Wondering if dad has RLS instead of PD (or both?). Any RLS indicators here?

[daughter-Advocate]

Hi new to learning about RLS. My heart goes out to everyone dealing with this.

I'm reading a lot of comments about experiencing Augmentation from Mirapex/Dopamine Agonists or that if dopamine therapy doesn't work on you, you may not have PD. I've been wondering if my dad has RLS or something else instead of PD... (Or both?) -- sry for the long post ahead.

Reason being was he started on Carbidopa/Levodopa (Sinemet) 25/100 mg in combination with Mirapex 0.125, 2x a day as his regimen. Helped with moving faster and more precise for 2 weeks. But when both doses increased to 3x a day = hallucination side effect, taken for 5 weeks.

Doc reduced and eventully dx'd Mirapex as an expected textbook decision thinking it's the cause of hallucinations but while on Sinemet alone (S), pain immediately increased, hallucinations still around, legs swelling, slow movements again, (is this augmentation? This was only 2 months in). Now another 2 months later on just Sinemet, still same. When Mirapex is in the picture, even at 1-2x/day - pain decreases, swelling decreases, better movements. So in hindsight, Mirapex is actually what's working for dad instead. I suspect S to be the hallucination culprit so we're trying to tirtrate its dose right now and def keeping Mirapex.

Other suspected indicators —

On the daily dad tends to want to move his legs a lot, like he can't sit still after having a habit of standing so much throughout his life...and starts pacing around but that'll increase his stiffness due to bad posture from standing/walking so long = more pain for him. Or he'll pace around in the middle of the night if he can't fall abck asleep after a bathroom break. Sometimes he'll feel what he calls is numbness in his arms and legs upon standing up/walking after getting out of bed. (Is that augmentation?) The pain he experiences after Sinemet only shows up on his back and neck which I believe are posture pain or could be tightness side effects of unnecessary added dopamine. All surgeons say he should never get back surgery at all and that he has a good back for his age of 72.

Now that we realize S may not be working for him at least not alone, would it be safe to say he doesn't need the synthetic dopamine and is misdiagnosed with PD? Or because of his Bradykinesia symptom (which is typically a result from the tightness and pain of his back) and that Mirapex is working, PD is an acceptable diagnosis bc it can be used as Monotherapy for PD?

As we're tracking the side effects/how his body is reacting to the meds, I think he should take Mirapex 4x a day to space out the time more evenly especially so that the last one can stay in his system a little longer to help with morning aches. Is that the right idea? Is 4x/day 0.125mg each (0.5mg daily) too much for someone newly diagnosed on PD or potential RLS? Would a Sinemet (2x a day) + Mirapex (4x a day) regimen sound like a reasonable ratio? Something else that might be helpful that I found was that there's an extended release version!? If the nighttime dose can be that instead then win win right?

Back to augmentation - would love some clarity if my dad is experiencing/experienced Augmentation and if there's any indication to check for RLS. What other signs should I be on the look out for?

Thanks!

[SueJohnson]

All I can do is give you the definition of augmentation and RLS.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. And it is this last part that may apply to Parkinson's.

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,

[daughter-Advocate in reply to SueJohnson]

thanks Sue. I will keep an eye out for any of those behaviors and bring up Rasagiline to the doc.

[Madlegs1]

Including augmentation, your dad is suffering severe mirapex poisoning.He seems to be on a huge dose from what I can gather. Is he getting 1.5 mg per day? Max dose for RLS is 0.25mg. if he's being treated for Parkinson's, then that is a different story and I just don't have the experience to comment on that.

Good luck.

[daughter-Advocate in reply to Madlegs1]

Oh Good to know.

He’s not getting 1.5mg per day. Each pill is 0.125mg. Sry for the confusion.

The original prescription was 2x/day = 0.25mg total per day. When it was 3x/day = 0.375mg total per day.

[Munroist]

The RLS-UK website has some good information about RLS symptoms, diagnosis and augmentation.

rls-uk.org/symptoms-diagnosis

[daughter-Advocate in reply to Munroist]

thank you!

[Sleepless1950]

I am so sorry to hear about your Dad.

I have had RLS for 45 years.

I was on Mirapex for many years and it was a God send! After a few years I started noticing that I was shopping a lot. I also started sleepwalking.

I started doing a lot of strange things and my RLS was getting worse. It was interfering with my life every day any night! I talked to my pharmacist who helped me slowly reduce my Mirapex and st the same time my pharmacist told me to prescribe Hydromorph 4.5 mg once at night.

I started the hydromorph while weaning off the Mirapex. I have now been on the Hydromorph for many years now and I sometimes think about going back on the Mirapex but then I remember the hell I went through while taking it and coming off it.

I also take hydromorph contin 4 mg which is long lasting.

I hope this has been of some help to you.

Understanding oh so well’

Sleepless 1950

[daughter-Advocate in reply to Sleepless1950]

Do you have any side effects from Hydromorphone?

[discgolfrules]

Hello, I can share my personal experience. Have RLS for 30 years. Have PD, was diagnosed as early onset. I have been on ropinirole, a dopamine agonist for 15 years. Mirapex Did not work for my symptoms, made me very ill. Through trying many things, the ropinirole is what works for now. Augmentation is a thing, ruling out augmentation is another. I do not sleep without the dopamine agonist. My brain will not let my body sleep without the dopamine agonist. Iy will send a surge down my spine, then shoot out through out my body and extremities. This build up and release is what the ropinirole takes away for a short period of time. Medical Marijuana helps tremendously with both daytime pain relief and muscle soreness. Medical Marijuana also helps with the nausea from medication and actually getting to and maintaining sleep. Not trying to be the Marijuana guy, but was on opiates for the same thing for a short time and prefer the natural medication. I didn't have any hallucinations until I was on 4 mg for a prolonged time, like 2 years I think. Back down to 3 mg, which is just as effective, but fewer and more managable side effects.

[daughter-Advocate in reply to discgolfrules]

im so glad you've found a regimen that works for you! i'm actually considering medical marijuana as an alternative. doesn't hurt to learn more about the benefits and what it actually does for the condition. how did you start that process?

did you keep track how long it took for the hallucinations/side effects became fewer when you went back down to 3mg?

[discgolfrules in reply to daughter-Advocate]

The side effects were from the ropinirole, dopamine agonist, not the medical marijuanna. With the ropinirole, the side effects were intense, honestly they are still present, just managable now. It is difficult to say how long with the ropinirole because they are still present. I would say after dropping down .25 mg's every 2 weeks. May be 3 months before a noticeable diffence. Dropped down to 2 mg's, but was not effective enogh to wear I could sleep and get adequate rest. So I have found balance at 3 mg's. As for the medical marijuanna, my neurologist got me started with the process. I have found that THCa works best, all medicine minimal stoniness effect. The THC Delta 9 has the hallucagetic properties, it is not as effective but works. I use the Indica strain for body soreness and pain relief. The sativa strain helps with being nasues from my medication. After reading my post I see I was not clear and the end of the paragraph, my apologies. As far as medical marijuanna? Side effects may include excessive snacking, coffee indulgence, and an increase in situational humor and an inability to control it, lol.

[Beckonwood]

I took Mirapex for a number of years and it worked for some time. But I found that after five or six years I was taking more and not getting the benefit for my RLS. I also put on considerable weight for which I wasn't happy about. Eventually I found that percocet worked and now only take that. My family doctor won't prescribe percocet fo me because he is afraid of loosing his license. I don't understand that but I got to Relievus and get my prescription there. I take 5 mg. of percocet and then cut it into and start in the late afternoon taking a half every hour. I recently started taking iron pills every other day and believe it is helping also