6 Myths and Facts About Dyskinesia in Parkinson’s Disease

[Kia17]

Here are a few of the most common myths and facts about levodopa and dyskinesia in Parkinson’s disease.

everydayhealth.com/hs/parki...

[ConnieD]

Great article Kia! Very accurate, I think the hardest part is when you feel emotions even positive emotions the adrenaline rush does make it worse. I was always an outgoing talkative person but find I say less sometimes not wanting the dyskinesia to increase and this article expresses it well that you don’t want your family members to be embarrassed. It’s hard enough to feel uncomfortable myself. but I definitely dont want to make my kids or spouse embarrassed of me. I think it’s hardest on teenagers. My son in high school never brings over any friends and I often think maybe he’s embarrassed, I don’t push it because I know it’s hard being a teen and wanting to fit in but I’d be lying if I said it doesn’t hurt sometimes. I do have some days when it’s better, my advice if anyone struggles with it is to let people know what’s wrong and eliminate the elephant in the room. Most people are kind and by addressing it you can move on. It brings me to a question I’ve been thinking of and wonder what others would do in my situation in regard to Azilect. I didn’t take Azilect in the beginning I was put on Sinemet from day 1 only later did I start Azilect. The dr said the jury is still out but there might be some possibility Azilect could slow progression. I jumped at the possibility of slowing the disease. Recently I stopped taking Azilect after reading that one of its common side effects is dyskinesia. I think I feel better off it with less dyskinesia. I’m still hopeful about B1 and I am in contact with Dr C but here’s the question: if you had dyskinesia would you continue taking Azilect for the possibility it might slow the disease even if it made your dyskinesia worse??

[ConnieD in reply to ConnieD]

I should add my dyskinesia started weeks after starting sinemet unlike most. I went on to read the 2nd article which is part of what I address here.

[MBAnderson in reply to ConnieD]

Connie,

I’m really glad to see you got a different neurologist. That your previous one would not respect your choice to try different drugs was pretty bad, especially since you were wrestling with dyskinesia caused by her prescriptions.

Rather like saying, “It’s not up to you, it’s for me to decide if you have dyskinesia.”

I assume you have made your decision by now? It would be difficult to give you advice re your question re declining to take a drug so as to avoid dyskinesia because it depends on your personal sensibilities about dyskinesia.

Your experience of getting dyskinesia after being on Sinemet a few weeks makes this a good place to make the point for those recently diagnosed and others who are contemplating beginning levodopa and read articles like this as well as discussions on this forum which assert, ‘It is not the duration of levodopa therapy, but the (increasing) dose that induces dyskinesia,’ to understand that may not apply to them.

The conclusions of (the) studies apply to a majority of the cohort, not the whole cohort -- and that matters, a lot. Your experience underscores that.

The article says, “Myth: Delaying levodopa treatment can prevent or minimize dyskinesia.” That statement, aside from being imprecise and sloppy, is false and misleading.

Delaying levodopa treatment will delay (levodopa induced) dyskinesia.

(Recognizing there are a small percent of PWP who get dyskinesia in the absence of levodopa therapy, but that’s not what we’re talking about.)

The logic of this myth/assertion has always escaped me. It is impossible to get levodopa/pharmaceutical induced dyskinesia if you’re not taking levodopa or pharmaceuticals and therefore, concern about dyskinesia is a perfectly logical and rational reason to delay beginning Sinemet (and some dopamine agonist that also induce dyskinesia.)

For myself, I have decided to delay PD pharmaceutical therapy for as long as possible and that will absolutely delay the possibility of my getting dyskinesia.

I suspect everyone intuitively or instinctively understands this, i.e., you cannot get a side effect of a drug if you’re not taking that drug.

(This is not a recommendation to not take drugs. I don’t make recommendations regarding drugs. I only say what I do and why. Most PWP take pharmaceuticals, consider them essential, and are well served by them. My comments here are aimed at those have not yet started levodopa or other PD pharmaceuticals that induce dyskinesia.)

[ConnieD in reply to MBAnderson]

Hi MB!

If I could turn back time I personally would wait as long as possible before starting meds. I had no experience with PD and took every neuros advice as the voice of God. I’ve learned so much more from you and so many here on HU.”

[MBAnderson in reply to ConnieD]

What you said about your 1st neurologist makes me angry. It's really the epitome of arrogance and ignorance not to be responsive to a patient who says their prescriptions are causing disconcerting side effects.

Your sharing your experience will inform many who come behind us and will spare them from unnecessary difficulties.

[ConnieD in reply to MBAnderson]

Thank you MB! I finished my post but it somehow ended up at the bottom of the thread! After all this time on this site I still don’t know what I’m doing!lol Connie

[laglag in reply to ConnieD]

My thought is Azilect does slow the progression. I've been on it 15 yrs and still do fairly well. I'm on Amantadine also which is supposed to help the dyskensia. I've been on it for about 10 yrs. I hate taking a pill to relieve the symptoms of another, but I'm on minimal meds. I'm having more dyskensia recently but I'm under a lot of stress taking care of my dad that's having some health problems.

[ConnieD in reply to laglag]

I tried Amantadine with great success initially but then it seemed to stop working, maybe I should try again and continue the Azilect . Thank you laglag for your response . Stress does create more symptoms absolutely !

[Rosabellazita in reply to laglag]

Amandine gave me swelling of ankle and blurred vision

[ruff1 in reply to ConnieD]

My husband is just coming off Azilect been in it about 7 years , to start on Safinamide, a MAOB inhibitor like Azilect but newer, selective, will slow progress but also supposed to reduce dyskinesia. He’s had minimal problems coming off Azilect-foot cramps in the morning which he relieves with magnesium spray- and a little off times some days , hasn’t taken Azilect fir a week now , another week to go and will then start Safinamide. Fingers crossed he see an improvement 😀

[ConnieD in reply to ruff1]

Thanks I’ve never heard of that !! I’ll probably need a new neuro though since when I saw her a week ago and asked to switch from rytary to sinemet ER she said no, thanks for the info!!

[ConnieD in reply to ruff1]

Also did your husband want to switch or did his neuro recommend it??? Thanks

[ruff1 in reply to ConnieD]

We don’t see a neurologist didn’t like his attitude we just see the PArkinsons nurse. John was having a lot of wearing off with his Stelevo every dose only lasting a couple of hours so she looked at all his medication and came up with a few suggestions. To cut a long story short we tried a couple but no success so she suggested Safinamide as it is known to extend levadopa by about 2 1/2 hours a day. In the mean time we have been supplementing the Stelevo with dispensable Madapor but this has caused more dyskinesia but has stopped wearing off . The idea is once he starts on Safinamide it will mean he won’t need to take the dispersable Madapor so hopefully his dyskinesia will reduce, especially as Safinamide is supposed to reduce dyskinesia. Hope this makes sense ?

[ConnieD in reply to ruff1]

Yes it certainly does! Please keep me posted as to if Safinamide is a better choice for him, thank you!

[ruff1 in reply to ConnieD]

Will do, he starts it on Friday 14th September 😀😀

[ConnieD in reply to ruff1]

Thank you!!!😊🌸

[ConnieD in reply to ruff1]

Ruff1 thanks I just looked up Safinamide and it’s also called Xadago. It’s interesting because I asked about Xadago once before and my neuro said no. I’m so puzzled why she’s so against any change .

[ruff1 in reply to ConnieD]

I imagine she’s against Xadago as it’s expensive! In the U.K. ( don’t know where you are ) only consultant and PD nurse can prescribe it not GP, but PD nurse has just emailed me to say GP will soon be able to prescribe it so we don’t have to collect it from the hospital 😀

[ConnieD in reply to ruff1]

I live in the U.S., as of yesterday I have a new neurologist that I will see in a couple weeks. I heard of him here on HU and they say he’s more open minded and the ironic part is he’s in the same practice as the neuro I was seeing. I don’t think it’s the cost since rytary is expensive also but the nurse yesterday said she’s very rigid where he’s more open minded. Just different approaches I guess. But for me I need a dr. I can talk to.

[Juliegrace in reply to ConnieD]

I've never taken Azilect, but I've also never heard or read anything that it causes dyskinesia. Do you have a link to where you read that? Several of the neurologists I've seen are aware of the severity of my dyskinesia (like yours, as you know) and have suggested Azilect.

[ConnieD in reply to Juliegrace]

I don’t know how to attach something here I use my phone but go to drugs.com and look up Azilect it mentions it at the top and again under nervous system when you scroll to the bottom under very common side effect 10 percent or more. Tell me your thoughts. Somewhere it mentions possibly lowering levodopa to offset but I find it difficult to keep that low enough already, idk

[ConnieD in reply to Juliegrace]

Julie grace even under Azilects official site it says “may cause or exacerbate dyskinesia”

[lempa_nik in reply to Juliegrace]

From drugs.com/sfx/azilect-side-...

under Azilect/side-effects, the first thing they mention is :

"In Summary

Common side effects of Azilect include: dyskinesia. See below for a comprehensive list of adverse effects."

A truck load of other possible side effects from Azilect are listed following that.

[ConnieD in reply to lempa_nik]

Dumpelkin what are your thoughts: would you take it if you already suffered from dyskinesia, since I’ve stopped it seems better. I know with some drugs the pros outweigh the cons. My concern is that dyskinesia is under common side effects and on the Azilect site it says may cause it or exacerbate dyskinesia . I know many of us take it but my dr who prescribed it said the jury’s still out as to it’s slowing progression. If I didn’t have dyskinesia I’d be concerned it could cause it. Confusing but the trials they did must be positive. Appreciate your thoughts

[lempa_nik in reply to ConnieD]

Personally--and this is just my opinion--I would not (and actually do not) take the azilect. For one thing, the FDA panel voted unanimously (17 out of 17) against certifying that azilect slows progression because the evidence was very mixed:

michaeljfox.org/foundation/...

On the other hand, the downside of its many risks, including dyskinesia, seems to be accepted fact. I believe that the known risks outweigh the uncertain reward--and, indeed, slowing the progression would be a gift, if true.

[MBAnderson in reply to lempa_nik]

Thanks for the post. Now I've read studies that draw both conclusions. Being a unanimous vote should probably be the deciding factor.

[lempa_nik in reply to MBAnderson]

MB, It sounds like you're coming down on the side of skipping the Azilect. Same here, especially since I am averse to the pharmaceuticals in general. The more you add, the more hoops you have to jump through--with dietary restrictions and drug interactions, etc.

[Rosabellazita in reply to ConnieD]

No

[Erniediaz1018]

Great article. When I first experienced dyskinesia and mentioned it to my neuro he said that the excess dopamine which the brain doesn't know what to do with is causing the dyskinesia because it's sending it out to the muscles or something to that effect and I thought huh that makes sense. He prescribed amantadine which works very well but I take it only when I eat screwy. For example I've realized, when I eat eggs or drink coffee the dyskinesia comes in like a monster. I also get a tolerable dyskinesia when wearing off the levadopa and that's inevitable. This article explains everything pertaining to dyskinesia in simple terms. Thank you.

[ConnieD]

Thank you dumpelkin for your thoughts !

[SufferingSocks]

Great article Kia - I'm finding this discussion on medications so interesting! Thank you ConnieD and others. Suffering Socks

[ConnieD]

Accidentally pressed send! Anyway I have a new neuro and although he’s ok with supplements, he too wouldn’t let me switch my cd/ld drug which is frustrating. My body is very sensitive and even MP causes dyskinesia. I don’t have dyskinesia off meds but feel I am too stiff to get much done. I’ve thought about giving the keto diet a try since 2bats was able to get off sinemet that way. Ive stopped everything else I only take Sinemet. So if I was lucky maybe I could stop it too! Dyskinesia is life altering, people are concerned about getting it for good reason! I wish I could say something positive about it but when it’s at it’s worse it’s brutal. People shouldn’t follow my advice, this is just my personal experience. You’re smart to delay MB!! Wish I had a time machine!!

Connie😊

[MBAnderson in reply to ConnieD]

Connie,

Time Machine, if only -- I knew how truly ignorant I was at a time when I thought I was so smart.

Do you feel you have exhausted the various ways to use MP, i.e., perhaps 15% or 20% instead of the higher percents to more fully exploit the effects of the rest of the plant?

You mentioned you had hopes for B1, perhaps the injections would work better. They are inexpensive ($23 for 6 doses of 100 mg) and low risk, so maybe a prescription would not be too hard to get.

[ConnieD]

You are right I have not exhausted everything, I will look into a lower dose MP the last one I tried was 30 percent which was too high for me. I would like to try the B1 injections and need to make a point of looking into it further! The time machine sounds so much easier don’t you think!?Thanks MB I always appreciate your advice!! Connie😊

[Hikoi]

Interesting discussion though I think some of it may be frustrating to some. See this thread.

This article makes it very clear, to me at least, that it is not long term use of levadopa but length of time with pd and other known and unknown factors that determnes whether and when you get dyskenesia

ncbi.nlm.nih.gov/pmc/articl...