clarification on procedures for getti... - Restless Legs Syn...

Restless Legs Syndrome

22,607 members16,717 posts

clarification on procedures for getting off pramipexole

Yorkie111 profile image
19 Replies

I just want to make sure I am reading the procedure for going off pramipexole and onto pregablin correctly. I started taking pregablin along with my pramipexole and will do this for about 4 weeks. At that point I will start reducing the pramipexole while still taking pregablin. I just want to make sure I don’t start reducing pramipexole as soon as I start taking the pregablin.

Thanks

Written by
Yorkie111 profile image
Yorkie111
To view profiles and participate in discussions please or .
Read more about...
19 Replies
SueJohnson profile image
SueJohnson

You should start reducing the pramipexole. You don't need to start the pregabalin until you are 3 weeks away from being off pramipexole.

Yorkie111 profile image
Yorkie111 in reply toSueJohnson

Thanks. Glad I asked!

Yorkie111 profile image
Yorkie111 in reply toSueJohnson

Sue, why wouldn’t it work to be on both pregablin and pramipexole for a couple of months and then start cutting back on the pramipexole?

Thanks

SueJohnson profile image
SueJohnson in reply toYorkie111

As Joolsg said, it would be a waste of pregabalin as it won't really help until you are off pramipexole and your withdrawal symptoms have settled. Plus you are just putting off reducing the pramipexole.

Yorkie111 profile image
Yorkie111 in reply toSueJohnson

Thanks Sue. I am just trying to get it all straight in my head since I am just starting this journey. Am I reading correctly that some people need to continue pain meds at night even after they have made the switch to gabapentin?

Thanks!

SueJohnson profile image
SueJohnson in reply toYorkie111

In general no. If gabapentin doesn't work, people will usually switch to an opioid which is generally used for pain, but in the case of RLS that is not what it is used for although some people have painful RLS but if gabapentin works it usually takes care of the pain.

Yorkie111 profile image
Yorkie111 in reply toSueJohnson

Thanks!

karjbee profile image
karjbee in reply toSueJohnson

There doesn’t seem to be from the literature the exact timing of wean down wean up. The bigger problem is just stopping it cold turkey and starting something else. I have changed psych drugs a lot and the new drug is started at a very low dose and the existing drug is very slowly weaned for a smooth transition. I’ve looked a lot in the research and the biggest issue is weaning off to fast. I attended the RLS research summit last week. The suggestion is to wean a lot more slowly then previously thought. And of course a lot of success with low dose opioids to help with withdrawal symptoms. Seems to take a lot of finesse and patience in weaning off drugs affecting the mind. But my take away was the slower the better and different for every person.

SueJohnson profile image
SueJohnson in reply tokarjbee

Agreed! That is why although my usual advice is to reduce by 25 mg for ropinirole or 1/2 of a .125 (.088) tablet every 2 weeks I also say you may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one.

karjbee profile image
karjbee in reply toSueJohnson

thank you, I am afraid to have symptoms again, when right now I am not. Seems like upsetting the apple cart so to speak. However I know its going to happen, so I am going to persevere! AND I have a doctor now who is working with me rather then against. I anticipated having the same issue with this doctor. I was going to pay the $500 consultation fee for Dr Buchfurer, but now I don't have to! The support groups on RLS foundation have been excellent if anybody is looking to share in our journeys. They are all virtual which is perfect.

karjbee profile image
karjbee in reply toSueJohnson

Just as update. After my iron infusion my ferritin level went to 900! First time it’s ever been above 50! So now I’m onto the next step. It’s tempting to just stay on the mirapex, since I’m not having symptom. I’ve read all these horror stories of getting off. But I have to do it. I have an appt coming up with my doctor to discuss that.

SueJohnson profile image
SueJohnson in reply tokarjbee

Did you wait 8 weeks before testing again? If not then it is not an accurate measure as it will test much higher than it really is.

karjbee profile image
karjbee in reply toSueJohnson

Oh no I didn’t. The doctor said test anytime after, it’s been 2 weeks. Hmm. That makes sense. I’ll discuss that with him then. Although I’m thinking it still might be ok to start weaning . Thank you.

SueJohnson profile image
SueJohnson in reply tokarjbee

Doctors who think they know everything !!!

karjbee profile image
karjbee in reply toSueJohnson

Exactly. Well at least he seemed to know more than the rest!

SueJohnson profile image
SueJohnson in reply tokarjbee

To be sure you get an accurate test next time stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.

karjbee profile image
karjbee in reply toSueJohnson

Thank you

Joolsg profile image
Joolsg

A waste of pregabalin really. Pregabalin may slightly help with sedation but it's not very helpful at stopping severe withdrawals at every dose reduction.So it's better to get down to the last 0.125 pill before you add pregabalin.

Low dose opioids help to reduce the severity of RLS at each dose reduction if taken for 3 or 4 nights.

CatMan2024 profile image
CatMan2024

Hi, can the forum advise please what the incremental reductions are for weaning off Pramipexole where the dose has been prescribed as: 2 x Pramipexole 260 microgram tablets (prolonged release) at 8pm and 2 x Pramipexole 180 microgram tablets (quick release) at 9pm. I can see info about Ropinirole but I’m not sure if that is the same. My partner is trying to switch to Pregabalin after augmenting on Pramipexole. Many thanks

Not what you're looking for?

You may also like...

Transitioning off Pramipexole for RLS

I'm trying to transition off of Pramipexole (Pram) which I've been taking for over 20 years. The...

coming off Pramipexole

my doctor has ordered me the amount of Pramipexole he wants me to take to stop completely...

getting off pramipexole

I’ve run into a RLP problem trying to get off pramipexole. I reduced the pramipexole from .5 mg to...

RLS coming on pramipexole what to do ?

Hi, Looking to come of pramipexole, i'm seeking advice before i speak to my doctor. I see that i...
Deathy profile image

Transitioning off pramipexole

I keep reading the absolute hell many people experience transitioning from pramipexole (or some...
robertff3401 profile image

Moderation team

Kaarina profile image
KaarinaAdministrator
Geepjul profile image
GeepjulAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.