I was diagnosed two years ago and only just started Azilect a couple of months ago. To tell the truth, I only started it because my neuro kept pressuring me to, and I admit that in a moment of weakness I finally took it to please him! Don't know what I was thinking!
Anyway, Azilect did nothing for me and now he wants me to start on Pramipexole. I read that Pramipexole has a reputation of causing hallucinations and other nasties.
By way of context, a year ago I started getting hypnopompic hallucinations (they only happen in the first few seconds after waking) and there was some concern about LBD. The hallucinations have subsided and I was taken off "LBD watch" as it were.
My question is, have any of you guys had experience with Pramipexole? And is it worth taking despite the side efffects? My gut feeling is to resist taking it. My neurologist thinks I'm an idiot anyway, so nothing lost there. Besides, I can live with my symptoms for now seeing as they are mostly tremors which do not affect me very much. Yet.
I appreciate any insights you might have.
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LeuraPark
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A growing number of studies report that damage to the nucleus basalis is linked with hallucinations in PD. Thus, acetylcholine and cholinergic deficit are implicated. Medical literature indicates that some meds and some herbs can augment cholinergic tone. HUpd has numerous posts regarding hallucinations.
I'm neither an MD nor a PhD. Start by searching HU]pd.
Pramipexole is dopamine agonist. Dopamine agonists are extremely dangerous drugs and should be a last resort not a first resort for Parkinson's. Dopamine agonists have been shown to cause orthostatic hypotension in one third of patients taking the very first dose. They also commonly cause impulse control disorders - compulsive gambling, sex, eating and shopping. Some people have lost everything as result of the compulsive gambling.
There is nothing wrong with the various forms of time release levodopa - Sinemet CR, Rytary, etc. They have been falsely accused of hastening the start of dyskinesias but this has been disproven.
I guess I'm only just learning how complicated communicating about PD can be.
I'm sure my neurologist wants to do the best he can for me, we're both on the same page there. Problem is, I suspect that what he thinks is the best thing for me does not coincide with what I think.
I tell him that my tremors do not interfere with my quality of life and I can live with it for a while. But hallucinations, falling asleep suddenly, addictions or delusions would and on balance I would like to stay away from medication that may cause that until I really cannot avoid it.
I guess I'm a terrible communicator because he prescribed a dopamine agonist anyway. So either dopamine agonists are not that bad and they have merely been given a bad rap or he thinks they are so beneficial that it is worth the risk. Or maybe I am at the stage where I really cannot avoid it. and he's just not telling me.
I get the feeling that I'm about to climb onto a treadmill of medication and I will never be able to get off. Did any of you experience that? Is that the inconvenient truth they don't tell you about PD? Or are the risks of bad side effects so minimal that I am worrying for nothing?
Medical doctors are propagandized to believe dopamine agonists are no different than levodopa as far as adverse effects but that is not the case. I can support every statement I have made with valid references to the medical literature and will do so if you need me to.
I personally suffered complete impairment of my postural blood pressure control system as a result of taking 15 daily doses of a dopamine agonist at minimum dosage. As result I was disabled for a month - unable to stand without fainting. Fortunately I recovered after I quit.
You are not a terrible communicator - the problem is on his end. I would tell him I am not interested in dopamine agonists, please prescribe me a levodopa formulation. If he refuses use mucuna or find a different MD.
Prescription Parkinson's meds are for symptomatic relief only (with the possible exception of Azilect). Nothing wrong with that, but if your quality of life is good without medication this is a good time to look into nonprescription interventions. Regular vigorous exercise is a must. I have started high-dose thiamine and it seems to be helping. Qigong has been very helpful for me.
Seems to me that MDs are not the only ones propagandized. Patients are not supposed to question their specialists either.
I am at the point of giving up meds and relying on exercise. That's not much of a leap for me seeing I am new to PD and only have tremors. I can' t guarantee I'm going to be as quick to stop meds if I have some more difficult symptoms. But as you say, it's a good time to look at nonprescription interventions.
I exercise almost 2 hours a day, including Qigong and high intensity cycling. I definitely notice when I don't exercise.
I was diagnosed in 11/17 after a DaT scan and was given Azilect as a mono treatment. Four refills later and I feel just as I did last September before anyone had ever suggested I had Parkinson's. That suits me fine. I assume it's doing its job. Perhaps you might give Azilect a little more time.
Azilect worked like a dream for me when I was first dxed but takes a while. Then I went onto Requip which had similarly good effects. No side effects at all. I believe 10/15% of PWP are but too much exposure of these negatives has given the agonists a worse name than they might deserve? The only drug that has totally underwhelmed me and not done what it claims on the label is Levadopa bizzarely.
All of what Park Bear said re dopamine agonists, plus my former neurologist (he retired darn it) said doctors were made to feel bad if they didn't prescribe agonists but he felt they were not good overall. My feeling is they are over prescribed and once a PWP starts on them most docs just add on without looking at what's really working.
It’s diffeent for everyone and personal experiences of others, while interesting, may not be helpful to your version of PD. Agonist side effects are thought to be under-reported. Moot point whether you are predisposed to obsessive behaviour. Age, gender, symptoms, hormones, genetics, exercise and diet all play a part. Even when you think you’re up to date on latest thinking, new research comes along with a different view.
Exercise, diet and gut health can only be a good start. Do you have any non motor symptoms? If it’s just a tremor and it doesn’t bother you much take a view. It’s your body and mind... and btw other neurologists are available. Xx
I think it’s important to believe in your meds. There are a lot of nasty side affects with these meds. If it’s just tremors non pharmaceutical Mucuna Pruriens is worth considering and asking Neuro about.
What makes it difficult to believe in the meds is the knowledge that no matter who we ask, what we read, how much we learn, we still don't know how it will affect us unless we take the meds. And the thought that we can simply stop taking it is not without its conflicting reports either.
I must assume that my neuro has my best interest at heart and he must believe the potential benefits are worth taking the risk. But truth is, he doesn't know either. I appreciate that and I wish he would put the pros and cons to me and leave the decision for me to make. I'm lucky in that I can get pros and cons input from this forum. It would be way more difficult without your informed feedback.
I only have tremors and visual hallucinations so far and I don't think the risk is worth taking.
I was started on Azilect and Pramipexole at onset of diagnosis 4 years ago. Only symptom was slight hand tremor. My Neuro said they were neuroprotective. I think the jury is still out on that. I have not progressed much since then...slightly more tremor, very slight gait change. How do I know if I would have been worse without them? I do exercise. I have had no side effects from them. Everyone is different.
Like you LeuraPark i was dx 2 yrs ago and like you i want to resist prescrip meds as long as poss- i can tick along with my ailments. The doctors dont get this when isaid i didnt want to take pills he offered me a patch- he thought i not like swallowing pils!
I have begun taking Mannitol- a sugar substitute and it has relieved my apathy and my 'happy' mood is back and dexterity in arm and hand has improved too. I am happy with this at moment. This forum is brilliant for advice.
I took Pramipexole for a year, starting 3 months after I was diagnosed. I gained 15 lbs due to compulsive eating, and I had to stop driving due to attacks of sleepiness - very dangerous! I switched doctors, and switched to C/L. I lost the weight, and can drive again.
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