THIRD TIME LUCKY

[Lineker]

I confess: I have been useless when it comes to getting off Pramipexole. I have made every possible mistake. And now here I am about to make my third attempt. This latest attempt is prompted by obvious signs of augmentation.

Previously, I had no clear plan: I made mistakes about dosage and I had expected Gabapentin to have some effect while I was tapering. All wrong. Nor did I have anything to deal with the pain/ lack of sleep over the last vital days.

My concern is my doctor. He thinks I’m mad not to continue with Pramipexole and understandably he is not keen to give me opioids. But, he is starting to listen to me, so there is a chance.

My question is this: what can I ask him for to guide me through the last weeks of tapering? Last time I was 5 days off Pramipexole, but I was also 5 days without sleep. Finally, I caved in and took the Pramipexole!

This time I need to get it right. All suggestions welcome. Thanks a million.

[SueJohnson]

Ask for buprenorphine as it lasts 24 hours. For sleep you can ask for zopiclone but however if you have any respiratory problems they shouldn't be taken together. Discuss with your doctor.

[Lineker in reply to SueJohnson]

This was the answer I was hoping for. Thanks as ever Sue.

[Fingerandus in reply to SueJohnson]

hi Sue I have just come home from the docs. where i have waited 1 hr to see her for 10mins trying to explain about my legs and how i am down to my last run on Sifrol and not doing very well arms and legs and daytime jitters now, i told her Lyrica make my feet swell and legs and i cant walk .so she has come up with two different medicines, Ropinerole and Gabapentin i mentioned that ropinerole was a dopamine she said its not the same and if i am in augamentation with sifrol i wont be with ropinarole surely thats not true .. i have refused both scripts so she recommends i go to a sleep study clinic and has sent off a referali will be looking for a new doctor in the near future before that i will cope without her and take my panadiene forte thanks for listening

[Virginic in reply to Fingerandus]

All the best to you!

[Lineker in reply to Virginic]

Thanking you.

[SueJohnson in reply to Fingerandus]

Doctors can be so stupid. It's not the same and you wouldn't augment immediately but it wouldn't take long. However she did get one thing right. You might want to try switching to gabapentin from pregabalin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

[Fingerandus in reply to SueJohnson]

thank you Sue xx

[Fingerandus in reply to Fingerandus]

HI all well well i finally have an appointment with a doc who is very interested in RLs its on the phone but he has a blood count done iron and Vit D and im just waiting to talk to him again today xx

[LotteM]

If your gp is unwilling, in the UK and the EU, Targinact (slow release oxycodone combined with naloxone) is officially licensed for RLS. If your gp still finds that it is a too strong opioid, tramadol may be a good temporal alternative. It worked for me to help me get off ropinirole (another DA).

[Lineker in reply to LotteM]

Thanks for the advice. Much appreciated.

[Retiredlady]

Fully understand how u ‘caved in’ and took pramixerole ….it’s just so hard to get off!If I didn’t have my panadeine forte to help,I would not have been able to do it.

I was only on Gabapentin (800mg) for 3 months before I switched over to Pregabilin.I take 75mg at 8 pm and another 75mg at 11pm…. Not convinced it’s helping that much.It makes u very hungry and therefore gain weight which isn’t good for my heart etc.

These days( post pramixerole)I rely on targin(slow release 10/5mg) which I take at 9pm each night.

I think my rls symptoms are less severe now but unfortunately sometimes still have daytime symptoms so still unable tonap( oh, how I yearn to be able to do this,)

My sleep specialist told me it can take up to a year to fully recover from that horrid pramixerole,so keeping my fingers crossed🤞

[Lineker in reply to Retiredlady]

What a lovely reply. Thank you so much for writing. Every note like this makes me more determined to get off Pramipexole.

[SueJohnson in reply to Retiredlady]

I remember you were going to post your doctor's name after your December appointment. Can you give it now so if needed we can refer others to him/her.

[tagaxel]

The best way to get off pramipexole is to micro taper. By that I mean you simply take the pills to a compounding pharmacist (your physician has to write a separate prescription for the compounding pharmacist) and have the pills rendered into a liquid form. It is still a difficult process because the dopamine agonist is so nasty. Are you saying that other treatments like gabapentin and pregabalin don’t work for you?

[Lineker in reply to tagaxel]

I reckon I took Gabapentin at the wrong time ie - when I was still trying to withdraw from Pramipexole. I understand that Gabapentin doesn’t work well in this situation? I’m hoping my doctor will prescribe Brupenorphine to help with the process. Fingers crossed.