I'm new here but have been reading a lot of posts and find it very helpful. Great to find this community that support each other.
I wanted to tell about my mother’s condition to see if anyone has any helpful tips or insights. My mum has been diagnosed with Parkinson recently and has started taking Co-careldopa in May 21. After 2-3 weeks since she started the medication she started to have very strong episodes of RLS that would keep her awake all night. She has had RLS in the past but it used to be very very rare for it to happen and it wouldn’t last for more than a couple of hours.
Her Neurologist suggested to start reducing the Co-careldopa to see if her RLS improved but it actually got even worse so she kept the dosage. To understand if she was Dopa responsive for her Parkinson treatment the Doctor gradually increased Co-careldopa from 125 mg (3 times a day) to 187.5g (4 times a day). At the same time, to treat her RLS the Doctor increased her night Gabapentin dosage from 100m mg to 600mg. It did work very well for 3 weeks but the past few days her RLS started to creep in slowly and last 3 nights she did not sleep at all because of it.
My impression is that Co-careldopa has triggered the condition but cutting it down just worsen the symptoms. Still navigating my way through it but any advices are very welcome.
Thanks,
Fernando
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Fernando80
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A listed side effect of Co-careldopa is "Uncontrollable jerky movements, which can happen after taking co-careldopa long-term. You should let your doctor know about these as soon as possible". Hopefully one of the knowledgeable people on here will be able to give you advice specific to RLS
I’m not familiar with co-careldopa so not able to help particularly but if I were in your mother’s shows I wouldn’t want to take any drug that induced rls.
Generally, She should get her serum ferritin checked because low serum ferritin (anything below 100) can worsen rls. I don’t know if there are any counter-indications for Parkinson’s sufferers in raising iron levels.
You are probably aware that the dopamine agonist family of drugs such as pramipexole and ropinerole can be helpful in treating rls but they do unfortunately result in the condition worsening considerably after a while in a process known as augmentation. I presume there is some relation between these drugs and co-careldopa given the name ...
Thanks for your comments involuntarydancer . Co-careldopa is a mixture of carbidopa and levodopa used on the Parkinson treatment. In broad terms both RLS and Parkinson Disease are related to dopamine - hence many PD patients also developing RLS.She has checked her iron levels and they are ok for now but she is taking supplements for that also.
Ropinerole is her Neurologist next suggestion but I am concerned about Augmentation and Impulsive Control Disorder - apparently a common side effect of Ropinerole.
Based on this article I would take a look at my profile page and give the ferrous bis-glycinate a one-time shot and see if it provides relief that night for your mother. If it does provide relief then great, just get your mother's doctor's permission. Remember, it has to be tried an hour before bedtime, on an empty stomach, and away from all other drugs and supplements. If I were to take it in the morning, or even afternoon, it would do nothing for my night time RLS. Or if I were to take a form called ferrous sulfate it would do nothing for my RLS.
You see, everyone's serum iron (NOT ferritin) drops precipitously at night. We with RLS, and our anemic brains, really rely on that free-floating, unbound iron in our blood to keep our pathetic dopamine transport system chugging along. When that iron drops at night (supposedly lowest at midnight), the non-RLS world is fine, however, we are not.
The uptake of iron by the brain is a minute by minute event. To me this explains why we can feel fine at 9:01pm but then at 9:02pm all hell can break loose. Name one other disease like that...a disease that for the most part manifests at night only? If you look up the definition of insanity in an encyclopedia you should see RLS there.
And actually, RLS is quite different from Parkinson's in that we with RLS have plenty of dopamine, more than the average person, whereas Parkinson's patients are short on dopamine. Everyone's dopamine levels drop at night as well as iron. There might be a connection with the drop in iron since I read that iron is required for the synthesis of dopamine. Then I also read iron is required to make our dopamine receptors more "receptive" to that dopamine and just bigger and better in general. So the uptake of iron (and it’s availability) is completely and utterly crucial to that whole dopamine parade which ultimately is what quiets our arms and legs - everyone’s arms and legs (known as the peripheral nervous system). Such a shame that the RLS brain has problems storing iron in certain key areas, whereas the non-RLS world does not.
Anyways, if the iron doesn't provide relief that night for your mother then I would still talk to her doctor about raising her ferritin levels in general. The best way to do this would be to take the ferrous bisglycinate every other night. No iron infusions - not if it were my mother. You indicated she is taking iron supplements, but unless they're a highly bioavailable form they are unlikely doing her much good.
If she is destined for a DA then I would only allow Neupro and only 2mg. It gets rave reviews here, but remember, first the ferrous bisglycinate an hour before bed:
Then if you feel like trying a little unproven, mad science for your mother there's the below article. I would definitely take this if it were me, or my mother, but that's because Parkinson's can be progressive and some type of action, other than palliative, is called for, I believe. It should be taken in the morning because it seems it can trigger symptoms of RLS for a few hours after taking, especially if you're taking a highly bioavailable form. If you're not taking a bioavailable form, then only a ridiculously small amount of it gets absorbed into the bloodstream, like .38%. The rest is headed straight for your intestines. Which means this form is less likely to trigger symptoms of RLS and more likely to achieve the goal stated in the below article:
Oh, one more thing, I recommend that your mother get most of her calories during the day and to try to stop eating about 4 hours before bedtime, at least. Mother Nature intended for us to work and eat with the sun and to sleep and fast at night. The closer we get to her intent the better.
in reply to
Here’s an article about the role of iron and how lack thereof in certain areas of the brain can lead to numerous conditions including Parkinson’s and ADHD. psychologytoday.com/us/blog...
It isimportant that your mother changes her diet to lower carbs like bread, refined sugars and fruit juice, to lower her insulin levels, and also add some vitamins as explained in this video. youtube.com/watch?v=30khOXU...
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