaga1958]

My movement disorder neurologist started out with C/L so I never had anything else. However, after 10 yrs with PD, I started having too much "off" time. Too much C/L causes/contributes to dyskinesia so I didn't want to increase that if something else would work. Dr added "entacapone" which does nothing on its own, but added to C/L extends the dopamine's life somehow. It does give me several more "on" hours.

[Farooqji in reply to gaga1958]

Entacapon is known for exacerbating dyskinesia

[gaga1958 in reply to Farooqji]

Since I don't have dyskinesia, it won't exacerbate it. or do you mean it can cause it?

[park_bear in reply to Farooqji]

Helpful here and no adverse effects.

[Farooqji in reply to park_bear]

You are telling about your personal experience? Do you take it?

[park_bear in reply to Farooqji]

Yes and yes. Nothing wrong with medications that help levodopa do a better job.

[Farooqji in reply to park_bear]

Thanks.

[Gcf51 in reply to park_bear]

The only PD med, I take is C/L, I haven't experienced dyskinesia. I have questioned whether some of my tremor maybe dyskinesia, but my tremor is just right hand and Rhythmic, so I don't think it is dyskinesia.

Would Entacapone lessen my C/L and reduce risk of dyskinesia?

[park_bear in reply to Gcf51]

Entacapone lengthened my on time. It did not make enough of a difference to be able to reduce my C/L.

[Gcf51 in reply to park_bear]

Thanks,

I am currently taking C/L: 3 morning, 3 midday and 2 evening (8 a day) with less than 30 min periods of some return of symptoms before next dose.

Edited: Change back to 8 a day from 7 return of some symptoms was more than an hour at 7.

[park_bear in reply to Gcf51]

You can try entacapone. Another option worth considering is an MAO B inhibitor such as Azlect or selegiline.

[peminc]

I sympathise with your sentiments.

[Windermere1]

before my MDS added Opicapone to my medication list I was taking c/i every 3 hours. Now I take one Opicapone at 9pm followed by c/l 4 x a day. These changes have made my life worth living. And I am actually reducing my c/l because Opicapone makes the levodopa work more effectively

[Aikidodrummer]

I'm 65 ,7 years since diagnosis. Started c/l 5 years ago . About 9 months ago my doctor added amantadine 100mg 2X a day .Since then my tremors have have almost disappeared. Of course I don't like taking medicine but it's improved my quality of life ,along with practicing TaiChi and exercise.

[BeedieBird]

We have a serious issue in our society with over medication. There should be patient advocacy groups with backgrounds in health and medicine helping patients with 'deprescribing' as these drugs cause more harm to our bodies and brains than they do good. If you are newly diagnosed start instead with Mucuna and see if it helps. Add a natural comt inhibitor like Quercetin. Fast walk. Eat healthy. You're right, they have no clue what is going on inside our brains. They can only 'infer' from scans, biopsies, clinical exams, etc. The only sure way to know is to cut the brain open and examine - 'postmortem'.

[Farooqji in reply to BeedieBird]

I agree "If you are newly diagnosed start instead with Mucuna and see if it helps"