Parkinson's and RLS

[Traderwonko]

Hello fellow sufferers, I've got a specific question that I'm wondering if anybody else in here has ever had to consider:

I am a long time sufferer of rls who has progressed into augmentation using DAs and was able to almost completely get off them replacing them with Gabapentin and low dose opiates. As if that wasn't enough, I was diagnosed with early stage of Parkinson's disease a couple of years ago. Now I'm facing a dilemma which I'm not able to tackle with my doctor because she only deals with Parkinson's disease in her practice and is humble enough to admit that she is not competent regarding the treatment of RLS beyond what I've told her.

Now, augmenting on RLS under dopamine agonist treatment, the way forward is pretty simple: get off of the remaining dopamine agonist, treat the RLS with pregabalin or Gabapentin and if absolutely necessary, Opiates. Do not ever use dopamine agonist again.

Unfortunately, the way forward with treating my Parkinson's disease is equally simple: use some mao inhibitors and as soon as the symptoms increase due to disease progression, use ever increasing amounts of L-dopa or dopamine agonists in patch form and with dose is much higher than usual feasible for RLS. Since for Parkinson's disease, dopamine is the absolute gold standard, I cannot convey the thought to my doc that I'm really not happy with using any kind of dopamine/ dopamine agonist again. I'm taking as little as I can convince her, but she wants to increase the Neupro dose on every visit, roughly about every 6 months. Other than that, she's a good doctor, being open to reading materials like the current Mayo clinic treatment guidelines and she is very much fine with me being knowledgeable about my condition and wanting to be in charge of my own treatment.

Does any one of you knowledgeable people here have an idea how I could approach this situation?

I fear there is no other possibility for treating my PD than dopamine, because at least with PD it's obvious that there needs to be more dopamine in the brain. Still, I am extremely wary of taking more rotigotine. Since my PD Symptoms are already increasing with disease progress, I cannot go without treatment against it or I will probably lose the ability to drive a car and work, which I really need since I haven't accumulated enough finances to get through a possibly long retirement phase. So, I am really hoping that my fear is wrong and there is another way to treat this double whammy of conditions. And if I can find such wisdom anywhere, the place is probably here...

[SueJohnson]

Gabapentin is used to improve the rigidity, bradykinesia, and tremor of Parkinsonism. You should ask your doctor about Rasagiline (Azilect). Rasagiline is used for Parkinson's and has been used to treat RLS. It is not a dopamine agonist."The hope is that Rasagiline, because it prolongs the effect of existing dopamine, instead of producing more, will not come with adverse side effects,"

Intense exercise can slow the progression of Parkinson's but will exacerbate RLS, however I would think that would be worthwhile since Parkinson's is a more serious disease.

If Rasagiline is not enough it can be used with levodopa/carbidopa. Although not a DA, levodopa/carbidopa does act like one. Again your Parkinson's is the more serious disease.

[Jumpey]

I would email Dr.Mark Buchfuhrer and take his expert advice to your neurologist. Huge good luck.

[Islay9]

I don’t know if you’re in the UK, but there is a company that has created a low cost device for PD symptoms primarily but also other issues, that may be of interest.

It’s called the Beech Band and was invented by Carl Beech who is a PD sufferer himself.

Prototypes have been out for a while and the first shipment is meant to be arriving next month. But the videos look encouraging.

I don’t know anything about PD, and have no affiliation, I found out about this after someone on here mentioned it and I was curious about whether it would work for RLS.

Anyway, might be worth a look?

beechband.com

FB page Beech Band Ltd

[Zenawarrior73 in reply to Islay9]

Was just going to mention beech band too well done Islay I’ve had a personal meeting with Carl Beech and initial trials show it to be very effective and a drug free option

[Sydney75]

My husband has PD and RLS. It is a tough dilemna. Right now his RLS is adequately controlled although he is on 2mg Neupro patch for PD which is an DA. He also takes Rytary for PD and rather than gabapentin he takes 600mg of the timed released version Horizant. He was on gabaptentin for pain for a couple years before diagnosis, did not really help much. Tried a MAO but he was not early enought] in diagnosis. His PD has progressed over the five years since diagnosis. He is not tremor dominant, rather more motor and pain. Prior to diagnosis he would state my whole body hurts and I can't move. Mild RLS presented at night before diagnosis. His RLS could be related to periodic limb movement and sometimes reminds me of myoclonic jerks. A Datscan confirmed he had PD at initial diagnosis.

Because of unrelated complex back problems he cannot exercise enough. Exercise is very essential in PD and the only non-medication that slows progression. It is better to exercise in AM than PM. We are trying to slowly reduce Neupro patch to 1mg, what is strange is that if he misses the patch 1 day his legs will really begin to jerk, which means there is no delay to symptom onset and the medication does not leave system that quickly, so I wonder if it is intrinsically related to his PD. All this medication makes him tired and a higher dose of Horizant makes him forgetful.

I agree with staying away from the Neupro, you may eventually have to start carbidopa/levodopa. Everyone progresses differently. This message board has many PD folks who try alternative methods.

Good luck.

-Syd

[StanSliwa]

where are you located?? If in USA east coast, I may be able to help by refering you to an internationally recognized RLS clinic in Pittsburgh, PA.