getting off pramipexole

[Moretravel1]

I’ve run into a RLP problem trying to get off pramipexole. I reduced the pramipexole from .5 mg to .375 mg. I’m into my 4 th week. I’ve increased the Gabapentin to 600 mg and having to use codine twice daily. I’m taking 5 mg of codine per dose. I’m still having from moderate to severe RLS pain. I need advice on adjustment of my medicines. Thank you. Travelmore1

[Joolsg]

Sadly, severe RLS and pain cannot be eliminated during withdrawal.The vast majority suffer badly during withdrawal.

But, keep going and follow the advice SueJohnson gave you about reducing by half a 0.125 pill every 2 weeks.

The 600mg gabapentin won't help until about 4 weeks after your last dose of Pramipexole.

You could ask your doctor for a stronger opioid to help the withdrawals, but it won't eliminate all the severe RLS caused by withdrawal.

[Moretravel1 in reply to Joolsg]

Do you mean my taking Gabapentin is useless unti I get off pramipexole

[Joolsg in reply to Moretravel1]

For most people yes. The augmentation and withdrawal symptoms are too strong and therefore it's a waste to start taking it too early in the withdrawal process.It's best started around 4 weeks before last dose of Pramipexole. It takes 3 to 4 weeks to take full effect, so by the time the withdrawal has taken place, the gabapentin should then start to help.

[Moretravel1]

Trying to get off pramipexole by using 600 mg Gabapentin and 20 mg codine. I have to knock myself out at night to get 4 hours sleep without withdrawal pains. Still taking .375 pramipexole. Intensity is becoming stronger each night. I’m concerned about running out of codine. I don’t think the Gabapentin works at all. In a mess with a doctor that cannot help. My doctor has given me 20, 300 mg Gabapentin tabs, and recommended me to cut back a 1/3 every week until I’m off the pramipexole. The only reason I have codine is because of a chronic cough that he can’t help me other than occasional use of codine. I’m gonna run out of codine soon, then what?

[Joolsg in reply to Moretravel1]

Best to make a new post as people won't see this.Withdrawal from Pramipexole is utterly hellish. That's why the majority of top RLS experts suggest a minimum of 6 months Withdrawal.

If you reduce the speed of withdrawal, it may be less traumatic. 1/3 a week from your high dose will be very difficult.

Can you see a doctor who knows about RLS?

Where are you?

Dr Buchfuhrer in S. California, Dr Berkowski in Ohio, Dr Winkelman in Boston and Dr Ondo in Texas are all top RLS specialists and would prescribe meds to help you through the withdrawal process.

[Moretravel1 in reply to Joolsg]

Arkansas. Sue gave me a doctor in Ft Smith but I have to get a recommendation from my primary doctor to get an appointment. That’s not gonna happen. He wants to use his method.

I’m trying to get off pramipexole using 600 mg of Gabapentin and codine. My withdrawals are more violent and I don’t think the Gabapentin helps at all. I had to knock myself out with codine the last two nights to sleep. I’m running out of codine and my method of substituting Gabapentin for pramipexole is not working. I’m in the middle of nowhere. Is it possible to go back to pramipexole

[Joolsg in reply to Moretravel1]

If you can't see another doctor who knows what he's doing, you'll suffer a brutal withdrawal.As SueJohnson has previously advised, perhaps kratom or cannabis will help to reduce your withdrawal.

Do consider writing a long letter to your current doctor to explain how badly you are suffering.

Pramipexole over stimulates the D1 receptors. They then SCREAM for their 'hit' of dopamine from Pramipexole. This causes SEVERE RLS.

When this has happened, you HAVE to get off the stuff. It's become poisonous.

If you go back on Pramipexole, the D1 receptors will simply keep screaming for their hit.

Withdrawal is brutal and hellish, but it is possible, even at the fast rate your doctor insists upon. Johns Hopkins hospital also follow a fast 3 week withdrawal without ANY gabapentin or codeine to reduce symptoms.

So, as hard as it is, stick with it.

Use cannabis/kratom as needed.

Once off Pramipexole, you'll have a really bad 2 weeks and then things start to improve. That's when gabapentin will start to help.

[Moretravel1 in reply to Joolsg]

Thank you Joolsg. Yesterday was a bad day for me. I appreciate the encouragement. Today was better.

[Purpleyam in reply to Moretravel1]

Hello Moretravel1, I hear myself in your posts so clearly. As Joolsg and others have been encouraging me as well. I am in Canada, but read Dr. Earley's work with RLS patients (John Hopkins Medical center). My situation is a bit ahead of yours is that I've ended Pramipexole over 2 weeks ago then stopped taking Pregabalin as I didn't like the side effects and it wasnt working. Now I understand that I'm not yet cleared of the mess that Pramipexole has done to my tired dopamine receptors, and I could be withdrawing for awhile yet from both drugs. Heres where its THE SAME story - I had leftover Tramadol (opioid) from a surgery and if I give in at night in desperation and take only a 1/2 a pill it calms my RLS and I sleep!. I'm running out too! What is our next move? Keep trying to clear out the Prami, don't give up on that. But yes you need additional support. I've also got cbd oil with THC as a night formula for sleep. It at least calms you down to relax, even if you fidget around. I too take 50 mg iron bisglycinate with Vit C at bedtime. I'm in limbo as well for now. I feel for you so much. I'm no help but can relate to your angst.

[GaryHB]

Hi. I was in the same position. I stopped it cold turkey (not advised) and it was a hideous time. The people here give great advice. Teddij in this forum suggested I take Kratom to cope with the side effects. I bought some and it really saved me and reduced the RLS considerably. I hit bad depression and anxiety coming off Pramipexole. Be encouraged - there is light at the end of the tunnel. Keep going and listen to these caring wonderful people in this form who are such a help.

[Moretravel1 in reply to GaryHB]

thank you for sharing

[Purpleyam in reply to GaryHB]

Interesting, I should look into how to get Kratom to tide me over the withdrawal phase. Although I'm trying to work with my doctor and she knows I was attempting to also go cold Turkey. I need to go back and say I gave in last night and and took a 1/2 a Tramadol and got 6 hours of broken sleep.

[GaryHB in reply to Purpleyam]

Do your research with Kratom first. It is unregulated and in some respects untested.

[Purpleyam in reply to GaryHB]

Hi Gary, I've just been researching it. Yes it causes concern, as with any unregulated supplement. I'm not jumping in yet but will do more looking at it in the near future . It seems weird that it can cause mild euphoria or can be sedating. Which type of strain are you taking?

[GaryHB in reply to Purpleyam]

I am not taking any at the moment. I took it for 6 months to get over the terrible withdrawals from stopping Pramipexole cold turkey. It worked - better than Pramipexole in fact. The red strain is the strongest for pain relief and by nature is best for RLS. It is good with pain and is sedating in higher doses. The white strains are super energising but poor with pain and so dont help with rls. The green strain is a mid range and a bit of both, but once again not suited to relieving rls. The red 'Bali' or red 'Maeng da' varieties are good. As they are similar in function to opiates they come with the same risk of dependency and withdrawals. Kratom.org is a good website for information. Its important to follow dosage guidelines carefully too.

[Moretravel1]

I’m trying to get off pramipexole using 600 mg of Gabapentin and codine. My withdrawals are more violent and I don’t think the Gabapentin helps at all. I had to knock myself out with codine the last two nights to sleep. I’m running out of codine and my method of substituting Gabapentin for pramipexole is not working. I’m in the middle of nowhere. Is it possible to go back to pramipexole

[Joolsg in reply to Moretravel1]

No. See response above.

[Moretravel1 in reply to Joolsg]

Joolsg, does Gabapentin have bad side effects. Am I changing one addictive drug for another one?

[Joolsg in reply to Moretravel1]

There is a difference between addiction and dependence. We are dependent on the drugs for RLS, but not all cause 'addiction'.

Withdrawal from dopamine agonists is regarded as the most brutal.

If you don't tolerate gabapentin, the withdrawals are nowhere near as bad as from Pramipexole. As long as you reduce gabapentin very slowly, the withdrawals are tolerable.

I was on a similar drug, pregabalin (150mg), for 5 years. I withdrew very slowly over 5 months and had no withdrawals.

Side effects of gabapentin vary for everyone. The most common are dizziness, loss of balance, double vision and weight gain. They settle within 2 to 3 months.

[Moretravel1 in reply to Joolsg]

When you got off pregabalin was your RLS gone

[Joolsg in reply to Moretravel1]

No. I was on Oxycontin 25mg and 150mg pregabalin for 5 years. I still had very severe RLS.So I stopped pregabalin slowly and my RLS was still very severe.

I made a straight switch from 25mg Oxycontin to 0.4mg Buprenorphine. My very severe RLS disappeared.

I have no RLS and sleep 8 hours every night.