Dopamine Agonists and Risky Behaviour - Cure Parkinson's
Dopamine Agonists and Risky Behaviour
A fair warning to everyone on agonists.
I've been taking Pramipexole for a year and have definitely noticed changes in my behavior, especially whenever I've exceeded a dosage of 0.88 mg per day. In my case, it wasn't increased sexual impulses, but rather an urge to shop compulsively—mostly small, inexpensive items from places like AliExpress and similar websites. Additionally, when surpassing this dose, my insomnia became unbearable. Other than that, I haven't noticed any other unusual behaviors. Reducing the dosage below that threshold made these symptoms disappear completely. My neurologist had warned me from the beginning about the potential for such compulsive behaviors, so I made sure my partner was also aware of these possible side effects.
It's also very important to highlight that medications like these should never be stopped abruptly. Like other dopaminergic treatments, suddenly discontinuing them can lead to serious conditions, such as neuroleptic malignant syndrome. If anyone reading this notices compulsive behaviors or other medication-related issues and is considering stopping treatment, it is crucial to first discuss it with their neurologist to ensure it is done safely and under proper medical supervision.
Personally, I initially started taking Pramipexole out of desperation, without thoroughly researching the medication when my neurologist first prescribed it. If I had known then what I know now, perhaps I would have made a different choice. However, I must acknowledge that at the beginning of my symptoms, I had significant problems with my arm—I could barely move it. Sinemet didn't help me at that time, but Pramipexole did.
Hi PD_Investigator, my neurologist suggested to take Pramipexole in addition to Levodopa. I have now taken 0.52mg during 10 days and I have not noticed any positive results. After reading about serious side effects I decided to stop taking this drug. Unfortunately my next available time for doctor would take more than month. I'm not eager to wait so long time, I'm now thinking how can I safely stop usage by myself. My understanding is that 0.52 mg is rather low dosage and only 10 days taken so hopefully it's safe to cut down from 0.52 to 0.26 for one week and then stop. Let's see.
The highest dose I’ve taken was 1.04 mg, meaning 4 tablets of 0.26 mg extended-release (ER). When I started noticing side effects, I had already been on that dose for about 15-20 days. I then abruptly reduced by 1 tablet (0.26 mg), and what I experienced was terrible brain fog—I couldn’t concentrate on anything for several days. It felt like everything was in slow motion, and I was even slower.
Since I was still experiencing side effects at 3 x 0.26 mg ER, my neurologist suggested gradually switching from extended-release to immediate-release (IR) because she said some patients respond better to IR. Her plan was for me to reach 0.70 mg in the morning and 0.70 mg in the afternoon, all as immediate-release. But that’s when I started reading about the more severe side effects, and I decided to gradually lower my dose on my own.
To reduce the dose, I’ve done a lot of trial and error, and it has taken me several months to reach my current dosage: 2 x 0.26 mg ER + 1 x 0.18 mg IR in the morning and 0.5 x 0.18 mg IR in the afternoon, totaling 0.79 mg. I’ve tried reducing further, but I can’t because it makes me feel extremely slow, and the levodopa seems to be less effective—probably because I’ve been taking it for a long time. On the other hand, if I exceed 0.88 mg, the side effects return. There’s a very fine line between having and not having side effects, so even small dose adjustments can make a big difference.
Each person reacts differently. If you don’t have the possibility to see your neurologist, you should monitor any changes you notice. If something feels off, seek help or consider increasing the dose again. I don’t know what the effects of stopping it completely would be.
Scary, what a poison. Have to be carefull.
That’s frightening. I’m surprised it hasn’t been eliminated. Thanks for sharing!
"Patients prescribed drugs for movement disorders - including restless leg syndrome (RLS) - say doctors did not warn them about serious side effects that led them to seek out risky sexual behaviour."
This is malpractice and should result in disciplinary action and liability to the patient. There is a member of this forum who lost everything due to compulsive gambling as a result of not being warned about impulse control disorder. Moreover, the doctor instructed him not to look up adverse effects.
I totally agree....however sometimes I think that 'recollections may vary'. Apparently we can only retain about three pieces of information during a consultation, we tend to focus on the good aspects of a treatment and play down the 'unusual side effects' and often don't read the leaflet where all the warnings are made explicit.
My neurologist warned me that I could develop impulsive behavior, but she didn’t tell me how severe the effects could be. If she had explained exactly what it was, I probably wouldn’t have taken it. What she told me was something like, “Well, let your close ones know that you might have some unusual behavior regarding shopping and gambling, and that’s about it.” She said something like, “If that happens, we’ll try another medication.” I had no idea it could be this serious.
I take Opicapone and haven't noticed any extreme behaviour (so far!), except perhaps excessive phone scrolling.The capsules do seem to help even out my PD symptoms, so I will stick with them for now. 🤞
Not got PD. I gather excessive phone scrolling is a sign of the times, as society at large is doing it to get a dopamine fix🙁
I had to sign a disclaimer before being prescribed rotigotine patches, but I don't like the odd feeling I get from them. After almost 2 years I think it time to try coming off very slowly. Consultant wants to give me amantadine instead. I don't know which is better or worse for me but I won't take another D agonist
I was advised to stay away from the dopamine agonist for these reasons unless it's a last choice.
I have been on rotigotine patch (Neupro) for 10 years and Rytary for 8. Previous to that I was on C/L IR. My diagnosis was 13 years ago.
The patch is 4 mg per day. I have no idea how that compares to 0.88 and 0.52 mg of Pramipexole others have posted here. If anyone know, I'd welcome the information.
I was prescribed by a neurologist who overprescribed meds and who I haven't seen in 7 years. I'd like to come off but my current neurologist thinks I should stay on it. I know I have to wean slowly. Has anyone done this? I'd welcome your experiences as to how many mg you weaned off of over what period of time, and if you had to increase any other meds to compensate?
No compulsive behaviors I am aware of, although I do get fixated on tasks to the detriment of other tasks.
My story similar to yours. On Ropinerole approximately 8 yrs with highest dosage 6mg extended release .
Switched from Carbidopa/Levodopa to Rytary 2020. Currently prescribed 10, 39.5/145 capsules er day. I take only 7 or 8. I feel that Rytary “stacks” by the end of the day as I feel slow, pain and tremors are worse.
Back to Ropinerole, I’ve been titrating down from 6mg for 2 years! MDS started at 4mg and I severely reacted…fell twice in a week, felt addled and sick. Went back to 6 for 2 months then started very gradual reduction. Currently at 0.5mg morning and 0.5mg night.
Also taking Amantadine (100mg 3X day). Have just very gradually reduced to 2Xday. Dyskinesia under control.
At 16 yrs since diagnosis my symptoms are much worse the past yr. Difficulty dressing, bathing, preparing meals etc. I’m initiating the process for DBS. Understanding that continued meds will probably be required. At 69 yrs old, I’d be happy to stop tremors, bradykinesia, stiffness and dystonia.
Almost forgot to add that on Ropinerole I found myself over shopping on my hobbies…yarn, fabric etc. not all bad because I made over 50 quilts that I donated to home for women and children who had been removed from trafficking . Tremors are limiting sewing and knitting.
I strongly believe that Dr.s often over prescribe and we too often do not question the effects of all of these drugs. Cost vs benefit analyses required!
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