Here I go ….

[Yorkie111]

yesterday was my last day on Pramipexole . I am in agony and the Buprenorphine isn’t helping , Just venting. Thanks

[Joolsg]

Well done for getting off the poison.Every day from now on will get a little better. In 2 weeks, the Pramipexole will be out of your system and the dopamine receptors will start to calm down and heal/repair.

Stay strong. You have done brilliantly.

[Yorkie111 in reply to Joolsg]

Thanks Jools! Two weeks is a long time but worth it. We have a new young dog and she loves me being up with her at night even if I am pacing, stomping and crying!

[Joolsg in reply to Yorkie111]

Aww. Not gonna lie. It's hell. I very nearly didn't make it. I fell over so many times from sheer exhaustion. I would fall asleep walking, fall over, wake up & start all over again.The only things that helped were kratom red vein borneo powder. It was legal in the UK in 2016. Now it's illegal but people can still get it posted from

kraatje.eu

In the Netherlands.

I only ever recommend it while getting off DAs as it can cause addiction and it quickly causes tolerance. But using it for 4 weeks in small doses should be alright.

But just noticed you are on 2mg Buprenorphine so you can't take any other opioids or kratom.

I also used illegal cannabis (my adult children sourced it & made me reefers). Cannabis IS now legal for medical reasons in the UK.

Cannabis really helped as it knocked me out for 30 mins sleep after 5 days of zero rest/sleep.

My old GP was appalling. Almost laughed at me sobbing for help. Told me to drink milk as the calcium would help my aches & pains!

The medical ignorance is shocking.

Luckily my MS team respond to emails within days & my MS neurologist told my GP to prescribe tramadol or Oxycontin.

It's scandalous that we have to fight tooth & nail to get any help.

We should all be admitted to rehab to get us safely through withdrawal.

They're prepared to dish out dopamine agonists like sweeties, but then leave us to fester.

Not cool.

[Yorkie111 in reply to Joolsg]

Jooles,

Fortunately my neurologist PA is really conscientious and does his research. He told me the other day that he never realized how bad RLS withdrawal was until I explained how painful mine was.

I think medicine/doctors have become a business and not a service to help people the way it was years ago. Very disturbing.

I was just totally surprised with the Buprenorphine didn’t even put a dent in pain, the dizziness, hands shaking and, like you, I dozed off while walking I circles! Scary.

[Birdland in reply to Joolsg]

Joolsg, I couldn’t help but have a reaction to the milk comment. When I was young, maybe 5, I told my mother that my legs were bothering me. She said it was a “Charlie horse” (leg cramps) and that I should drink some milk! In my mother’s defense she was not a doctor in the 21st century, or any century.

When I was coming off of Ropinirole I often thought that if I was trying to kick heroin I’d be referred to a rehab center. Such a lack of understanding of DA’s. I've never kicked heroin. but I’d venture to say what I went through was much more difficult. Possibly one difference is I never had cravings for ropinirole (although my brain did), just a desperation to sleep.

[Joolsg in reply to Birdland]

You're absolutely right.

Dr Buchfuhrer & Dr Berkowski are top US experts and they often say withdrawal from a DA is worse than heroin withdrawal.

I don't know if it's true.

But I never want to experience something like that. Ever again.

A friend of mine checked herself into a private rehab clinic to get off Ropinirole.

[Claire_1c]

What dose are you taking? Maybe it's not quite enough?

[JenniferBut in reply to Claire_1c]

I started on Buprenorphine, the 5 mg norspan patch, it didn't work, methadone was added and it worked immediately. I agree, the dose may be insufficient

[SueJohnson]

Congratulations for getting off that poison. This time is the hardest part but hang in there as Joolsg said it will get better! And I would increase your buprenorphine. The usual effective dose according to the Mayo algorithm is .5 to 6 mg. although after your symptoms go away you then might want to decrease it slowly to the lowest effective dose.

Are you still taking pregabalin?

[Yorkie111 in reply to SueJohnson]

Sue thanks. Yes, I am taking the pregablin. Not taking the pramipexole. That is what I am supposed to do, right? The Buprenorphine _Naloxone is 2mg/0.5mg and it did not help at all. I took a half a film about 4 pm and the other half about 10 pm. any advice?

[SueJohnson in reply to Yorkie111]

How much pregabalin?

I'll let others answer on the film but that amount should help.

You just may have to wait as your withdrawal symptoms will get better.

[Yorkie111 in reply to SueJohnson]

Sue I am taking 2, 50 mg pills.

[Joolsg in reply to Yorkie111]

Buprenorphine won't cover ALL the withdrawal symptoms- but at that high dose- it should help somewhat.Once off Pramipexole completely- you might want to reduce the Buprenorphine down.

Most UK patients are on 0.4 to 0.8mg.

[Helthom in reply to Joolsg]

Gosh everyone is suffering so much. It’s just awful. I’m so sorry to hear all these horror stories about side effects and withdrawal.

People who don’t suffer from RLS have no idea how horrific it is.

I have been on Ropinerole for ten years, slowly increased to 3mg and have definite augmentation. I started to reduce but only by 0.25mg and I’m so scared of withdrawal which I’m beginning to suffer from. I’m also scared of taking gabapentin or pregabalin or an opioid because of the horrific side effects.

I live in France and so have the language problem as speaking in medical terms is a whole different area and so far I have been on my own as far as medication is concerned to swap and change things. My GP just prescribes what I ask for!

After reading these awful horror stories I just don’t know what to do as I have a very busy life popping back and forth to the UK to care for my grandchildren and my 96 year old mother so need to have a clear head and need to drive.

The fear of what is to come fills me with absolute dread.

Good luck to all fellow sufferers. Thank goodness we have the wisdom of the people on this site to help and guide us.

[Joolsg in reply to Helthom]

There is a printable withdrawal schedule on RLS-UK website under 'Useful Resources'.When you plan your withdrawal from Ropinirole- you will need to clear your diary.

The last month in particular.

And you can ask for help and advice on here.

[SueJohnson in reply to Helthom]

Who is your doctor in France? Being willing to prescribe what you ask for is actually great. I keep a list of doctors so would love to add the name.

My suggestion is to get a jewelry scale that measures down to the .01 gram and then you can shave off just a tiny amount, measure it and reduce by that amount every 2 weeks. It will take much longer but you will have much fewer withdrawal effects.

[SueJohnson]

That's a low dose. If you are not having side effects that bother you, you could try increasing it by 50 mg. Then once your symptoms settle in a few weeks if the suboxone doesn't control your symptoms you can add half of a pill (or ask your doctor for 25 mg pills) every couple of days.

Once your RLS is under control you shouldn't need both so you can decide which one you want to keep and slowly reduce the other. If it is the pregabalin then reduce by 25 mg every 2 weeks. You may want to keep 25 to 50 mg to help you sleep if needed.

[Jumpey]

Hang on in there.It will get better.

[HipHop1972]

Hi Yorkie111, as Joolsg said you have done really well it took me 13 months to get off 6mg Ropinirole so I know what you are suffering. Trust us, it does get easier and you are taking additional non dopamine medication which will take time to start to work, but they will, I only had a low dose codeine to see me through but now have Buprenorphine patches and the struggle to have them prescribed is another story. Try and stay strong we are all here for you.

Take care it will end HipHop1972

[intermk]

As others have noted, 2 mg may not be enough for you. When I started Bupr I had been using Kratom. My doc kept titrating up the Bupr dose until I began to feel relief. It took 12 mg to calm legs, arms and face. But once on 12 mg for a few weeks we started to decrease the dose to find the absolute minimum amount of Bupr that would work. That number varies from 6 - 8 mg every morning. Once I've had 8 mg for a few days I can then go down to 6 mg for a few days. When symptom breakthrough occurs I then go back to 8 mg. You might wonder why I don't just take 7 mg daily. The reason is because the 2 mg tabs don't cut well. Oftentimes little pieces shoot out of the cutter before it's fully closed no matter how fast I perform the procedure. And much of the tablet turns to dust which I try to save but . . . . I really can't afford to lose any so I stay on the aforentioned 6-8 mg regimen.

[Yorkie111 in reply to intermk]

Thanks for your info. I have to admit I don’t always follow what dose is recommended on meds but I was a little concerned about taking more than the 2 mg limit/24 hrs on this since I’ve never used it before.

[intermk in reply to Yorkie111]

You're smart to be cautious.