RLS in Parkinson's patients

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Louane
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RLS in Parkinson's patients

Post by Louane »

Thanks to the RLS Foundation News and discussion board, I now know that dopamine agonists very often cause augmentation. However, I have some doubt regarding levodopa: even though it is not a dopamine agonist but still a dopaminergic treatment, can it also cause augmentation? If this is true then, it seems to me that I am destined to have RLS/augmentation for a long time, since I have no choice but to take my Parkinson’s treatment of either levodopa or a dopamine agonist or both!

stjohnh
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Re: RLS in Parkinson's patients

Post by stjohnh »

I don't know specifically about levodopa in patients with both parkinsons and RLS, but in RLS patients, levodopa causes augmentation VERY quickly, and is generally considered a no-no for daily RLS treatment. It is occasionally used for RLS as a supplemental or emergency treatment in special situations, like a very long plane trip.

Clearly this is an area that needs to be handled by one of the RLS experts, but I would think at a minimum that avoiding levodopa in favor of other Parkinson's treatment (ie, use pramiipexole for Parkinson's, treating RLS at the same time). Remember that Parkinson's and RLS are very different, even though some of the meds used are the same. Parkinson's is caused by a dopamine deficiency, and the dopamine agonists help to restore some of that deficency. RLS patients have normal dopamine levels, but thier brains don't respond normally to those, but having dopamine levels above normal (by using dopamine agonists) relieves RLS symptoms in most RLS patients.
Blessings,
Holland

badnights
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Re: RLS in Parkinson's patients

Post by badnights »

Despite what Holland says being true, it is also true that if you restrict yourself to the dopamine agonists, you run a greater risk of developing an impulse control disorder, which can easily ruin your life (and sometimes the lives of people you love). These are things to be aware of.

I have often wondered if a lot of Parkinson's patients don't have levodopa-induced WED/RLS and are unaware that it is not a part of their Parkinson's - or are unable to explain it to their doctors - or said doctors are unable to recognize the descriptions.

You should definitely see a WED/RLS expert - e.g. at one of the RLS Quality Care Centers, if you can get to one. Even if you are "doomed" to be in a state of perpetual augmentation, that can be treated effectively with opioids. There is also a new drug that has worked well in animal models to deal with augmentation, and is about to enter a small pilot study with humans. It will be some time before it's approved for regular human use, but you might be able to benefit from it. (It is discussed in the Fall 2020 issue of Nightwalkers).

That drug in my opinion might be dangerous for WED/RLS patients who don't have Parkinson's, simply because it will be regarded as a solution to augmentation and the perfect adjunct to treatment of WED/RLS with dopamine-type meds; and that may cause research into better treatments for WED/RLS to die off. Taking a medication to deal with the effects of a medication is never a good solution to a medical problem. If it's necessary, it's necessary, but I hope research does not stop there.
Beth - Wishing you a restful sleep tonight
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Louane
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Re: RLS in Parkinson's patients

Post by Louane »

Dear Holland, dear Beth,

Thank you so much for your prompt replies. My experience with dopamine agonists is not very positive even if I’m glad to say I did not develop impulse control disorders – I admit this totally terrifies me! When I was diagnosed with Parkinson’s 5 years ago, I was given pramipexole and very quickly stopped sleeping (I mean ALL night) with sudden sleep onset episodes during the day – dangerous!

So I was put on Levodop/Carbidopa instead and am I’m now at 75mg of Stalevo 5 times a day with the main side effect for now being peak dose dyskinesia. There is medication for dyskinesia, but I agree that taking a medication to deal with a medication does not seem like a good solution, so for now I deal with the it.

I was given the 2mg Neuro patch 6 months ago to deal with the electric shocks in my legs at night and only keep it from 7pm to 7am (to avoid potential side effects such as sudden sleep onset during the day). Thankfully I dont usually get the electric shocks during the day but my legs (calves especially) can become very uncomfortable if I sit too long.

But Neupro does not work very well any more and my Parkinson neurologist does not seem to be very interested in my RLS problems. I fully agree with Beth’s comments re doctor/patient misunderstandings! So I made an appointment with an RLS expert who agrees to take my case when the Covid storm lessens. Unfortunately, he doesn’t know much about my other pathologies which need to be considered when coming up with a treatment plan …. but I have taken the position that knowledge is the anecdote for fear, so I try to learn as much as I can so that I can hopefully ask the right questions. Again thank you for sharing your knowledge.

badnights
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Re: RLS in Parkinson's patients

Post by badnights »

. but I have taken the position that knowledge is the anecdote for fear, so I try to learn as much as I can so that I can hopefully ask the right questions
That's exactly the way to do it!

I wonder if you might have augmented on the Neupro already. Have you had your iron status checked, including ferritin? You might benefit from an iron infusion - see the paper in Holland's (stjohnh's) signature link or for that matter in my link, scroll down to the 2018 consensus paper on iron in RLS - or even from oral iron. If your ferritin is less than 75, definitely try oral iron unless your doctor says you're at risk of iron overload. Simply raising iron is often enough to do away with WED/RLS symptoms, and will also lower your risk of augmentation (which is of little benefit if you have already augmented).

Augmentation is more likely the higher the dose of dopamine-type med you're on, the longer you've been on it, and the lower your ferritin. When I say dopamine-type med I include dopamine agonists and levo-carbidopa.

GEtting an infusion works even better- - WED/RLS is believed to result from a combination of genetic predisposition and a deficiency of iron in the brain. It may seem odd but most doctors don't realize that different organs have different iron requirements and different iron concentrations, and the brain is trickier than other organs to get iron into because the cells that forms the walls of capillaries in the brain are gate-keepers, they work to keep harmful substances out and let select substances in, but something seems to go wrong in WED/RLS such that iron doesn't get in. GEtting an infusion is kind of a stop-gap solution but works for many of us, probably just because the more iron in the blood, the more will manage to make it past the defective gate-keeper (aka the blood-brain barrier).

If you got your iron up you might be able to lower the rotigotine, which can only help. I am worried that the rotigotine has caused augmentation already tho - - in which case you should stop it for a while, except I don't know if that's reasonable in your case. It worked at 2 mg when you first started taking it 6 months ago? Then it gradually became insufficient to stop the symptoms? Are your symptoms also starting earlier in the day? Have they spread from your legs to arms?

I suspect the best medication for the WED/RLS symptoms you're experiencing is an opioid. Did you have any WED/RLS symptoms before about 6 months ago? If not, the symptoms may have been caused by the levo-carbidopa (my theory, based on nothing much, no science that I know of), meaning, your WED/RLS symptoms were medication-induced the whole time, so giving you more of a similar medication (one that can cause augmentation - i.e. rotigotine/Neupro) is pouring gasoline on the fire.
Beth - Wishing you a restful sleep tonight
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Louane
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Re: RLS in Parkinson's patients

Post by Louane »

Hi Beth,
Let me start by correcting my error: sorry, anecdote should of course read antidote😊

Regarding iron, I have excess ferritin which comes with Gaucher Disease.

How long have I had RLS? Not sure, as for a long time I was told it was peripheral neuropathy as some of the symptoms are similar and were eased for a short period by Clonazepan, but it was definitely before I was diagnosed with Parkinson (2015) and peripheral neuropathy (2007). Carbidopa did help my RLS initially but was increased regularly as RLS symptoms got worse and each time the relief was temporary.

While I accept there are no easy answers in a case like mine where it would take a multi-disciplinary approach, I am pretty sure that as you said, taking more of a similar medicine is not the answer. But all this useful information will help me prepare for my appointment with the RLS expert – thank you!

badnights
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Re: RLS in Parkinson's patients

Post by badnights »

It sure sounds like the levo-carbidopa you needed for Parkinson's caused augmentation of pre-existing WED/RLS. That super-sucks. I hope that together you and the RLS specialist can determine a therapy that gives you back your sleep.

And I didn't even notice the mis-spell - I read it the way you meant it😊
Beth - Wishing you a restful sleep tonight
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seamayo
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Re: RLS in Parkinson's patients

Post by seamayo »

Looking for some advice for supporting husband with RLS (10 years +), Parkinson’s (2 years) was on Neupro patch for 18 months until Augmentation-weaned off 2 weeks ago, now on Gabapentin 400mg with no effect on RLS, makes him very dopey. Targin 10mg 2 tablets about 2-3 hours after Gabapentin has not helped either. He has been on Targin for past 2 years. Iron infusion 4 months ago helped for a few weeks, GP put him on oral iron after he said iron profile bloods are ok. We are wits end with sleep deprivation from RLS discomfort. Talking with GP today, hoping he will liaise with neurologist about meds. Any advice?

stjohnh
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Re: RLS in Parkinson's patients

Post by stjohnh »

seamayo wrote:
Wed Apr 21, 2021 5:42 am
. Iron infusion 4 months ago helped for a few weeks, GP put him on oral iron after he said iron profile bloods are ok. We are wits end with sleep deprivation from RLS discomfort. Talking with GP today, hoping he will liaise with neurologist about meds. Any advice?
Hi seamayo, I hope we are able to help. The fact that your husband responded to one course of IV iron, and considering the complexities of RLS in a patient with Parkinsons, IV iron is clearly the way to go. The usual RLS patient that receives IV Iron has a much shorter response to the first dose of IV Iron than subsequent doses. Your GP should have ordered more IV iron, not switched to oral iron. Oral iron just doesn't get into the blood and subequently into the brain for most RLS patients to get improvement, they need IV Iron.

The GP has misinterpreted the blood tests your husband got. The tests show ONLY that he has normal BLOOD iron levels. This does NOT mean he has normal BRAIN iron levels.

RLS is caused by BID (Brain Iron Deficiency). This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 83A240A179
BF Edit Apr 23/21 Corrected Link: https://www.sciencedirect.com/science/a ... 5717315599
BF Edit Apr 28/21 Re-corrected Link: https://reader.elsevier.com/reader/sd/p ... 83A240A179
Blessings,
Holland

badnights
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Re: RLS in Parkinson's patients

Post by badnights »

was on Neupro patch for 18 months until Augmentation-weaned off 2 weeks ago, now on Gabapentin 400mg with no effect on RLS, makes him very dopey. Targin 10mg 2 tablets about 2-3 hours after Gabapentin has not helped either. He has been on Targin for past 2 years.
Your husband could still be feeling some of the effects of augmentation and withdrawal, which will probably get better slowly over the next few months.

Meanwhile, of course, he needs help. I agree with Holland that IV iron is the way to go, and that hubby's doctor needs to learn about the differences between iron deficiency in the blood and iron deficiency in other organs particularly the brain. The paper that Holland linked to has a nice section explaining this, and it would be worthwhile for both you and your husband to read that part, and whatever other parts are relevant to his situation. That way, you understand something about what you are suggesting the doctor read. (The corrected link has been inserted into Holland's post.)

Targin comes in pills of 10mg oxycodone & 5mg naloxone (typically written 10/5), so I think that's what you mean. 10 mg oxycodone is very small for someone who is withdrawing from a dopamine agonists, so it's no wonder it does nothing for his out-of-control WED/RLS. It seems like he needs a higher dose until his symptoms settle down.

Can you explain to his doctor what is happening? Whataever parts of the following are true, modified to suit: make sure the doctor knows that the main problem is that your husband is chronically unable to sleep enough and he is so tired he can no longer function properly; his primary symptoms are the sensory abnormalities and urge to move; how these symptoms pull him up out of sleep over and over again all night; how he has to walk, move, do deep squats to make it bearable (and he's so tired he just wants to sleep, not do a workout!); how his daytime functioning has deteriorated from lack of sleep - he can no longer make decisions well, he never has energy to do anything, he never laughs anymore.

Don't assume the doctor knows these things already.

It is your doctor's obligation to try to help your husband, and if he feels unable to do so, he should refer you to someone who can. There are doctors who speciaize in WED/RLS, who have experience in treating people who have augmented and people who also have Parkinson's. You husband's doctor can refer him to someone like that - -
Talking with GP today, hoping he will liaise with neurologist about meds.
Better than liase, if there is a WED/RLS-competent one available, he could refer your husband. You don't want just any old neurologist. You want one that specializes in movement disorders, and preferably one who has experience treating refractory WED/RLS (refractory means it doesn't respond to the normal treatments). If the doctor says he will refer you to a neurologist or will consult with one, ask if he can find one that has experience treating augmented RLS (or refractory RLS). Good luck!
Beth - Wishing you a restful sleep tonight
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seamayo
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Re: RLS in Parkinson's patients

Post by seamayo »

Bad nights
Thanks for your very detailed response. Saw the GP yesterday very understanding but will only make changes per neurologist. Have given GP iron article at the visit and previously to neurologist. We are hoping they speak to each other on Monday as they missed each other’s calls Thursday/Friday. Fingers crossed.
Appreciate you sharing.

stjohnh
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Re: RLS in Parkinson's patients

Post by stjohnh »

Here is the actual corrected link to the Guidelines (my prior link was truncated and Beth's link above is just to the abstract, not the full report).

https://reader.elsevier.com/reader/sd/p ... 83A240A179
Blessings,
Holland

Sleepeasy!
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Re: RLS in Parkinson's patients

Post by Sleepeasy! »

I am new to this Board and hoping someone can weigh in on my experience/question. I was diagnosed with Parkinson's about a year ago and put on Sinemet to help with symptoms. The Sinemet has worked great however, about 6 months ago I started noticing some mild electric type pulsing in the soles of my feet at bedtime. The symptoms worsened over the next few months and also appeared sometimes during the day when the Sinemet dose was wearing off. I am also experiencing periodic burning sensations and sharp quick pains in the top of my feet and toes from time to time. My wife is a long time restless leg sufferer, but she describes symptoms very different from what I experience.
Prior to this, I never had any restless leg symptoms at any time in my 65 years. My neurologist has prescribed gabapentin which has relieved the electric pulsing so I can sleep. And I have had two IV iron infusions in the last three weeks as my ferritin levels were very low. It is early to know if the iron has helped.
My questions are the following....If you are controlling your PD symptoms with a dopamine replacement like Sinemet, how are you supposed to offset the risk of augmentation to RL symptoms? Surely this is a not uncommon issue and the need for Sinemet usually grows over time.
Do the symptoms as I describe them sound like restless legs or something else?
Is it possible to experience augmentation from a dopamine replacement, when you had no restless leg symptoms prior to taking the supplement.
Any help greatly appreciated and will educate me as I try to steer my healthcare providers.

Polar Bear
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Re: RLS in Parkinson's patients

Post by Polar Bear »

With regard to RLS, Sinemet is not a drug to be taken regularly, i.e. every day. It will almost always result in worsening/augmentation RLS symptoms... if you have indeed got RLS. Low Ferritin can be a contributing factor to RLS. Ropinerole and Pramipexole both work for Parkinson's Disease and RLS, the dose for Parkinson's being higher. However they also are likely to eventually cause augmentation of RLS. Keeping the dose low may go some way to delaying RLS augmentaton.
I'm glad the gabapentin has helped with the electric pulsing sensations.
Ask yourself, does walking about relieve the symptoms in the soles of your feet.

Burning sensations and sharp pains on the top of your feet sounds quite like neuropathy. Indeed it sounds very like my neuropathy.
I wish you well as your Iron Infusions kick in and really hope that it helps with your symptoms.
Betty
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ViewsAskew
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Re: RLS in Parkinson's patients

Post by ViewsAskew »

Welcome, Sleepeasy. I don't know the answers to your questions about augmentation in PD patients, unfortunately. Hopefully another person will.

In terms of the electrical pulsing, as Betty noted, it sounds more like neuropathy than RLS/WED.
Ann - Take what you need, leave the rest

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