Pramipexole

[bigl62]

I take C/L 3x per day. I plan to add Prampexole. Has it been help with symptoms? What improved? Any side effects? Thanks for your feedback.

[park_bear]

50% of dopamine agonist users end up with impulse control disorder over a period of 5 years. This refers to compulsive gambling, sex, eating, shopping, etc. It can be devastating and lead to loss of assets, family, and even legal trouble. Dopamine agonists can also cause orthostatic hypotension which can be disabling. Is levodopa not serving your purposes?

[Mechjack in reply to park_bear]

I can attest to the compulsive side effects. They are also difficult to get off of.

[DEAT]

I would thoroughly research before you start. Find out as much as you can.

I didn't do my homework And I can't get off it .

As you will see from the many replies this is not a good drug. Please be careful.

[Parkkis]

I was similar situation 2 months back C/L 4x per day with wearing off challenge. Neurologist suggested to add pramipexole. I tried with 0.52mg dosage, no positive impact. Couple of times tremendous tremors, no other side effects. Dosage was quite low but I decided to stop it after reading all possible side effects.

[Charaf1959]

J'ai arrêté à cause d'une ho qui m'a causé une chute terrible

[PD_Investigator]

I started taking pramipexole at the same time I began levodopa, after two years on only anticholinergics. Pramipexole really helped me with one specific symptom—I wasn’t able to lift my right arm (which is my affected side), and levodopa alone never had the same effect on that.

However, I honestly wouldn’t recommend it. I’ve experienced many side effects. If I take more than 0.88 mg per day, I start having social anxiety and trouble swallowing. I also had compulsive shopping behavior—I'd spend entire nights buying useless things from Chinese websites without even realizing it until I lowered the dose. I also feel like it creates something similar to superstition—you start believing things that aren’t real, though I’m not completely sure about that part.

Personally, I would consider trying a MAO-B inhibitor or a COMT inhibitor before going for a dopamine agonist.

[RonB1]

I am trying to get off Pramipexole. It works well for Restless Leg Syndrome, however it caused a lot of weight gain for me, as well as swollen ankles. Pramipexole created a desire to eat too much.

[Freiburg61]

I struggle with some side effects: I gain weight, i fall asleep for seconds and it’s a wonder not falling from my chair . I saw shadows beside me and spider in one night. I have compulsive shopping , edema in my legs, I was tired all the , but can’t sleep at night… And more. The highest dose was 1.52 mg - reduce it to 1.05 mg. I try to reduce it to 0,88 , it doesn’t work.. but i will try again. If somebody has an idea how to I would appreciate to hear.

[PD_Investigator in reply to Freiburg61]

I made the reductions from half a pill to half a pill of 0.18 mg every 3 weeks, I mean, every 3 weeks I went down 0.09 mg. At the same time I was increasing the vitamin D, which I have discovered that it helps me a lot to prolong the on of the levodopa. I currently take 0.88mg of pramipexole, 500mg of levodopa and 8000 IU of vitamin D, and I have more hours of ON than when I was taking 1.05mg of pramipexole with the same 500 mg of levodopa.

[Freiburg61 in reply to PD_Investigator]

Thank you so much for sharing your experience with VIT D. I realize I’ve „lost’ Vit D over the time.

last time I try to reduce Pramipexol from 1,05 to 0,88 mg my mood changed in getting sad and sensitive. So I got back to 1,05 mg. I will try it again with the help of VitD.

[PD_Investigator in reply to Freiburg61]

I hope it works for you, good luck! The vitamin D I take is from Aavalabs. In my case, I have realized that I have to make all the changes very slowly, because otherwise I don't see the results.

[gaga1958]

what symptom are you hoping to improve?

[bigl62 in reply to gaga1958]

Stone face and flat personality

[katfarr49]

I had taken pram but it made me drowsy and I drove for my work. They switched me to extended release and it took away the drowsiness but after the first couple years my insurance would not pay for any of it. It is very dufficult to stop taking the extended release form. I have been paying out of pocket but I wish they had told me that there is a withdrawal because I can't continue to pay for it. I just wanted you to know that extended release is not a very good option. I have more problems controlling my tremors without it but I am trying to eat foods that support dopamine production (or whatever you want to call it). Some days I don't have tremors and some days I do. Some Drs. will increase the cl to compensate but it's not the same. And other than the drowsiness, I had no side effects.

[park_bear in reply to katfarr49]

I take it you are referring to extended release Pramipexole rather than extended release carbidopa levodopa.

[katfarr49 in reply to park_bear]

Yes, that's what I meant.

[flyboypiper]

I took it when I was first diagnosed with Parkinson's.. I got off of it after a month because I read the warning labels about falling to sleep while you're in the midst of doing something without any warning. And I. still drive. I saw an article on website that said that one woman fell asleep twice while driving and crashed her car. She'd lost her driver's license as a result of it. It's a hazardous drug in my book and I found no beneficial effects from it whatsoever. It made me very drowsy. It had no effect on my tremors whatsoever.

[DeanGreen]

Hi Big,

I took pramipexole for a few years. Some of the bad side effects I experienced are swollen ankles and angina in my left arm when I walked up a hill. These symptoms made me concerned about cardiac issues. It also made me sleepy during the day. I fell asleep at an intersection and bumped the car in front of me. When I gradually reduced the dose to zero, the symptoms disappeared. I told my neurologist about the swollen ankles and angina, but she had not heard of any cardiac issues with pramipexole. PD symptoms and drug side effects are quite varied for each person, so you may have a totally different experience. Good luck.

[Armyman]

I was on it briefly and went off it because I was images out of the corner of my eye

[Sailorboy1]

I took it for a year when first diagnosed with PD. It was quite good at treating the motor symptoms initially, but after about 8 months the effectiveness was waning. I did not experience side effects. At my 12 months follow-up the specialist switched me to Sinemet 125mg 3 x daily. I had an immediate improvement. I was advised by the specialist that it was safe to continue with the Pramipexole as well as Sinemet, but after about two months ceased taking Pramipexole. A few weeks later I had the bright idea of taking Pramipexole again to see if it would help get me through “off” periods. I took the full dose. It did not occur to me to titrate the dose. Very bad effect! After about 2 hours I was feeling unwell and took frequent readings of my BP and HR. My BP steadily reduced to 73/40, and my HR to 42. Normal for me is 115/72, and HR about 55 (I exercise a lot). I felt very sick and almost didn’t make it to my bed for a lie down. Just before getting there I started to feel a little better so went back to check BP and HR again. Both were rising steadily; I was on the mend🙂. The next day at the medical practice I was interviewed by a GP (not my usual one, who was away), and it was determined that the cause of my acute illness was failure to titrate the Pramipexole.

I have never taken Pramipexole since. The takeaway for me from this experience was to be scrupulous with medications - dosage, titration, timing etc.

[PersiaK59]

Hi,I have found Pramipexole wonderful.I’m on 4.5 mg ( the highest dose). I was diagnosed in 2020 . Didn’t start medication till a year later. Started on rasagaline,shortly after that I started pramipexole which went up from the lowest dose to the highest in just over a year. I’ve been on the 4.5 mg since October 2022.

Unfortunately my neurologist started levodopa much later ,that started in March 2023 & it helped in a miraculous way.my right arm which hadn’t swung in 3 years started swinging after 3 days of levodopa.the tremor down the whole right side stopped with levodopa.

Pramipexole helped greatly with stiffness,back pain,restless legs,reduced the tremor,reduced fatigue ( I was not on levodopa So I know these symptoms were reduced by the increasing levels of Pramipexole.)

I continue on levodopa100mg carbidopa 25 mg , 3 times a day,my rasagaline and Pramipexole 4.5 mg all continue at the same rate since levodopa started March 2023.

I was a real mess (no energy to do anything,slow walk,back pain,bad tremor,)the couple of months before starting levodopa & was annoyed I had to wait so long to start it.have since changed to a new neurologist who hasn’t changed my meds.

As for side effects from Pramipexole,I have had very few. I feel I eat much more than I should& feel obsessed now about food but my focusing on eating healthy ( I still eat to much) but I haven’t gained weight in years ( I feel I’m a few kilos over what I should be but I haven’t gained). I felt wonky in the mornings for the 1st 2 years,a bit like having a hangover.I never reported it as I desperately wanted to continue the medication especially as I wasn’t on levodopa.The wonkiness went away after 2 years and it was only for a few hrs in the morning and could have been due to the Parkinson’s and I was anemic and didn’t know at first.

I had a swollen foot from time to time 18 months ago and have been checked out by a cardiologist recently with no concerns.

I definitely don’t get sleepy in the day. I don’t drive.

I have participated in a clinical trial that went for a year and this required me to every few months not take Rasagaline or Pramipexole for 36 hrs and no levodopa for 12 hrs & they would test me doing all those Parkinson’s scores etc, my Parkinson’s all returned,I felt like absolute shit,tremor ,slow walk etc, it was hard getting in on bus to the trial and a reminder that my Parkinson’s had not gone away..I feel so well on these meds and am doing better than most people I meet with Parkinson’s( I meet a lot).

I’m extremely grateful for these medications and to live in Australia where they are cheap and I also get myPD warrior paid for my the government as well as other things. I’m lucky to live in such a supportive country .

Obviously I still get tired & need to have a rest during the day ( unfortunately I can’t sleep like I used to be able when I was young),stiffness but no where near before I started the meds ,my tremor can sometimes return when my levodopa is due.I still get the odd bladder issue and slow walk at night.my friends can not understand my fears for the future and act like I don’t have Parkinson’s as I look so good .

But like all of us I’m scared for the future and try to enjoy my good health now.

I’m 59.

,

[park_bear in reply to PersiaK59]

I question the ethics and the safety of a clinical trial that requires you to go without meds for up to 36 hours.