Agonist versus Levadopa: From what I've... - Cure Parkinson's

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Agonist versus Levadopa

S70AWD profile image
37 Replies

From what I've been reading, it seems that taking a dopamine agonist versus levadopa is a "one or the other" choice. My neurologist has me taking 8 mg ropinirole hcl er once a day (at nighttime) and 25/100 caridopa/levadopa three times a day (breakfast, lunch and dinner). Is this combination of an agonis and levadopa a common treatment for pd? I am 67 years old, diagnosed almost 4 years ago. I have only been on the c/l for a few weeks.

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S70AWD
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37 Replies
NanCyclist profile image
NanCyclist

I have exactly the same regimen only with 4.5 tabs of C/L. I'm 9.5 years into diagnosis and am 71.

ruff1 profile image
ruff1 in reply toNanCyclist

My husband started on requip about two years after diagnosis, titrating eventually up to 20 mg and after about 5 years stekevo was introduced, nearly 11 years later he's on 20 mg requip at 5am 1 mg asilect and then 5 x 125 stelevo tgroughout the day is managing well 😀😀

Lisl profile image
Lisl

I used to be on a regime of Madopar and pramipexole but after less than two years had developed severe dyskinesias, as well as numerous side effects from the dopamine agonist (pramipexole). The pramipexole was stopped and after DBS the Madopar dose was reduced. I'm now taking Stalevo 125 four times per day. I had young onset Parkinson's which, I believe, might make one more susceptible to dyskinesias. It is not uncommon to prescribe both l-dopa and a dopamine agonist. However, as I understand it, if dyskinesias develop (either drug can cause them) then the results can be exponential rather than additive. Mine were certainly reduced when the agonist was stopped and then ceased after DBS (partly because it enabled reduction of the L-Dopa dose). I hope this helps.

superjanet profile image
superjanet

My husband started on Madopar and then after a few years Mirapexin was added. He was on both for quite a few years - the Mirapexin helped with mobility. He had to come off it at the end of 2012 so that he could start taking medication for dementia and became very immobile. Fortunately we have found homeopathic remedies to keep with mobility instead.

rhyspeace12 profile image
rhyspeace12 in reply tosuperjanet

what are the homeopathic remedies?

superjanet profile image
superjanet in reply torhyspeace12

There have been various ones over the years, and the one which works best for him has been worked out by his homeopath based on his medical history. He started on Mercury, so that might be with a try, but it's really better to consult a qualified homeopath.

Tmarsella profile image
Tmarsella in reply tosuperjanet

What homeopathic remedies specifically? Please.

superjanet profile image
superjanet in reply toTmarsella

See my reply above.

Bazillion profile image
Bazillion

I am 68 and been diagnosed almost 6 years.Was put on Azelect 1 mg and Mirapexin ER ( started on minimum dose and over 6 years increased to 3.12 mg)

In Dec dr added Madopar 100/25.

Reluctant to start it so decided to take just one in the morning about 9am.at the moment i find that's all I need .By 10 when I'm playing tennis or having a bike ride or power walking I'm fine. Seems to keep me going most of the day and by the time it's wearing off I'm sedentary so being a bit slow doesn't bother me.

I've also started CBD an hour before bed. This has made a vast difference.Im sleeping at least 7 hrs mostly undisturbebed occasionaly need to get up for pee but soon go back to sleep.Unexplained pain rarely troublesome and I've got so much more get up and go.

I believe sleep is a great healer and wish I'd had the courage to try CBD before. The short time I've been taking it has made the biggest difference to my PD .

Lynne1946 profile image
Lynne1946 in reply toBazillion

How much CBD are you taking?

Bazillion profile image
Bazillion in reply toLynne1946

It's a low dose CBD Brothers 50mg 25% tried 2 but one is fine

AmyLindy profile image
AmyLindy in reply toBazillion

With THC or without?

Bazillion profile image
Bazillion in reply toAmyLindy

Without !

AmyLindy profile image
AmyLindy in reply toBazillion

What is your status now- 2 y later w CBD?

Bazillion profile image
Bazillion in reply toAmyLindy

Hi , well quite a lot has happened . After about 5 months on Madopar 100/25 TDS I started getting Dystonia/ dyskinesia/ so I had to take 100/25 first thing then 50/12.5 @12 3 6 and9 . That worked ok for about a year but with disease progression i needed to increase to 12,2.30.5.00 7.30 and 10.. that worked for a good while but have recently increased again to 100/25 at 8am. 50/12.5 at 1130 1,30 3.30 5.30 7.30 and 9.30 (that’s still only 400 mg a day)It’s a lot better but not completely . The strange thing is that having the last dose at 9.30 I have been sleeping soooo much better haven’t needed cbd.According to my fit bit My sleep score average is between 70 and80 and I average 6 hrs sleep . It’s a pain having to do it this way but rather that than the waving and swaying and the angry face look!( that worries my wife more than me ) but sometimes it’s so contorted I find it hard to speak!

AmyLindy profile image
AmyLindy in reply toBazillion

funny thing, then... in the end, medication wins? So CBD had its’ place & time for you . Wow,what a cycle you’ve been through. Love the detailed history-fascinating and helpful for many. Thanks a Bazillion!

S70AWD profile image
S70AWD in reply toBazillion

What is CBD?

Bazillion profile image
Bazillion in reply toS70AWD

cannabidiol

en.m.wikipedia.org/wiki/Can...

isis6361 profile image
isis6361

Yes. There are many combinations. Agonists on its own or with ldopa. Comt inhibitors and others including the rotigotine patch.

Josiedub profile image
Josiedub

My experience with an agonist was a disaster. Gave away a lot of money. My thinking stopped almost, fell asleep all the time , blurred speech. A nightmare. And it didnot help a bit against my tremor. Now I stopped with the pramipexol I am not without problems but the severe problems I had taking this agonist disappeared. A very dangerous drug to my opinion.

christyd65 profile image
christyd65

I am on 24mg ropinerole only going on 2 yrs. I couldn't tolerate even the lowest c/l dose so just the agonist for me which so far has been working ok once i got through the unpleasant side effects of increasing ropinerole

S70AWD profile image
S70AWD in reply tochristyd65

I'm still trying to deal with the nausea I get with 8 mg ropinerole. The 25/100 C/L doesn't make me sick but it seems to make me very sleepy. Does anyone else have this same experience?

christyd65 profile image
christyd65 in reply toS70AWD

I had horrible nausea too and lost about 30lbs.Each time it was time to increase i couldn't imagine how i would be able to take it but strange as it sounds...the nausea actually subsided around 14 mg and never returned. Im glad i didnt give up because it was about 16mg that i began seeing symptom improvement

S70AWD profile image
S70AWD in reply tochristyd65

Do you take anything else besides the agonist?

christyd65 profile image
christyd65 in reply toS70AWD

Not right now. Im just now approaching 2 yrs diagnosis. When i started c/l it made me so spacey i couldn't tolerate it so right now just ropinerole

Chicafromchitown profile image
Chicafromchitown in reply toS70AWD

Hi S70AWD

After 9 yrs with ropinerole 12mg my Neuro lowered to 8mg because due to a broken ankle I wasn't able to walk, so when I did after a few months I've noticed that after taking ropinerole my leg with the fracture was getting stiffer and now I can barley walk, after almost imploring to my Neuro she lowered to 8mg and added the 25/100 C/L did the 25/100 helped if so, in what symptoms? Thanks

p-p- profile image
p-p-

I am not a medical person but a patient like you. As I understand, both are taken together. Carbidopa /levadopa is the usual dosage taken by lots of patients. (not carRidopa ) In my humble opinion the 25/100 carbidopa/levadopa works well for 3 hours. Sincerely, Pam

S70AWD profile image
S70AWD

The caridopa/levadopa is the dopamine. The ropinirole is the dopamine agonist. Should both be taken as a treatment, or is an either-or issue?

p-oui profile image
p-oui

Curious what symptoms caused you to add c/l ?

Bazillion profile image
Bazillion in reply top-oui

After 6 years on Premipexole i was experiencing side effects : shortness of breath low blood pressure ,syncope,feeling tired ,so decided to reduce dose.That helped but Started dragging Lt foot ,speech got quieter and generally PD not so good.

Specialist suggested adding Madopar 25/100 3 times a day,

Thought I would try just one in the morning and see how I went.

To be honest after an hour I forgot I had PD and it lasts well into the afternoon.

As by then I'm pretty sedentary, decided didn't need to take any and up to now been fine on just one in the morning

S70AWD profile image
S70AWD in reply top-oui

My neurologist said she thought it was time.

Price69-pat_ profile image
Price69-pat_

Hi! It is Pat. I take 75mg of stalevo (c/l) and .75 of mirapex (agonist) each four times a day. Diskenesias are pretty much gone. I am diagnosed seven years now and am age 69. I take mirapex one hour after I take stalevo. Seems to be the right combination right now for me. I still believe for some people the answer is the right combination of drugs and when to take them.

Lisl profile image
Lisl

According to research both l-dopa and agonists can cause dyskinesias - worse together

S70AWD profile image
S70AWD in reply toLisl

That's what I heard that caused me concern. I'll have to e-mail my doctor about this issue.

Lisl profile image
Lisl in reply toS70AWD

As I understand it from reading the more recent research, if you have young onset PD and are female you're more likely to develop dyskinesias. Your doctor is probably aware of research findings and will no doubt try to optimise your drug doses. I guess dyskinesias are always a risk with PD and it's a question of balancing the benefits against side effects of any drug. All the best.

S70AWD profile image
S70AWD in reply toLisl

TY

ellaleila987 profile image
ellaleila987

I take Pramipexole 0.375 mg at night and Carbidopa/livodopa (25/100) 4 times a day. I am getting on ok provided I do exercise about half an hour daily. I feel exercise is as important as medication to cope with Parkinson's.

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