5 years of Sinemet and Dyskinesia

[CuriousMe12]

I've been diagnosed PD 5 years. Slowed a little and stiffèned a little. No tremor. Ìm concerned about sinemet side effects. I use diet and physical activity to help symptoms. I take1 siñemet in a day if I'm about to undertake an arduous activity otherwise none. I am quite happy with this regime for now , relatively pain free and active(appreciating I'll possibly need to increase at some point).My consultant refuses to accept my state, constantly pushing me to take more sinemet.

As one example of concern I've referred consultant to articles describing links from 5 years of high use sinemet/levadopa to Dyskinesia. They deny this link.

My question here is, can anyone point me to a study either proving or disproving this link to Dyskinesia.

Cheers

[park_bear]

Sinemet is strictly for symptom relief. If you are content with the current situation, the consultant has absolutely no business in pushing you to take more.

As it happens the link to dyskinesia has been disproven, see here: pubmed.ncbi.nlm.nih.gov/250...

However, this study shows there is very good reason to keep our sinemet / levodopa dosage as low as possible: pubmed.ncbi.nlm.nih.gov/220...

What can happen when physicians heedlessly push patients to take more levodopa medication: healthunlocked.com/cure-par...

I personally am grateful to be blessed with good physicians. But I have to say some of the reports I see here just leave me shaking my head.

[CuriousMe12 in reply to park_bear]

Thanks for the informative reply. I see the African study was 2014 and does indicate that there is not a link between sinemet and dyskinesia. However most later medical articles googled still talk of the linkage eg pubmed ncbi.nlm.nih.gov/pmc/articl... Michael j fox foundation

michaeljfox.org/news/dyskin...

I think like lots of these studies there is no absolute scientific proof either way only probability based on stats.

Your experience is interesting. Part of my reason for holding back is not wanting to get entangled in drug cocktails via the introduction of side effects.

[Zella23]

My husband has had lots of problems with dyskinesia. His first Neuros answer to any problems with movement was to increase the dose of Madopar.

He was very unapproachable with any other treatments which lead to increasing research on my behalf to try and find out what could be done about the twisting and writing of dyskinesia daily.

A new Neuro was found and he took time with my husband, even took a life history to find out about him! He tried different, PD meds and between his help and the effect it had on my husband the dyskinesia was lessened. It still appears but dosages of meds is kept low.

I would say stick to what you are happy with and what works for you.

pubmed.ncbi.nlm.nih.gov/299...

[JohnPepper]

Have you tried doing fast walking. It immediately starts reversing your symptoms. The more you do it the less your symptoms. The Mayo Clinic report proves what I have just claimed. I have had PD symptoms since 1963 and by 1994 I was hardly able to walk. Then I joined RUN?WALK for LIFE and did fast walking and within weeks I started getting better. Nw, at the age of 88 I am still walking, albeit, not so far and not so dast, but I am well.

[CuriousMe12 in reply to JohnPepper]

Hi John I walk the dog, and a fitness class.

Most of all, tai chi helps me.

I'd propose anyone with PD does any exercise that they can manage, as an effective treatment. As well as somehow helping physically you feel better mentally.

[JohnPepper in reply to CuriousMe12]

I agree wholeheartedly. Keep moving and POSITIVE!

[JohnPepper]

Have you tried FAST WALKING? I started in 1994 and within 2 years alll my symptoms had almost disappeared and have stayed that way ever since, providing I do the walking. I am now 88 and still walking .