Can moderating meds forestall diskinesia side effects?

[Peony73]

My doctor prescribed I take three doses of Carbiidopa/Levedopa daily, but from my reading it sounds like C/L over time can cause diskinesias. I felt like perhaps by moderating the amount of C/L daily now I could help to cut back on future diskinesia side effects. Does anyone have knowledge on this? I’m 68 and I have had the symptoms of Parkinson’s for about eight years. I only started taking daily C/L earlier this year, after going on other meds like Azilect and Requip earlier in the course of the disease. Thanks!

[lenamm]

I got severe dyskinesis on very low dose C/L in less than two years yet others take 20 pills a day for years without issue. It seems to be more about the individual than the amount you take. So I would take the amount that serves you best now and not worry about it.

[Peony73 in reply to lenamm]

Was there anything to help you with the diskinesia s once they started?

[lenamm in reply to Peony73]

I tried everything medicine and supplement wise and nothing helped. I had brain surgery in Switzerland in April and now am dyskinesis free on my treated side and about 70% reduction on my untreated.

[lenimoo in reply to lenamm]

Hi lenamm what benefit have you experienced after your treatment in Switzerland ( Sonimodul)

[lenamm in reply to lenimoo]

My friend copy and pasted most of my responses here healthunlocked.com/parkinso...

[Juliegrace]

I had dyskinesia almost from the start and get it from very small doses. I take c/l 10/100 because they are a little more manageable for me. It makes sense to take the smallest dose you can manage and still function, IMO.

[JAS9 in reply to Juliegrace]

Have you tried any extended release meds? It spreads the release out over several hours so there's less of a peak all at once.

[Juliegrace in reply to JAS9]

Yes, I tried Rytary and c/l CR. Neither improved my situation. They both just made things less predictable.

[lenamm in reply to JAS9]

for me I can only take Sinemet ER, Rytary was horrible and so is Sinemet IR. My dyskinesia is biphasic though, not peak

[JAS9]

I believe that it's generally accepted knowledge that keeping your dose lower causes less dyskinesia to develop. I've read accounts of people with dyskinesia finding some relief from it by reducing their doses. I began experiencing some and reducing my dose slowly over several months by 17% did help quite a bit. It's not quite the same since your question has to do with keeping it low from the start rather than lowering it later, but I think it's close enough.

[Peony73]

Thank you, those who have responded.

[rebtar]

My understanding is also that dyskinesia is a very individual thing. Some people develop it from the start, others never. Disease progression is also a factor. So it’s dose+progression+individual response.

My opinion is that it’s not worth it to limit your dose if it doesn’t give you an acceptable level of symptom control. Symptom control allows you to exercise which is the ONLY thing proven to slow progression. For many people who develop dyskinesia, it’s mild and doesn't interfere with functioning. If you do get dyskinesia, you can work with your doctor to find a solution. His/her first question should be, “does it bother you”? I’ve met a number of people with dyskinesia which is noticeable, but who are still working and doing quite well.

So I would suggest not letting fear of dyskinesia be your main criteria, but rather, what will allow you to function as well as possible and give you a good quality of life.

[MBAnderson]

While it is true, that it is an individual thing, I think there's some data that says approximately 50% of the PWP will experience dyskinesia after 5 years of levodopa therapy and 70% to 90% will experience it after 10 years of levodopa therapy. It doesn't matter to me if those percents are exactly right or not, because there is some set of percents. For me, I'm taking as little as I can.

[andrehypnotic]

Take it only should you trust your Doctor 👨‍⚕️

[Tribselyov]

Peony,

We are following a similar course. I am a retired surgeon, now 7 years into Club Parkee. It is not clear that you can forestall dyskinesia but it does seem to be reasonable to limit your C/L. (C/L may reduce symptoms but it has no effect on progression.)

[MBAnderson in reply to Tribselyov]

What do you think of this theory? If a PWP could delay regular use of Sinemet for, say, 8 years, they would start a lower dose than where they would be had they started Sinemet in the 1st year.

1 of the more common discussions on this forum is that of people trying to figure out how to reduce their dose. Why not try to delay getting to that point?

[Hidden]

Doc Costantini says no dyskinesia while taking high dose thiamine hcl with your C/L

[MBAnderson in reply to Hidden]

Dr. C would agree (I hope ) that only applies to some people - like all things.

How is he doing, by the way?

[Tribselyov]

Concur.... I favor slow "titration" based on symptoms rather than the clock and dogmatic instruction. We tend to be an obsessive-compulsive lot and I fear over treatment more than under. We are all different.

[Peony73]

You are all giving me things to think about. Thanks.