coming off Pramipexole : my doctor has... - Restless Legs Syn...

Restless Legs Syndrome

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coming off Pramipexole

Moretravel1 profile image
16 Replies

my doctor has ordered me the amount of Pramipexole he wants me to take to stop completely Pramipexole. Right now .75 mg of Pramipexole at night, with Gabapentin 300 mg. He wants me to cut out a 1/3 of my Pramipexole weekly over 3 weeks and said he may would increase the Gabapentin as needed which will be low doses, probably less than 300 mg weekly. Is his idea of eliminating Pramipexole a good idea? I don’t want to start heavy withdrawal.

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16 Replies
SueJohnson profile image
SueJohnson

I have already given you advice in your previous post. You may need to switch doctors.

If you tell me the city and state you are in, I may be able to give you the name of a good doctor.

Moretravel1 profile image
Moretravel1 in reply to SueJohnson

Springdale Arkansas

SueJohnson profile image
SueJohnson in reply to Moretravel1

Dr. Tonya Phillips, neurologist, 2713 S 74th St Ste 401 Fort Smith, AR 72903 , 479-314-7590. Treats a lot of RLS patients and has excellent ratings.

Moretravel1 profile image
Moretravel1 in reply to SueJohnson

Thanks for your help. I was looking forward to seeing Dr Phillip at Fort Smith but I’ve got to have a recommendation from my doctor to get an appointment. That’s not gonna happen and I’m not using my doctor’s recommendation in getting off Pramipexole. Stuck right now but have an appointment with another doctor in 3 weeks. I’m on hold hoping he can help for withdrawals. I’m cutting back .125 as recommended and using 300 mg Gabapentin for support, every two weeks. Maybe this will work without withdrawal being too bad.

SueJohnson profile image
SueJohnson in reply to Moretravel1

what is the name of the doctor?

Joolsg profile image
Joolsg

I agree with SueJohnson advice to your previous post.You need to ask the pharmacy to switch the 1.5mg pills to the smaller 0.250mg and 0.125mg pills so you can reduce slowly.

These drugs are no longer first line because of the very high rates of drug induced worsening and Impulse Control Disorder.

You're taking above the FDA max for RLS.

Two schools of thought.

Johns Hopkins adopts the fast 3 week withdrawal suggested by your doctor. BUT the withdrawal will be absolutely hellish. Unless you're young, fit and healthy, this fast approach is NOT recommended.

The usual approach by the top RLS experts, is a slow, tapered withdrawal over months.

Reduce by a half a 0.125 pill every 2 weeks and you may need cannabis and a low dose opioid to settle the increased RLS.

Getting off Pramipexole is very difficult. Experts say it's harder than heroin withdrawal.

Follow SueJohnson advice about iron. Raising serum ferritin above 100, preferably 200, resolves most cases of RLS. But NOT until you're off dopamine agonists like Pramipexole, Ropinirole, Rotigitone patch, Completely.

Katyparis profile image
Katyparis

Hi yes coming off Pramipexole gradually is preferred. Dopamine medications are being prescribed lesser these days due to the augmentation factor. Good luck x

SurvivorD profile image
SurvivorD

My RLS Journey.........I was on 1mg Pexola and on the "withdrawal" journey due to augmentation. I reduced my dosage by a quarter every two weeks. I got to .50mg at night and to say it was hell is an understatement. A family member who like myself has suffered for over twenty years with chronic RL was advised by her Neurologist to take her medication three times a day with 0.25mg instead of the 1mg at night. It worked wonders for her. I cowardly stopped my withdrawal of the Pexola and followed her method and it too worked for me. In the back of my mind I knew "augmentation" would eventually catch up with me!!

I have cut down the dosage and currently only taking 0.25mg twice a day. At 2pm and again 8pm and the withdrawal has been minimal. I do not get those "creepies" at all in the afternoon and in the evening I can actually sit beside my husband and watch TV. A few Sundays ago I watched a series with 8 episodes and no RL.

From Monday I will take the next step and reduce my dosage at 2pm to half. I am still taking my Iron supplement with Vit C.

My other medications I take in the morning. I take my Pexola on its own. I don't want it to compete with anything else (ha haha).

I am hoping that by my last tablet my Iron has increased and I will be one of the 60% that can come off all medication.

I am in no way saying my method will work for you but if I can help just one person then I'm a "a happy chappy". Wishing you strength on your journey.

Moretravel1 profile image
Moretravel1 in reply to SurvivorD

When you take 25mg twice daily, do you have a supplement, like Gabapentin. I’ve cut back to 50 mg, but take 400 mg of Gabapentin

SurvivorD profile image
SurvivorD in reply to Moretravel1

No I tried Pregabalin (known as Lyrica in South Africa) when I was on my withdrawal of Pexola of 1mg at night. It did not agree with me for many reasons. I am currently taking 0.25mg at 2pm and 0.25mg at 8pm of Pexola. Just before bed at 10pm I take my Iron and Vit C. I have absolutely no RL in the evening. Whereas before within 5 minutes of sitting down the "crawlies" would start!!! Occassionally when I wake in the night (my sleeping pattern is very bad, sure from the years of suffering from the RL) I have the odd RL but nothing compared to previously. I know I must cut down my dosage and eventually go off all the medication but so enjoying the relief that I am hesitant. One thing for sure I have read from all the chats on the forum is.........RL is a syndrome that has no hard and fast rules when it comes to medication!!! What works for one does not work for another. All we can do is give our support and if our experience gives relief to one person it an achievement.

SurvivorD profile image
SurvivorD in reply to SurvivorD

I should have added......start by taking 0.25mg three times daily. I got a new script from my doctor for 0.25mg then I didn't have to worry about breaking the tablets. The reasoning behind the method is you getting the medication in your system throughout the day. Not in one hit at night.

Moretravel1 profile image
Moretravel1 in reply to SurvivorD

I meant to say 1/2 mg one daily with 400 mg Gabapentin

tagaxel profile image
tagaxel

Yes, his idea of getting you off pramipexole is great but cutting it by one third is probably going to put you in hell. The safest way to get off the pramipexole is to have the pills taken to a compounding pharmacist and rendered into a liquid so that you can withdraw using a micro taper schedule. Keep in mind that pramipexole is a neurotoxin and is as difficult to eliminate as cocaine or heroin. I will do the math for you if you need it in order to have your physician write a script for the compounding pharmacist. I have been trying to get off the stuffer two years and I am now calculated it may take another six because of all the problems with the dopamine receptors.

fishinphil1946 profile image
fishinphil1946

I suggest 0.125mg reduction per 2 weeks instead of 0.25 per 1 week. It took me 32 weeks to get off 2.0mg at 74 years old. Not fun cutting pills into quarters but can be done.

Moretravel1 profile image
Moretravel1 in reply to fishinphil1946

Your right I know.

loloball2 profile image
loloball2 in reply to fishinphil1946

I am trying to taper .50mg and wondered how to do it. How much should I drop at a time and how often. .125mg every 2 weeks or is that too much too fast? Thank you!

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