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Parkinson's Movement
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Did anyone start treatment taking a dopamine agonist?

I was diagnosed in March with PD at age 48, and at that time my doctor prescribed Rasagiline. I have noticed no symptom improvements after 10 weeks taking it, but in fairness the doctor said only some patients will notice any minor symptom relief. He also mentioned that some think it provides a neuroprotective benefit, but that claim seems uncertain as well.

I have a follow-up visit schedule for next week, and I suspect he will suggest getting me started with taking a dopamine agonist (Pramipexole or ropinirole). I read a bit about these, and some of the side affects seem a bit scary, but it seems that a dopamine agonist is often first prescribed to younger patients to save the ledopova for later.

I'm curious to hear from those who have taken a dopamine agonist as a first course of treatment. How was the symptom relief and how long did you take it before it lost effectiveness and moved on to ledopova? Especially interested to hear from those who are roughly the same age as me (48).

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I was prescribed Azilect (rasagiline) on diagnosis. It was said that it might slow PD progression. At the time I felt it improved my mood. This was my only medication for three years, and then Half Sinemet was added. So far so good.

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Good news! Current status?

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Hello Amy - now six years since diagnosis and still taking 1 tablet of Rasagilene (1mg) daily. Also taking 5 tablets of Half Sinemet CR 25/100mg daily. I take the first tablet about an hour before I get up in the morning, then about four hourly through the day till bedtime.

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Hi my husband was diagnosed at the age of 49 nearly 12 years ago, for 18 months he wasn’t in medication then the first drug was Ropinerole, he started on a low dose, he felt a bit nauseous to start, but nibbling on crystallised ginger helped . Eventually over a couple of years he was on 20mg. He didn’t and still doesn’t have any if the nasty side effects- except orange pee! They certainly helped , he is non tremor dominant, eventually he was put in Stelevo and then Asilect was added in . He worked for 8 years after diagnosis as a head teacher but since retirement has improved as he has been able to reduce stress, exercise every day either golf, gym, Pilates or running and eat a better diet. We have just introduced thiamine HCL 4g a day which is def helping with sleep and getting in and out of bed . 😀😀

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I was dagnosed at 56 and prescribed aziclet which didn’t make any discernible difference. About 18 months later, after resisting for some time because of my fear of side effects, I was prescribed ropinirole. I was very cautious and had both my husband and best friend look out for signs of compulsive behaviour, which is a side effect. My symptoms improved and I’ve not developed compulsive behaviour. We are all individuals but for me, ropinirole works. I take 8mg a day, and have taken it for a couple of years. I also exercise (PD Warrior) and take a number of supplements.

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I am 57, but symptoms started at 48. I tried both of those agonists early on, about 3-4 years in, with very little benefit and definite side effects. I stopped taking it when I started on levodopa because the levodopa was so effective. I subsequently saw a different neurologist who told me doctors were made to feel badly if they did not prescribe agonists, but he thought the benefits did not outweigh the deficits.

Just now I read a post by a long time member here who is taking a break to deal with a compulsive gambling problem (most likely) brought on by agonists. They are not good options.

You might try high dose thiamine (search it and Dr. Constantini) and find some relief.

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Why doctors were made to feel badly if they did not prescribe agonists. Here is a Medscape article that completely ignores the orthostatic hypotension risk of agonists and uses the now-debunked dyskinesia scare against levodopa:

medscape.com/viewarticle/43...

"It is not an overstatement to say that patients with Parkinson's symptoms will be less than optimally managed over the course of their illness if these agonists are not added to their regimen."

Propaganda.

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Hi

I was started on agonists and Im still on them 10 years later. I find them good for movement. When I have tried reducing the amount i take in 24 hrs I get so bad I cant walk,just shuffle.

I like them, but now they are only a part of treatment with other meds Neuros are less keen to prescribe agonists now following this report comparing the starter drugs of a large group of pwp. Also some neuros have been sued over compulsive behaviours.

thelancet.com/journals/lanc...

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Amidst the doom and gloom bear in mind that approx 17% of PWP suffer the infamous side effects. Ergo you have an 83% of being one of the lucky ones. Not bad oddd?

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Impulse control disorder is not the only adverse effect. Orthostatic hypotension shows up in 1/3 of patients on their very first dose of a dopamine agonist.

Per prior reference from Hikoi: " Very small but persistent benefits are shown for patient-rated mobility scores when treatment is initiated with levodopa compared with levodopa-sparing therapy. MAOBI as initial levodopa-sparing therapy was at least as effective as dopamine agonists"

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Not all doctors are good about communicating about all of the side-effects; and not all side-effects are reported, especially ones that induce shame, so 17% may be lower than the actual number.

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47 started on Ropinerole but had to come off them since giving me headaches and were not helping. Went on senimet which is working for me.

Be well

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i dont know why peope keep taking azilect pills they are expensive and i tried them for 5 years i just give them up i was still the same after i give them up.they did nothing.

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I was diagnosed 2 years ago at age 48. I started Rasagiline about 3 months ago. I'm sticking with this though it makes no obvious difference. I told my neurologist that I don't want to go on agonists for the reported side effects. Though I guess all drugs have side effects so perhaps I should rethink.

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My advice would be to try agonists, ask somebody close to keep an eye on you for behavioural changes and if there are any concerns then you come off them? A small dose shouldn’t be problematic re. Coming off I’d have thought. But they were and remain a decent drug for me.

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I was diagnosed about five years ago. I was prescribed Azilect to slow progression. It did little for my actual symptoms but that is not why I took it. I took it to slow progression. I have had no noticeable progression so, for certain, I am going to keep taking it.

I also take carbo/levodopa 3 times a day to control my symptoms and rarely have any significant off times.

With regular exercise, the 3rd and most important medication, I live a complete and essentially normal life including working full time.

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Last year, when I was diagnosed with PD at 50, I was prescribed rasagiline and ropinirole. The latter did work with modest benefit, the former, in my opinion, had no effect but side effects. Hence I stopped taking rasagiline, and did not have any worsening. Later on, amantadine was added, with slight incremental benefit.

I think supplements and thiamine are doing much more favor to me than the drugs.

By the way, some supplements such as green tea extract and grape seed extract do have a MAOB inhibitor activity, which again renders rasagiline useless.

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In the aforementioned study, the discontinuation rate was much higher for non-levodopa therapies:

"179 (28%) of 632 patients allocated dopamine agonists and 104 (23%) of 460 patients allocated MAOBI discontinued allocated treatment because of side-effects compared with 11 (2%) of 528 patients allocated levodopa (p<0·0001)".

I suspect the real rates could even be higher.

This is definitely not a good measure of safety or tolerability.

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Age of onset, progression, blood pressure history, size, and gender, gastrointestinal health, and diet need to be considered when making the choice to add new meds. The efficacy and absorption of the drugs are affected by these. Know how the meds are excreted.

Read up on Orthostatic hypotension before making any decisions. It can by triggered by the disease or a variety of meds. Before you add layers of meds, know what your own layers are.

The disease is a puzzle. The meds can either help or hurt. Know what the indicators of advanced stage are. Know what the first signs of orthostatic hypertension are.

Expect to make decisions like this: Rigidity is frequently listed in side effects of drugs. Rigidity affects blood pressure. If you are taking an MAO-B inhibitor (like Azilect or the generic Rasagiline) avoiding high tyramine foods is recommended. Bananas are listed as high tyramine foods. If you develop Orthostatic Hypotension (because of the disease, the drugs used to treat the disease, or just luck of the draw), bananas are recommended as part of the diet. It is hard to differentiate between a tyramine sensitive increase in blood pressure or the Orthostatic Hypotension reaction. A banana may either help you or hurt you. Do you eat the banana?

I was diagnosed at age 51, but knew long before that that something was wrong. I had several good years being treated with a dopamine agonist. I wish I had used some of those years to learn the vocabulary you need to deal with advanced parkinsons issues.

Denial can only take you so far. Make your decisions based on your body. It may be an elderly body in disguise, in which case you need lower doses and are more sensitive to

Medications and their side effects. Compare side effects of drugs side by side. Know which drugs are “contraindicated”. Know what side effects to look for.

I though research was overwhelming when I was feeling reallly good. Middle of the night desperate research for immediate answer is much worse. An informed choice is crucial.

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