1. < Parkinson's Disease
Profile picture for sparkyr70

Has anyone suffered from dyskinesia or dystonia - toes curl under

Posted by sparkyr70 @sparkyr70, Jan 20, 2025

I'm on Rytary 3 X's daily. I also use INBRIJA inhaler 3 to 5 times a day. I have researched the symptoms of Dyskinesia and Dystonia. I have tried adjusting my meds and after many months I think this side effect is cause by INBRIJA. My left foot toes curl under as follows, Not the big toe, toe next to it curls a bit but toes 3, 4, 5 are really curled. Tremors accompany the toes curling. I'm forced to walk on the outside of my foot. Because the side of my foot is carrying my weight, it causes my ankle to swell and is painful. Has anyone experienced this? If yes how do you manage this?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Profile picture for sparkyr70
sparkyr70 | @sparkyr70 | Sep 24 2:18pm
In reply to @hopeful33250 "I see that you discontinued one of your PD meds to address the curling of your..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

I see that you discontinued one of your PD meds to address the curling of your toes. @sparkyr70. Was this recommended by your doctor? It looks like it has helped. Did you start any new medication to replace the one that you discontinued?

Jump to this post

@hopeful33250
The medicine is INBRIJA . It is a inhaler. I have not talked to my Neurologist. I have appointment in a few days. Before I stopped, I researched how to stop. Which was all about weaning. I was on two meds, Rytary Extended Carbidopa Levodopa. The foot rollover/curled toes appeared after a couple of years. I researched and found out about dystonia and its affects.
Since both of my meds have carpa/levodopa I knew that their was no way I could stop all the Meds. I knew the INBRIJA was the culprit. toes curl /left rollover. Nearly stopped. however the curled toes did not recover. Unfortunately in the last couple month the side affect is increasing. I have some tremors appearing on my ankle, foot & left hand.

My neurologist might not be happy withe me. But it did work for many months.
Currently I'm in PT. our goal is to strengthen the surrounding muscles.

REPLY
2 replies
Profile picture for sparkyr70
sparkyr70 | @sparkyr70 | Sep 25 12:38pm
In reply to @sparkyr70 "@hopeful33250 The medicine is INBRIJA . It is a inhaler. I have not talked to my..." + (show)
Profile picture for sparkyr70 @sparkyr70

@hopeful33250
The medicine is INBRIJA . It is a inhaler. I have not talked to my Neurologist. I have appointment in a few days. Before I stopped, I researched how to stop. Which was all about weaning. I was on two meds, Rytary Extended Carbidopa Levodopa. The foot rollover/curled toes appeared after a couple of years. I researched and found out about dystonia and its affects.
Since both of my meds have carpa/levodopa I knew that their was no way I could stop all the Meds. I knew the INBRIJA was the culprit. toes curl /left rollover. Nearly stopped. however the curled toes did not recover. Unfortunately in the last couple month the side affect is increasing. I have some tremors appearing on my ankle, foot & left hand.

My neurologist might not be happy withe me. But it did work for many months.
Currently I'm in PT. our goal is to strengthen the surrounding muscles.

Jump to this post

@sparkyr70
Thank you for the HUGS!

REPLY
Profile picture for goatgirl28
goatgirl28 | @goatgirl28 | Sep 25 5:38pm

Interesting. My Neuro dr said I should only take Inbrija in an emergency. We are all different.

REPLY
1 reply
Profile picture for nova11723
nova11723 | @nova11723 | Sep 25 8:34pm
In reply to @goatgirl28 "Interesting. My Neuro dr said I should only take Inbrija in an emergency. We are all..." + (show)
Profile picture for goatgirl28 @goatgirl28

Interesting. My Neuro dr said I should only take Inbrija in an emergency. We are all different.

Jump to this post

@goatgirl28 What time of day did you suffer from this and how long did it last? I just had a bout of it two days ago in the morning, and it seemed to be due to being a bit run down and stressed. I have never taken Inbrija, so that is not the culprit for me. Luckily, it doens't last past my first dosage.

REPLY
1 reply
Profile picture for goatgirl28
goatgirl28 | @goatgirl28 | Sep 26 7:22am
In reply to @nova11723 "@goatgirl28 What time of day did you suffer from this and how long did it last?..." + (show)
Profile picture for nova11723 @nova11723

@goatgirl28 What time of day did you suffer from this and how long did it last? I just had a bout of it two days ago in the morning, and it seemed to be due to being a bit run down and stressed. I have never taken Inbrija, so that is not the culprit for me. Luckily, it doens't last past my first dosage.

Jump to this post

@nova11723 Never had my toes curl but when it is the 3rd straight day of intense tremors, I give in and take it. Because it is inhaled, it works fairly quickly.

REPLY
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 27 8:34pm
In reply to @sparkyr70 "@hopeful33250 The medicine is INBRIJA . It is a inhaler. I have not talked to my..." + (show)
Profile picture for sparkyr70 @sparkyr70

@hopeful33250
The medicine is INBRIJA . It is a inhaler. I have not talked to my Neurologist. I have appointment in a few days. Before I stopped, I researched how to stop. Which was all about weaning. I was on two meds, Rytary Extended Carbidopa Levodopa. The foot rollover/curled toes appeared after a couple of years. I researched and found out about dystonia and its affects.
Since both of my meds have carpa/levodopa I knew that their was no way I could stop all the Meds. I knew the INBRIJA was the culprit. toes curl /left rollover. Nearly stopped. however the curled toes did not recover. Unfortunately in the last couple month the side affect is increasing. I have some tremors appearing on my ankle, foot & left hand.

My neurologist might not be happy withe me. But it did work for many months.
Currently I'm in PT. our goal is to strengthen the surrounding muscles.

Jump to this post

Congratulations on your physical therapy, @sparkyr70. That is great. I'd be interested to hear what your neurologist suggests to you about the curled toes. Will you post again?

REPLY
Please sign in or register to post a reply.