Weaning off Pramipexole

[Park4me]

I have just begun my weaning off pramipexole. I had recently switched neurologists and then had a knee replacement which kept me from a neuro visit longer than I should have. At appointment doctor discovered my dosage was too high. I am 120 lbs and was taking 1 mg 5x a day. I have dropped 1 mg and am due back in July to I assume begin dropping the 2nd pill. My question is: the pill I dropped was the bedtime one. My nights always have been awful it seem to be worse dropping that dose. My only other medication is sinemet. What could I take in the place of pramipexole that would also help me with getting more sleep at night?

[park_bear]

Are you taking the immediate release or CR version of Sinemet? The CR version lasts longer and may help you sleep better.

For additional help when I need it to take valerian root.

[Park4me in reply to park_bear]

I take the regular sinemet in the day and stronger time release at night. Valarian works for a couple hours

[gaggs8]

I take Azilect and Sifrol. I would love to stop Sifrol. The Azilect seems to straighten my mind out. I love it, but the Sifrol has me waking every 2 hours.

[WinnieThePoo]

Why not ask to switch to the extended release version if you are otherwise doing well on it?

[Park4me in reply to WinnieThePoo]

I will ask about that. I know when I am weaning off it will be miserable. I’m just wondering how to get through it. It’s like having restless legs and stiff pain as well

[WinnieThePoo in reply to Park4me]

Maximum dose is 4.5mg per day. You don't need to wean off much! You can switch direct, with no titration to extended release. One 4.5mg dose in the morning - lasts 24 hours.

[Park4me in reply to WinnieThePoo]

Thank you for tat info. My new neuro did mention that she was not a fan of dopamine agonists and I have been on it for 8 years. What I am noticing is I am starting to have off time about a 1/2 hour before my next dose and then it takes 1/2 hour to an hour to kick in. Then before long it’s a repeat cycle when my next dose is due

[17Hillview in reply to Park4me]

For off times that were increasing I went natural....grapefruit juice and green tea extract. Both knocked out enzymes that hampered levodopa absorption and extended my on time considerably. While these will vary in effectiveness from person to person they worked for me. You must consult your doctor before trying either of these, or else tread carefully.

Take 1/2 hrs before levodopa source. And prepare to reduce your levedopa dose as more of it will be absorbed.

Cary

[Park4me in reply to 17Hillview]

That is very interesting. How did you know to try this? I may have a few questions for you when I’m going through this. Would you mind if I contact you later this year?

[17Hillview in reply to Park4me]

Oh, this is not me. Picked this up right here. If you browse around you will pick up tons of useful advice. There are a lot of knowledgable persons here!!

And of course you can ask me anything at any time.

[pmmargo]

I'm also decreasing my pramipexole ER from 1.5 mg to .75.

I'm hoping it improves my balance which miraculously improved when I started the drug

at an incredible low dose (0.375 mg). (It also restored taste and smell--pretty cool).

I'm only taking pramipexole at dinner and it works at night.

In the morning I take rasagiline 1 mg.

This is supposed to be a magic cocktail (noticed by Teva).

Hope the magic works for you! Best regards P

I think Teva is producing a pill that combined the two ingredients.

onlinelibrary.wiley.com/doi...

[Park4me in reply to pmmargo]

I took rasagaline for 5 years. Didn’t notice that it helped nor did it make me worse. Seemed to have no effect at all

[pmmargo]

Same for me. Maybe we need more placebo effect.

[17Hillview]

Hi, here are my experiences with pramipexole.

I was on pramipexole for about 8 years. In combination with sinimet it resolved my severe ankle dystonia which occurred early on for me.

However, in seeking to reduce my prescription drugs and substitute as much as possible with natural meds, primarily mucuna, I decided to wean off of pramipexole. It was among the worst 6 months of my post PD diagnosis life.

During the day, the low dose Sinimet and mucuna that were my daily meds helped, but the nights were very challenging. Severe anxiety, terrible movement control (difficult to even turn over in bed) and the worst was the Akatheisa.

When things got too tough to bare, I would take a dose of my meds in the middle of the night and it did help. So while I do not have access to CR Sinimet where I live, I agree with others that that may help with the objective of making sure that you have some levodopa in your system over night.

There were times that I just wanted to restart taking the pramipexole just to get some relief, but I stuck it out and came out on the other side eventually.

I share my story to say that if you are resilient it will get better, and if you can access CR levodopa such as Sinimet CR it may help you with the transition. Most mostly I want to encourage you stick it out and get this drug behind you. I was better off without it and will never go back on another dopamine agonist.

Good luck,

Cary

[Park4me in reply to 17Hillview]

Oh my goodness, your story is exactly what I have been fearing and yet expecting. I was hoping for a great alternative but you told it like it is. I am already starting the nights you explained and the dystonia in my foot is becoming more and more unbearable. But I know I have to do this. I will discuss with my doctor in July and start the journey you have experienced. I thank you for sharing me the honest details. I’m scared but determined.

[17Hillview]

Sorry. I did not mean to scare you. As pwp we will go through rough periods. Just think of it as that. Plus be positive that an end will come. Also please use your levodopa source during the night if needed. It will not derail you in the long run. And do get the cr version of your levodopa source. I am convinced that that will help. Again good luck.

Ps when I came temporarily off of all my meds, as a transition to other meds, my dystonia stopped too. And restarted when I went back on meds. Something to look at for yourself.

Cary

[Park4me]

Will do. Thanks again!