ropinirole withdrawal

[Daisysparkle]

Hello. I’m feeling annoyed this morning about being prescribed Ropinirole. I’ve only been on 1mg for 6 months with augmentation in the day but was just told to increase the dose. Im so glad I didn’t. Anyway, I’ve stated re-reducing my dose. Dropped to 0.750mg a few weeks ago and now Im down to 0.375mg. Last night I had so bad pain. It felt like my toes, hands and legs were broken 😡. Took ibuprofen that helped a little then paracetamol, and then had the restless legs and right arm. I’m on 300mg gabapentin. The advice I’ve been given on here is to wait till symptoms settle then reduce further. I’m thinking what will happen if I just reduced a little every couple of nights🤔. I just want this horrible medication out my system. My doctor didn’t even know you had to taper off them and you get withdrawal symptoms 😡

[Madlegs1]

How fast you go depends on how much discomfort you are able to tolerate.

You could go cold turkey and have terrible consequences - but accept that.

Or you can let your body dictate the rate-- go slow and have holidays from the going down stuff.

Having opioids to help with coping is a huge help, but most doctors are completely ignorant of the horrible effects of withdrawals. As you have discovered.

Basically-- it's a matter of whatever you can cope with, and the help you can get.

Good luck.

[Daisysparkle in reply to Madlegs1]

Hi. Yes I think you are right. Listen to your body but I can be very impatient🙈. I think I won’t reduce tonight. But not sure if to then reduce a tiny bit each night 🤔

[Joolsg]

The RLS-UK website explains it. It's under 'Useful resources'.If you're fit and healthy and feel you can go more quickly, then try it. Dr Chris Earley at Johns Hopkins makes all RLS patients withdraw in 3 weeks on the basis it will be hellish whichever way you do it.

Bear in mind that the 2 weeks after you stop Ropinirole completely will be hellish. The withdrawal schedule tells you what to expect. So cancel all work/social events as you will get little to no sleep and extremely severe RLS.

[Daisysparkle in reply to Joolsg]

Hi. I think it’s hellish now and I still have the 2 weeks after I have stopped completely to go through 😫

[Joolsg in reply to Daisysparkle]

If you are generally fit and healthy, then yes, just stop the 0.375mg. As you were only taking it for 6 months - and you're at 0.375mg.Increase the gabapentin by 100mg every night up to 900mg and stay on that dose until the 2 weeks withdrawal are over.

Then you can see what the symptoms are like and you can increase the gabapentin slowly again.

[Daisysparkle in reply to Joolsg]

The Dr only gave me enough for 300mg of Gabapentin a day till I go back to see her next Wednesday. I think she will only double it but I will ask for more. I don’t have any other health conditions. Thank you

[SueJohnson]

I would try to hold back your impatience but as others have said it is what you can cope with. If you are going to reduce at less than a half tablet which you can use a pill cutter for, I would suggest you get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount at the rate you want.

[Daisysparkle in reply to SueJohnson]

Hi. We have got a pill cutter. Will use this but will give tonight a miss I think.

[RLSAndy]

Hey - im in the same boat, im down to 0.25 from 4 it’s been five days now and although no pain my legs are the worst ever im averaging around 4/5 hour sleep and just opened a restaurant working 14 hour days on top of weight training/body building which i refuse to stop as its my passion. I know i have to keep going but it’s absolute hell right now.

Joolsg im on 450 pregabalin and have access to 30mg codeines any advice on how to maximise these to get me through these last stages of getting off the DAs please 🙏🏻

[Munroist in reply to RLSAndy]

Well done on reducing this far, just hang in there. I can understand you don’t want to let up on the training but it might help to reduce the symptoms during this difficult phase. Detraining doesn’t happen immediately and rest and recovery are a really important part of progress. I’m sure you know that but looking at what you are saying, you are going through a lot which is unfortunately normal when coming off DAs and temporarily reducing the training seems to be the easiest way to make things a little easier. This phase of withdrawal should get easier so it’s not for ever. I’m a keen cyclist and walker and like to push hard on hills and I know there will be consequences after a hard day. However I’ve learned to take more breaks and bigger gaps between sessions so my sleep doesn’t suffer too much.

[Joolsg in reply to RLSAndy]

Well done for getting this far.How you are still working during DA withdrawal is beyond me! That is a super hero achievement.

Most people have to take 2 to 3 weeks off work.

Dr Buchfuhrer answered my emails while I was going through Ropinirole withdrawal and he said to take 50mg tramadol every 4 hours during the worst nights.

So you could take 30mg codeine every 4 hours or ask for tramadol or oxycodone.

The 2 weeks after you drop that last 0.25mg are the worst. Every dopamine receptor in your body will scream out for its dopamine hit.

The weight training will actually help as dopamine is stored in muscles.

I also used cannabis during the 2 weeks after dropping the last dose. It allowed me 20 to 30 minutes sleep after 4 days of zero rest.

Can you take 4 to 5 days off after the last dose? That's when it becomes hellish.

No point increasing pregabalin. You're on the max dose and pregabalin doesn't cover the RLS fully until about a month after the last dose of Ropinirole.

And please file a YellowCard Scheme report about augmentation.

Unless we ALL do this, doctors will keep prescribing this poison.

They never help patients get off the stuff!

yellowcard.mhra.gov.uk/

[RLSAndy in reply to Joolsg]

Thank you, i have just opened a restaurant so absolutely no chance on any time off. After much reading i decided to take the day plunge and stop the ropinirole all together, im so so so beyond sick of that vile drug. Im three nights in and actually getting 7/8 hours but know when im back in work it will get hard, but I know im strong and in a months time i should be clear then if ive made a unbearable mistake i can go up .25 or what ever. Im using cannabis oil with better results and also took magic mushroom caps Sunday which helped me sleep. Ill report back soon.

[Joolsg in reply to RLSAndy]

That is very brave and it sounds promising so far!I wish you strength.

Once off the poison, you can help spread the word to stop others suffering the same fate.

The doctors just won't listen.

They keep telling patients that augmentation is rare /won't happen on low dose/ won't happen on Rotigitone patch. It's all rubbish.

The US experts are clear. Everyone will eventually experience augmentation. It's simply a matter of WHEN, not IF.

You can file a report via the Yellow Card Scheme and write a letter to your GP explaining how bad the augmentation was and that the new AASM has relegated all dopamine agonists to 'NOT RECOMMENDED' and to be used where short term benefits outweigh inevitable long term complications( in other words, end of life scenarios).

See the Pinned Post for Yellow Card notifications.

[SueJohnson in reply to RLSAndy]

Did Dr Bagery prescribe temgesic which will help you get off that last .25 mg - if not ask him to.

[Maystamper1]

get off that med asap! It ruined my life by giving me a gambling addiction. I was crazy on the drug and lost many friends and my family was overwhelmed with my actions. No one could believe that a pill can cause all of this! There were lawsuits against the company but they covered their butt by putting side effects in their literature! I spent over $200,00 and could not stop! My RLS was not any better. I went off the drug in one month. I take a small does of pregabinal and my restless legs that have plagued me for over 20 years disappeared! Unbelievable!

[Joolsg in reply to Maystamper1]

I'm so sorry to hear this, but not surprised. That is very common. Studies show up to 38% are affected by ICD but the numbers are probably much higher because doctors and patients don't make the link to DAs initially and then fail to report it via FDA adverse effects or UK Yellow Card Scheme.I met a woman who had gambled over $2 million. She won back $1 million but lost the rest!

Here in the UK we can sue the medics that prescribed the poison. If any UK doctor prescribes a DA and doesn't expressly warn about ICD, they can be sued for negligence.

There have been hundreds of successful cases so far and there will probably be a TV drama documentary about it soon.