does dyskinesia go away when people stop taking levodopa?

[Lucas_s]

If no, it indicates that levodopa somehow damages the brain

[cgreg]

Another possible explanation is that Parkinson's has advanced to the point where it causes dyskinesia whether or not the patient has been taking levodopa.

[gomelgo in reply to cgreg]

Have you ever heard of anyone who did not take meds and got dyskinesia anyway? I have asked several neurologists (I went through 4 and am currently sticking with my fifth.) And every one was adamant that one only gets dyskinesia from the meds. If they were wrong, I'd like to know. Thanks.

[cgreg in reply to gomelgo]

Hi Gomelgo. Please refer to the ff. study : ncbi.nlm.nih.gov/pmc/articl...

[gomelgo in reply to cgreg]

"Published online 2014 Jul 17." Really, has there not been any progress on this in the last 9 years?

[cgreg in reply to gomelgo]

This 2021 study suggests genetic factors affecting the role of Levodopa in developing dyskinesia. pubmed.ncbi.nlm.nih.gov/339... Another study from 2020: pubmed.ncbi.nlm.nih.gov/323...

[Xenos]

Mine does : dyskinesia stops if I am under the threshold of 100 mg (taken in the morning)

[MBAnderson]

Usually, it does.

[Kevin51]

mine goes away completely when I stop taking meds.

[jeffmayer in reply to Kevin51]

How do you function

[Bunny622023 in reply to jeffmayer]

Basically most people cannot just stop meds. Dyskinesias are 'usually' from excessive Levodopa. BUT in saying that - they do not always go away from lowering meds we have found.

[Zella23]

My husband mostly has dyskinesia on and off after taking his C/L during the day. In the evening after last dose it stops, then nothing til it starts about mid morning the following day.

Has tried keeping on doses at 50 mgs each dose but gradually the dose gets too low for helping with anything. It’s been a work in progress for a few years and just when he thinks he’s cracked it - he hasn’t! Only takes 350 mgs per day C/L.

[Esperanto in reply to Zella23]

And if he takes the 50 mg C/L dosages more often?

[Zella23 in reply to Esperanto]

He has tried that but after a day or so he gets too slow to function correctly it’s really strange but doesn’t work for him. Dyskinesia kicked in after 4 years of meds.

So he takes 1 x 100mgs in the morning, 50 mgs at about 11 30am then 100mg at 2 30, then 50 mgs at 5 30 pm. So 300 mgs altogether. Occasionally takes an extra 50 mgs.

100 mgs seems too much as a dose and 50 mgs not enough to work.

He has experimented with different dosing times, used to take much more but cut down about 4 years ago. He also takes Rasagaline in the morning, which helps with keeping dopamine from breaking down.

[Daisies22 in reply to Zella23]

Hello,Do you mind my asking, how did your husband managed to reduce the dose of madopar that much (and how much is "much more" )?

I've only managed to get from 1100 mg to about 850 mg per day after four years on 1100 mg.

Thank you in advance.

D.

[Zella23 in reply to Daisies22]

From diagnosis 8 years ago started on 3 x 50 mgs C/L a day gradually the Neurologist put it up over 4 years to either 400mgs/500mgs a day. He has kept records, but that was the maximum he reached. He was getting a lot of dyskinesia and didn’t really need anymore C/L so at that point, cutting a long story short, we changed Neurologist.

We ve been with the 2nd Neurologist 4 years now and he can’t understand how he functions on such a low dose either!

It might be all the alternative things he does, who indeed knows!

[Esperanto in reply to Zella23]

With the 'Graph Levodopa Equivalent Plasma Levels' by John Turner you can see that quite large peaks and troughs arise with the current rather irregular intake pattern. Between 30 and 110. If you could adjust the dosage with 6 doses of 50mg with an interval of 2.5 hours, you will stay between 35 and 70.

parkinsonsmeasurement.org/t...

[Zella23 in reply to Esperanto]

We have tried that but it was a bit unworkable with timings, spent all day taking pills and it wasn’t very successful he really slowed down after a few days. He has found if by taking a lower dose at 11 30 he could keep the C/L dose more even. He has tried many times changing it around. This pattern seems to work the best for him and dyskinesia is kept to a minimum.

[Daisies22 in reply to Zella23]

Thank you.Well, at least the first Neurologist started him on a low dose. Mine prescribed me 5 x 100/25 mg Madopar per day and this immediately sent me to A&E. It's been 5 years since diagnosis for me and I still can't find the winning formula.

Thank you again for taking the time to write to me.

All the best!

[Zella23 in reply to Daisies22]

I think all adjustments need to be done slowly, that’s what we find sometimes many weeks! Then we think we ve cracked it then we realise it’s all change!

Last night my husband suddenly said he’d forgotten his 5 30 pill so he didn’t bother. He went all evening, all night and took one this morning at 9am ! Feeling good today and no dyskinesia - doesn’t ever follow a pattern or make sense!

Does do some alternative things, maybe they help! Stripping beds at the moment! Long may it last!

Take care!

[Daisies22 in reply to Zella23]

I agree, all changes have to be done very slowly. And like you said, things not always make sense. What scares me most is that I go from a perfectly normal state to almost completely paralysed and bedbound within a few minutes. This paralysed state could last for hours, and If there is no one around to give me my medication very serious things can happen. I can't go out of the house, it's that bad.My Neurologist is very dismissive and adamant that such extreme reaction could only be psychological. I strongly disagree with him as what I described above happens every time when I take madopar. Nothing what happens is random.

I wonder if there are other PwP who have the same experience.

[Bunny622023 in reply to Zella23]

Totally agree with you Zella23 there is barely rhyme nor reason why something works one day and not another. My husband takes 2100mg C/L per day....pretty high dosing but he is tolerating it fine. Most days he has NO Dyskinesias but then if he has worked out too hard, or is concentrating on something for a while, the head movement side to side can start up - but it's quite rare.... Sometimes just a half dose less or more will start it.... It's pretty well covered 99% of the time though. He has DBS also.

[Bunny622023 in reply to Daisies22]

😔 That is truly awful.... it certainly takes time to get the right levels of dosing, but they also can continually change as the disease does.

[JH23]

I stopped Madopa, my Dyskinesia got a little bit better but hasn't gone completely

[Daisies22 in reply to JH23]

How did you manage to stop madopar, and more importantly how do you function at all? Were you on a very small dose?

[JH23 in reply to Daisies22]

Hi, I was diagnosed in March 23 after examination of my history and physical tests, suspect I have been suffering for 10 years prior without diagnosis (diagnosed incorrectly, with any other ailments but not Parkinsons until I saw the neurologist) , I started Madopar in May 23 and almost immediately I started getting the desire to twist my head to the right, not suspecting Madopar I continued on 25/100 x 3 per day, in August I saw my Neurologist who suspected I had Dyskinesia as my neck twisting had become quite pronounced when trying to walk forward, so to be sure it was Levodopa induced and not PD progression it was suggested I reduce and stop my medication which I have now done. The head twisting is still there but not quite as bad, now awaiting a DAT scan. I manage ok on no meds, my right arm is quite slow when I type or write and I feel very shaky with tremors in my right arm, my speech is slurred and I struggle finding words when talking, Neurologist is now awaiting results of DAT scan before taking the next step.

[Daisies22 in reply to JH23]

Hello, thank you for your reply.I think there are quite a few similarities - I too was (mis)diagnosed with various other conditions prior to the PD diagnosis. I wasted five years seeing Psychiatrists and Psychologists for extreme pain in the knees (bilateral). Five years ago I was diagnosed with Parkinson's disease but there are still a lot of questions unanswered. What surprises me is that I was offered a referral to Psychiatry again despite the fact that what is happening is clearly not psychological. I get the impression that if the Neurologist can't explain the facts they just label you a Psychiatric case, thus transferring the blame onto the patient.

My previous Neurologist told me that she felt cornered by me and for this reason I was referred to Psychiatry. I would have thought that if a Neurologist couldn't answer patient's questions and feels intimidated by the patient, perhaps it is time for the Consultant Neurologist to seek psychiatric help and not the other way round.

Thanks again for writing.

Best wishes.

[JH23 in reply to Daisies22]

Hi Daisies22, thanks for this, its sad but true that PD is difficult to Diagnose and I am sure you and I are not alone in being diagnosed many years after the first symptoms emerge, let's hope that education and awareness continues to grow and that help and support for PD sufferers and families is more readily available, take care.

[Reetpetitio]

Not sure it's quite as cut and dried as that, as a small subset of people develop dyskinesia even if they never take meds (my mother was one of them).

[gomelgo in reply to Reetpetitio]

REALLY?!?!? This is the first I am hearing of this. I would be very curious to hear if others have witnessed such a thing. Mostly because I am avoiding the meds for fear of more brain damage and especially dyskinesia@!

[Reetpetitio in reply to gomelgo]

I read that yesterday - but can't remember where nor if it was actually an authority - I think maybe it was in the Telegraph (newspaper in the UK) who did an article all about Parkinsons. I got the impression it was a really small subsection of people. My (unmedicated) mother's arm used to jerk occasionally when she was bedbound; I assume that's dyskinesia.

I think the overall message that you dramatically reduce your chances of dykinesia by avoiding meds, stands.

[gomelgo in reply to Reetpetitio]

When I think of dyksenisia, I think of those writhing movements that one's body makes all over, not just a random arm or leg kick. But I don't know much about it myself.

[Reetpetitio in reply to gomelgo]

Ah okay, that makes sense - my misunderstanding. My mother didn't have that at all.

[Bunny622023 in reply to gomelgo]

Hi Gomelgo, Dyskinesia can be as small as a 'twitch' in the hand or anywhere or as big as whole body movements. Not necessarily writhing though at all. My husbands is a slow side to side head movement. Nothing else. So many possibilities

[gomelgo in reply to Bunny622023]

Did not know that. But the way you describe it, tremor is a form of dyskinisia

[Bunny622023 in reply to gomelgo]

You are correct that Tremors are a type of Dyskinesia. Dyskinesias vs Tremors vs Dystonia there is so much reading on. I can only tell you my understanding from what I have read and how my husband reacts. Tremors are rhythmic normally and Dyskinesias are supposed to be more non-rythmic. There are 4 or maybe 5 different types of Dyskinesias, and they are quite exact as to which type a person has it seems. Dyskinesia as in (Tardive Dyskinesia) is constant with drug induced movement disorders like PD, but shouldn't be confused with PD itself. The thing is when my husband is Dyskinetic there is no jerking or writhing about it - it's rythmic - side to side slowly..... then it disappears depending on whether he has fallen asleep, meds have gone out of his system OR he stops concentrating so hard on what he is doing. Also you can get dyskinesia in the eyes where they dart around. Basically 99% of the time for him it's super controlled.

Also with respect to Dabaa below, with respect, I'm rather shocked the statement 'that you aren't dyskinetic unless you're writhing' 😱 that is pure rubbish - 100% . It makes me worried for some people what I read about what their Neuro's say to them.

[Juliegrace]

Mine stops when I am off meds.

[Dabaa]

My neurologist corrected my misunderstanding of what comprises 'dyskinesia'. If you're not writhing, it's not dyskinesia, he said.