Reducing pramipexole

[pennygates]

I'm on day four reducing pramipexole. Gone down from 4x0.088 to 3x0.088. This is the worst night I've had for some time. I get some RLS every night, but this has increased in intensity, and not let up at all. Have had 5x5mg oxycodone immediate release spread throughout the day and tonight. Had strawberries and natural Greek yogurt as my last snack, at 6pm., which I'm usually fine with.Is the reduction in pramipexole likely to be the reason for the increase in persistent and very aggressive rls. Any ideas?

[SueJohnson]

Yes it is the reduction. Yogurt and strawberries should have no effect on your RLS.. Go back up by a half tablet. You will still have increased symptoms from what you had on 4 tablets but hopefully not as bad as you are having now. Then wait for the symptoms to settle before reducing again by a half tablet. If even this is too much, reduce by 1/8 tablet.

[pennygates in reply to SueJohnson]

Thanks Sue

[pennygates in reply to pennygates]

I'm feeling sorry for myself right now. A Crohn's flare up has also begun, so being sick too. Any medication hasn't stayed down today so legs have got worse. But have managed to keep down tonight's dose.

[Joolsg]

Yes. Withdrawal from Pramipexole is more difficult than from heroin or crack cocaine but most doctors have no idea. The D1 receptors are 'screaming' for their dopamine hit.You will have several bad nights, but hopefully it will settle.

Most experts recommend a VERY slow withdrawal. Half a 0.088 pill every 2 weeks. For higher doses like yours, they recommend a minimum 6 month's withdrawal.

The Johns Hopkins RLS clinic follows a more brutal withdrawal schedule. They believe that it's hellish after each withdrawal, so a faster route is more difficult, but gets the suffering over more quickly. They recommend a 3 week withdrawal.

It's a personal choice, but most people choose the slower route. I even read on here of someone whose pharmacist turned his Pramipexole into a liquid and he used micro dose reductions over a year to avoid withdrawal symptoms.

If you are struggling, follow Sue Johnsons advice and go back up half a pill and try reducing by 1/4 pill every 2 weeks.

[pennygates]

Thank you. Will go back up by half a tablet.

[sigurdur]

Hi, Know that you are not alone. I am myself reducing 0.18 every 2 weeks and the experience is a surreal nightmare. I will try kratom, delivered by mail later today.

[pennygates in reply to sigurdur]

Hi SigadurYes it's a nightmare, I know.

I hope the kratom will help you, and hope you will post how you get on. Good luck

[Simkin]

When I came off pramipexole I just shook from head to toe. It was terrifying.Bear with it. The feelings will ease & you will come out the other side.

[pennygates in reply to Simkin]

It's hard, especially when rls isn't the only health problem. Everything is impacted by rls. It's by far the worst of the other things, and they are challenging at times.

[Simkin in reply to pennygates]

I do understand. When I was going through cancer the chemo made my legs even worse. All the very best.

[Katyparis]

Oh Penny I feel for you, Really do. I do not have suggestions other than codeine but consult your doctor or pharmacist first please. I tried doing the same last week & it was such hell without letting up all night just as it was when I detoxed from dopamine after augmentation years ago. Sending virtual hugs.🌷

[pennygates in reply to Katyparis]

Last night was really bad, as I had a Crohns disease flare up yesterday and was unable to keep anything down, including my medication. But today I'm calmer, and able to eat again and take meds. I maybe reduced too quickly so have halved a tablet today , after advice from Sue and Jools. Thank you so much for thinking of me. It really helps to know that you aren't alone.

[Louless9]

I would say yes . I did the same, reducing it gradually over a week. I only got about 2 hours a night sleep. It’s going to get worse until you change medication.

[pennygates in reply to Louless9]

It feels like I'm caught between a rock and a hard place. Going back is not possible, as its causing horrible symptoms, and going forward isn't great, but hopefully there is an end in sight. Just hope I get to it, as I'm worn out and very weak.

[Louless9]

if I ever had to do it again ( I’m sure I will) I’ll have to take time off and also make sure someone is with me. I felt like a zombie and could’ve fallen asleep stood up! Try and drink calorie rich drinks if you can

[SueJohnson in reply to Louless9]

Why would you have to do it again?

[Perhapslove]

You will get through this to a better place, believe me. I know that those hellish nights are torture. The people on this site are so fantastic with advice and support. If it weren't for SueJohnson and Joolsg, I would have thought that I was losing my mind. Also, the Mayo Clinic Article on RLS Management is a pot of gold. I gave it to my PCP to help h@er understand how to manage patients who are experiencing augmentation. She actually admitted to me that she didn't know about augmentation with RLS. There is a "Secret Sauce" that will help once you and your doctor find the right meds for you. You will be able to manage your nights again and sleep like a baby. I send you my best wishes that this will happen pretty soon.

[pennygates in reply to Perhapslove]

You are so kind. Those two, Sue Johnson and Joolsg are amazing, and others too, too numerous to mention, are there to help. I hope that one day I will know enough to help others too. As Joolsg says, we all need to become 'patient experts' with this condition. My GP just scratches his head with all the information I present to him. He is well meaning, but knows very little about RLS, nothing about augmentation, and even less of up to date treatments. It's an uphill struggle. I think he dreads seeing me to be honest.

To sidestep all of that I'm hoping to see a specialist soon, an expert on RLS. I will have to pay privately, but it will be worth it to get onto the right track, and a relief to speak to someone who doesn't think I'm talking in Japanese!