More side effects

[LAM-16304]

3 weeks after PD diagnosis and starting C/L I started taking pramipexole, .25mg. 3 times a day. The side effects are cotton mouth, increased nausea, constipation, headache, ocd, UTI symptoms (not resolved with antibiotics), and inability to control lips & tongue. These added to other conditions already presenting have not allowed me to leave the house. If you have knowledge of ways to minimize the impact of any of them please enlighten me.

[park_bear]

For most people, just after diagnosis, C/L is sufficient. Personally, it is still sufficient for me 10 years after. Why are you adding a dopamine agonist so soon? Adverse effects such as you have cited are not unusual.

[fnedorez70 in reply to park_bear]

My personal experience with the Pramipexole Be very careful driving . I understand your that in Australia it is illegal to operate the vehicle while on this medication

The reason you can fall asleep without any warning any time.

[LAM-16304 in reply to park_bear]

All the knowledge I'V gained from information on Health unlocked is staggering. Before this everything I came to know about PD was from Wikipedia, my PCP, research and the movie (Still, Michael J. Fox's life) Dizziness suddenly showed up last night during one of my insomnia periods. My world was spinning and walking was a dangerous venture. I'm proceeding with these medications on advice from a neurologist I'V only seen twice. He is 72 years old and old school and probably not as up to date as a younger doctor might be. But has a lot of experience. The problem is it took 3 months to get an appointment with him and 8 months to schedule an appointment with Barrows Institute chasing the possibility of DBS.

[DEAT]

I hate pramipexol. I can't seem to get off it.I haven't found another drug that works for me and I didn't have side effects.I take it for restless legs syndrome .

After 9 mths I started overeating and online shopping.

Ive got it almost under control. But I hate having to take it.

I agree with Park Bear.

[MarionP]

Sounds like you cannot handle it & need to get off it. On to the next thing. If you want to test the idea that you cannot handle it, then what you do is what scientists call a "reversal." You stop and see what happens. If the side effects go away, then that's your answer. There are many other things to try and this is a journey.

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DEAT is correct. Correct in that the longer you are on it the harder it will be to get off of it without serious side effects and consequences from trying to get off of it. The answer is to get off of it as soon as possible in order to avoid having even more horrible things happen to you than already have. .

.

Humans are addiction making machines. It's not really the chemical that is addictive, it is rather your own body that is addictive and it will addict and adapt. Then to quit the chemical, just like with cigarettes for example, you will have to re-adapt and that may take a very long time and come at very high personal cost. You have to choose and learn fast. As I said this is a journey, not a sprint. Once you make a decision then you have to move. When your system fully adapts to the chemical, it's going to be damn hard to get away from it. You have to make a choice and the choice seems to be this medication is not for you. End of story, move on to the next ideas. Being rigid and staying with it will come at a cost. So choose.

[JayPwP in reply to MarionP]

It should not be stopped just like that, it should be weaned off very very slowly, else patient may suffer Neuroleptic Malignant Syndrome.

I have suffered 3 days of cold sweats, fever and fainting episodes in 2021 due to stopping Pramipex cold turkey. I did not know the NMS risk then. Later my Neurologist told me.

[MarionP in reply to JayPwP]

Well that's a good warning in any case, but I think in this situation you are backward and I'm basing that on professional experience. If he was only on it for a short period, which it sounded like from his original statement, and sounded not quite like an emergency, then even as an emergency as I have observed myself and in psychiatric emergency rooms, they take it off in a controlled, but very quick way with anxiolytics involved. That is because the risk of syndromes is biggest with maintaining the medication, not with taking it down. So you have it backwards in a short use situation, if the results are extreme enough then that is what is causing the problem. In any case this was a prescribed medication and he would be stopping it with his doctor or in the ER, that should be implied but let's state it as obvious. This is a short-term medication, although yes it would have made sense to ask him how long he's been on it. In a long-term situation the need for graduation and control is important and critical actually, but in a short term situation the risk is much the opposite, maintaining the medication is the risk and it is immediate and acute. I would guess that in your case, you had been on it for a reasonably long period of time, not a few days, otherwise you could not have withdrawal effects from an acute withdrawal. If you had been acutely poisoned, you could not be on it for very much longer than a day or a few days maybe a bit longer.

[00Mark]

Suggest you speak to your specialist ASAP about changing your medication. Hopefully there's an alternative to pramipexole which will suit you better. That's certainly been my experience with supplementary drugs - one used to make me unbearable tired but now I'm doing okay on ropinirole.

Good luck LAM!

[Freiburg61]

I am diagnosed in 2019 and take Pramipexol since 3 years. The highest dose was1,52 mg retard. I gained weight, fall asleep , my eyesight changes: I can’t assess the distance between cars standing or driving. I can’t drive anymore. I don’ t feel good sitting ina car driving faster than 120 km/ h. I see sometimes dark shadows beside me, sometimes nausea, sleeping bad, and last year ImpulsKontrollstörung, I’m anxious.

… and so on. I decreased Pramipexol June 2023 and a second time 2 weeks ago. Now I’m on 0,78 mg retard and feeling better. The tremor in my right foot is getting more but that is ok. I will try to put it down .

Good luck!

[shaken-not-stirred in reply to Freiburg61]

Yes my pwp was on that for 6.5 years and it made life hell - we got him off it late last year and he is now what he should have been. PD appeared to be advancing rapidly until we got him off it - we had to change his Neuro and between his new Neuro - GP and me we got him off it and it wasn't easy on him but worth it. Yes you mention dark shadows beside you - he still has that but the syncope, nausea and unable to sleep and being anxious and aggressive has resolved - it is a terrible drug and should be banned.

[LagLag37]

If you have that many side effects you should definitely try something different. I have learned that sometimes “less is more “, except with exercise. 🥊

[LGIN]

A mi me diagnosticaron hace 2 años y medio la EP, y el primer medicamento que recetaron fue Pramipexol 0.5 mg tres veces al día, junto con Rasagilina de 1 mg una vez al día, nunca he tenido reacciones secundarias, si un poco de resecarse la boca, pero me hidrato constantemente, hago ejercicios de equilibrio, cardio y fuerza, para volver a tener músculos fuertes principalmente en el tren inferior y gracias a Dios siento que la EP, se ha ralentizado, pero si me esfuerzo por obtener masa muscular, que creo es lo principal para que la EP no avance, troto 5 km todos los días y hago series de ejercicios de fuerza alrededor de 40 minutos de lunes a viernes,

[Radar49]

Sorry that you are having so much discomfort. I was diagnosed with PD years ago. After my initial diagnosis I was put on low dose Levocarb which sent me into a spiral of anxiety, panic, confusion, depression. Then I tried Prolopa which brought on the same symptoms.Then my neuro prescribed 0.25mg Pramipexole thrice daily. I'm now up to full strength 1.5 mg three times daily. I suffer with the typical side effects of the drug but I want to believe that it is helping too abate my PD symptoms which includes joint pain and stiffness, right hand tremors of, slow ed movement just to name some. It is evident that c/l is not helping although my Nero says that I would eventually have to go on it. I wish you the best.

[LAM-16304 in reply to Radar49]

4 days on the new drug and the side effects were so debilitating that I spent most of the time in bed wondering if I was going to die. I didn't die but stopped taking the drug. So far no adverse reactions. Back to a life of misery about half of what it became with the new drug. I started working on the nausea component by using ginger chews and drops. Very little help with either of them. I no longer feel like leaving the house for fear of making a spectacle of myself. The progression of PD is frightening because it is happening to me faster than anyone's accounts I've read about so far. Dealing with it right now I'm desperate for answers. How do you maneuver through life knowing you are destined toward loss of control of your own body? I can't even imagine how mentally I will fight depression, self confidence issues, confusion and anxiety.

[Radar49]

My PD diagnosis was in June 2019.