Pramipexole - update: PROGRESS - have... - Restless Legs Syn...

Restless Legs Syndrome

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Pramipexole - update

Lineker profile image
36 Replies

PROGRESS - have done 15 days on one Pramipexole tablet per night. About to change to half a tablet.

SLEEP - managing OK

PAIN - I was hoping for Buprenorphine; Dr gave me CoCodamol. Have to say it is not touching the augmentation/ withdrawal pain.

CONCERN- I need better pain relief to get through this!

SUGGESTIONS - welcome

AND THANKS AS EVER

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Lineker profile image
Lineker
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36 Replies
SueJohnson profile image
SueJohnson

Congratulations on your progress but sorry you couldn't get buprenorphine. How much CoCodamol are you taking? And what was his/her reason for not giving you buprenorphine?

Lineker profile image
Lineker in reply toSueJohnson

Hi Sue - am currently taking 2 tablets 4 times a day. The tablets are 8/ 500mg.

As for the Buprenorphine - the usual stuff about epidemic and not wanting to be responsible. Thanks for the quick response.

SueJohnson profile image
SueJohnson in reply toLineker

Naturally, Stupid doctors.

Of course 8 mg is the lowest dose so it is not surprising it is not helping much with the pain even doubled at 16 mg, You might want to switch the amounts around experimenting, taking more when the pain is worse and less when the pain is less or when you can tolerate it more.

Did you have this much pain when you were on a higher dose or pramipexole?

Lineker profile image
Lineker in reply toSueJohnson

I have to say it seems to have got worse with a weird mix of withdrawal and augmentation. High levels of anxiety are not helping. Does this make sense?

SueJohnson profile image
SueJohnson in reply toLineker

Maybe you are withdrawing too quickly. And the last few steps are the worse. Although this seems counterintuitive and I know you are probably inpatient but you might want to go back up a step. If that helps and makes your pain more bearable then you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Lapsedrunner profile image
Lapsedrunner in reply toSueJohnson

The problem with taking more at times is that you may overdose on the paracetamol component of cocodamol so this isn’t a good option. Your GP could prescribe a stronger version (there are 3 strengths) which has more codeine but the same paracetamol.

Lineker profile image
Lineker in reply toLapsedrunner

This makes sense. It may be an option my doctor is happy to go with. Thanks for the input.

SueJohnson profile image
SueJohnson in reply toLineker

In checking, the 300 mg paracetamol, I found you can take two 500 mg which is 1,000 mg so taking 3 tablets of CoCodamol would not be a problem. But of course getting the higher dose tablets from your doctor would be best, but meanwhile you could experiment.

Lineker profile image
Lineker in reply toSueJohnson

So good of you to do this research. Going to contact my doctor on Monday. Thanks as ever.

SueJohnson profile image
SueJohnson in reply toLineker

I was wrong Lapsedrunner just told me that in the UK, it contains 500 mg not 300.

SueJohnson profile image
SueJohnson in reply toLapsedrunner

Good point !

SueJohnson profile image
SueJohnson in reply toLapsedrunner

In checking, the 300 mg paracetamol, I found you can take two 500 mg which is 1,000 mg so taking 3 tablets of CoCodamol would not be a problem.

Lapsedrunner profile image
Lapsedrunner in reply toSueJohnson

I’ve just checked and in the Uk all 3 codeine strengths contain 500mg paracetamol so only 2 per dose is permissible

SueJohnson profile image
SueJohnson in reply toLapsedrunner

OK. Didn't realize it was different in different countries. I will make a note of that.

ChrisColumbus profile image
ChrisColumbus

This doesnt help you, but if your doctor has the discretion to prescribe buprenorphine I'm disappointed that he failed to provide you with at least a low dose for a limited period.

Unfortunately bup can be red listed in some NHS Trusts - meaning it either can't be prescribed or needs a consultant or specialist clinician, sometimes only supplying through a hospital pharmacy - whereas elsewhere it's down to the doctor's discretion.

In some cases it's heavily restricted for use treating opioid dependency, but less restricted for treating pain.

I do wish that we had a NATIONAL Health Service where we all got the same service!

Lineker profile image
Lineker in reply toChrisColumbus

Good point- well made. Thanks

Elisse3 profile image
Elisse3 in reply toLineker

Cocodamol is useless for withdrawals ask if you can be prescribed codeine phosphate it’s still not a strong opiate he might be more open to prescribe it for you.

Lineker profile image
Lineker in reply toElisse3

I suspected CoCodamol was no good. Thanks for the advice about Codine.

Elisse3 profile image
Elisse3 in reply toLineker

I have just been down the same road came off one 088mgs pramipexole and needed the codeine phosphate to help with the withdrawals its still not perfect but better than cocodamol and no paracetamol. I am now needing Dihydrocodeine as still getting my right leg sometimes going nuts in the night. Waiting for a home phone call this morning from my doctors for further discussion as i am getting very drowsy the next day one of the drawbacks for me. 😊

Lineker profile image
Lineker in reply toElisse3

Good luck with that phone call! And thanks for your support.

Dotmowatee profile image
Dotmowatee

My GP prescribes Targinact which is a slow release opioid. It is licensed in the UK for rls. It is extremely helpful.

Lineker profile image
Lineker in reply toDotmowatee

I’ll do some research. Thanks very much.

Cookiebum24 profile image
Cookiebum24

I feel your pain.

I’m 6 weeks into my withdrawal and had been managing my pain with codeine until the last reduction and now it’s not working.

I’ve had 4 sleepless nights and a constant pain in both my feet and lower legs however, I’ve got this far and I’m not giving up.

I plan to slow down the reduction on my final tablets like Sue has advised.

Go back to your GP with all the information from here and studies to show what medication is best. That’s what I did and my GP couldn’t argue with me.

Good luck and stay positive.

Lineker profile image
Lineker in reply toCookiebum24

Thanks for the support; it really helps.

Baz33 profile image
Baz33

I took 3 x GREEN NYTOL per night ....1 small piece of marajuana in cookie dough (never taken any drugs) ....this worked for me .I felt like I'd been run over,couldn't bend my knees to get down the stairs, I was bad for 2 weeks withdrawal, sending strength .

Lineker profile image
Lineker in reply toBaz33

Hope it’s working for you buddy. Stay strong and thanks for the support.

Baz33 profile image
Baz33 in reply toLineker

That was short term to get me through augmentation. Now I take

1 x 150mg pregabalin and 2 x magnesium citrate at bedtime.

It's a lottery to see what suits you , best wishes .

SueJohnson profile image
SueJohnson in reply toBaz33

Wow - it contains diphenhydramine (benadryl) which makes RLS worse for most but I hadn't heard of it this bad.

Baz33 profile image
Baz33 in reply toSueJohnson

The green nytol doesn't, ots valarien so no benadryl .

tagaxel profile image
tagaxel

Why are you using CoCodamol? And why would you use Buprenorphine? Are they also prescribed for RLS treatment?

Lineker profile image
Lineker in reply totagaxel

Like everyone else on this site, I’m trying to find a way forward. I’m trying to get off Pramipexole, people recommended Buprenorphine and my doctor would go as far as CoCodamol for pain relief.

Baz33 profile image
Baz33 in reply toLineker

That's all they offer in the UK, they won't offer anything else , it's unchartered territory for them , people recognise cancer/alzeimers/parkinsons ....mention rls and very few understand it.

Lineker profile image
Lineker in reply toBaz33

I fear you may be right.

SueJohnson profile image
SueJohnson in reply totagaxel

You're kidding - right?

tagaxel profile image
tagaxel in reply toSueJohnson

No, none of my doctors (addiction psychiatrist, neurologist and sleep Doctor) have ever mentioned those drugs. I personally have never heard of them. Excluding the dopamine agonists the only drugs I’m familiar with are the anti-seizure medications like gabapentin and pregabalin along with Horizant. For a long time I used a benzodiazepine but now I’m using Horizant while tapering from pramipexole. I have been warned against the use of opioids.

SueJohnson profile image
SueJohnson in reply totagaxel

The warning is because of the opioid crisis in the US. So doctors are all afraid to prescribe opioids. Yes they are used to treat RLS. Check out the Mayo Clinic Updated Algorithm on RLS which is the bible for treating RLS at Https://mayoclinicproceedings.org/a...

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