C/L induced dyskinesia - severe wrist pain

[gdineshnathan]

My mom has severe wrist pain due to Carbidopa Levdopa induced dyskinesia (25/100 x 3 times per day). Otherwise she is fine without any tremor. She says after C/L intake the pain is unbearable in her wrist. Infact, we can see inflammation (redness) in the wrist area. Any suggestions as how the hand tremor could be controlled? I have seen her hand curl up a lot involuntarily just an hour after C/L.

In the night, after her C/L dose at 7 pm, she eats dinner around 8pm and immediately takes Ropinirole 0.25mg, this immediately stops her tremor and thus the pain goes low. Wondering what others do to control pain - especially wrist

Thank you.

[park_bear]

You say this is dyskinesia – involuntary movement – but by the description it sounds more like dystonia – involuntary muscle tightness. In any case, consider using extended release/controlled-release version of C/L rather than the immediate release. It is less prone to causing this problem because it provides a more even plasma level of levodopa, with a lower peak value. Detail here: healthunlocked.com/cure-par...

[gdineshnathan in reply to park_bear]

I see. Does, C/L cause dystonia ? My mom says that the pain is almost gone once the tremor has passed.

[park_bear in reply to gdineshnathan]

Yes, it can. For more detail see here: healthunlocked.com/cure-par...

[gdineshnathan in reply to park_bear]

Thank you. We will try CR C/L. Also the post that you linked gave us a very good perspective. Apart from CR, is there anything else that could be done to relieve C/L induced dystonia pain in the wrist? Thanks

[park_bear in reply to gdineshnathan]

It is possible that treatments to reduce levodopa -induced dyskinesia may also work for levodopa -induced dystonia but that is mere speculation on my part. By far the simplest and most straightforward remedy is to reduce peak levodopa levels.

[LAJ12345]

My husband was having rigidity about 90 minutes after taking madopar which was getting so bad he was almost choking. If her pain is about 90 minutes after taking levodopa it could be the dose is too strong. He cut back the amount he is taking to the 50/12.5 tablets and it has gone away. If she is taking the 25/100 tablets you could try reducing the amount by slowly shaving a bit off the side reducing over time to a half dose. Or cutting in half and taking twice as often which I know is a bit of a pain. But then if the pain goes away you’ll know it’s because the dose was too high at the peak.

Out of interest does this get worse with every dose of the day? Each dose builds on the tail of the previous dose so by the end of the day the peak is much higher than the first dose of the day. This sketch illustrates what I mean.

Peaks increasing with each dose in a day

[gdineshnathan in reply to LAJ12345]

Thanks for your detailed reply. yes, she says the pain is worse in the night during the tremor.

[LAJ12345 in reply to gdineshnathan]

is she taking a tablet she can cut of l/c or a capsule of long life? If it is a tablet that can be cut you could try only giving her half of the last one of the day.

[gdineshnathan in reply to LAJ12345]

Its a tablet. Sure, we can shave a portion out and try to see if that helps. Is this advisable over a CR C/L? Also, do you take CR C/L?

[LAJ12345 in reply to gdineshnathan]

My husband has PD. I’m just the support team. He went through a very scary time in the middle of the year when they upped his dose of levodopa and swapped him to the controlled release capsules. It nearly killed him. The first few days it seemed good then he rapidly got much worse to the point he went from pretty mobile to completely disabled. He couldn’t even pee by himself without my help. The evenings were the worst. That’s when I started researching the blood plasma levels of levodopa and plotting his doses against his symptoms and came up with that sketch I put above. I found at 90 minutes he had severe rigidity to the point it was painful and constricting his throat. Then at 3 1/2 hours he began to uncontrollably shake and freeze. I found out the underlying natural dopamine cycle is at a low at midday and high at mid night. So the first dose of the morning was ok as levels were dropping but by evening he had his natural cycle making some dopamine plus the tail of all these doses of the day building up to a much high blood plasma level (I think).

The symptoms got worse as the day went on and he was very agitated in the evenings and would not sit still and we had to go in and out of the house , around the park every night . He also got insomnia and constipation. Then I had to start locking him in at night as he wanted to kill himself he was so agitated. The doctors said it was sundowning and a sign of worsening condition. But one weekend when there were no medical staff available and he was struggling to breathe with the choking I decided to put him back on his original lower dose of instant release madopar and he came back to his previous self within about a week. His insomnia went away and his constipation too.

That’s why I would start with reducing the last dose of the day to see if it helps. She might just be on way too much for what she needs.

By the way this experience has been reported a lot on this site so there are a lot of people being over medicated. The doctors respond by adding more medications to treat drug induced side effects. For him they added sleeping tablets which made him extremely confused in the night and constipation meds which he doesn’t need now.

[LAJ12345 in reply to LAJ12345]

This is a list of supplements he takes out of interest. I am not sure if all are necessary or helpful but he is doing ok at the moment so I’m reluctant to jinx it! But of course different people will be short of different things and have different genetic variations so what’s helpful for one may not be for others.

List of supplements for anyone interested.

[gdineshnathan in reply to LAJ12345]

Thanks a lot for your detailed response! Much appreciated.

[LAJ12345 in reply to gdineshnathan]

Have you had any success in improving things? Let us know if decreasing medication or any of the other suggestions helped at all. Thanks.

[Hikoi]

i think you need to dicuss with your neuro. Your mum is on a low dose of carb lev. (I got a sore wrist which I think is arthritic, exacerbated by pd). It may be that ropinerole suits her better or you could try halfing the carb lev and giving more frquently. Dont half long acting meds though.

[Summertime1212]

Jn

[macmiddle]

The above suggestions sound sensible. I like infrared laser for pain points on my body. It assists greatly and I use at home every second day or so for a few minutes to relieve pain...it is easy to use and certified for parkinsons also.

[gdineshnathan in reply to macmiddle]

Thanks for your reply. Which one do you use for the infra red laser?

[macmiddle in reply to gdineshnathan]

The PDCare Laser by Symbyx (symbyxbiome.com). They are only one backed by research. Small trial but more underway. See BMC Neurology Journal around July 2021. The symbyx website has a lot of customer testimonials and they publish all customer reviews good and not so good (it doesn't work for some).