GP Conversation today to come off Roprinerole

[coopsgatsby]

I have been building up to come off Roprinerole (by building up ,I mean investigating about what alternatives are and withdrawal etc.)

These are my doctors notes from that conversation toady

Grove Surgery (General Practice) - Dr Gordon Irvine (Clinical Practitioner Access Role)

Note - Problem: Restless legs (F13z2); History: Telephone call to patient who it seems wishes to cease her ropinirole as she is concerned about potential worsening of the situation and the long term effects. She has already done her own research and wishes to trial gabapentin instead. I have advised that this is not its intended use nor licence however I am more than happy for her to try it. In order to reduce her ropinirole she should decrease by 500 micrograms every 10 days to 14 days until ceased and then commence the gabapentin at 100 mg. This may need increasing thereafter. She has asked about the use of codeine which she has read can be used as a bridge whilst reducing her ropinirole. I have advised I am happy for her to have this for a short period of time obviously.

Medication - Codeine 30mg tablets - 56 tablet - take one tablet up to four times a day if required for pain (SHORT TERM USE ADVISED)

Medication - Gabapentin 100mg capsules - 100 capsule - take one three times daily

Medication - (R) Ropinirole 1mg tablets - 28 tablet - 1.5mg per day

Medication - (R) Ropinirole 500microgram tablets - 28 tablet - 1.5mg per day

I was horrified at his total lack of knowledge with regard to RLS and all the time I was leading the conversation with my research.He said Gabapentin is prescribed for pain. He did not seem interested in investigating anything himself all he said was 'I am unaware of this 'when I put a query to him or told him about the horrendous withdrawal symptoms.He was SO blasé about it.I left the conversation saying if I have any problems with what you have said I will get back to you.He agreed.

Thank goodness for THIS FORUM !!!!

I am still extremely apprehensive regarding my next part of the Roprinerole withdrawal, but I do not want to stay on it

[Joolsg]

Today is really showing up UK doctors' total ignorance and lack of knowledge.I suggest you print off Iron therapy and Withdrawal schedule from Useful Resources and show to your GP.

Gabapentin and pregabalin are now first line treatment by UK experts as set out in the new NICE cks guidance.

Show that to your GP and educate him.

Gabapentin at 100mg x 3 is a waste of space!.

Gabapentin should be given at NIGHT only. RLS follows the dopamine cycle and is worse between 6pm at night and 6am next morning. So you take it at night in spilt 600mg doses 2 hours apart. But it will not help until around 4 weeks after last Ropinirole dose.

So go back.

Ask for a supply of 0.25mg Ropinirole so you can reduce by 0.25mg every 2 weeks.

And he will need to prescribe 900mg gabapentin to start around 4 weeks before your last dose of Ropinirole. Start at 300mg and increase by 100mg every other day up to 900mg. Take 300mg 4 hours before bed. 600mg 2 hours before bed.

The codeine will help after each dose reduction.

The RCGPs told the BBC by email and the Chair of RLS-UK last week that they would require all GPs to learn about RLS from August 25. So tell your GP you are educating him now. He should start by reading the RLS-UK website and the new NICE cks guidance.

Honestly! It's shameful.

[ChrisColumbus in reply to Joolsg]

I know this doctor hasn't read the new guidance anyway, but if only we could also get NICE to correct the CKS again to move away from "CKS did not identify any specific guidance on dose titration for use in RLS. However, for other indications it is recommended that gabapentin therapy is initiated at 300 mg once daily on day one, twice daily on day two, and three times daily on day three, followed by further increases in 300 mg/day increments every 2–3 days to the maximum dose if required." (Also pregabalin of course).

[Joolsg in reply to ChrisColumbus]

It is now the number 1 priority. To get official NICE guidelines (as opposed to the less effective cks guidance).

Political lobbying is happening to achieve this.

[SueJohnson in reply to ChrisColumbus]

And of course that is the wrong guidance on gabapentin.

[ChrisColumbus in reply to SueJohnson]

That's why I say "get NICE to correct..."

Like Emma's doctor, NICE still doesn't really understand the difference between RLS and neuropathic pain (or indeed Acquired Metastructural Pediculosis, or even Black Trump Virus)

[coopsgatsby in reply to Joolsg]

Thank you Joolsg , you are a true advocate for all of us . Your information and others is what helps us all , for sure .

I’ll go back to him , if I can get through to him. He honestly sounded like he was on a time limiter with our conversation, so frustrating!!

[SueJohnson]

I agree 100% with Joolsg. Let me repeat a lot of what she said but add some things. I gave you this before but it has been awhile so thought it won't hurt to repeat it.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. The codeine should help. But in the long run, you will be glad you came off it.

On the gabapentin the beginning dose is usually 300 mg gabapentin . Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg ( every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason .

Gabapentin is used for pain and for that use it is prescribed 3 times a day. It is used off label for RLS and only taken at night as that is when our RLS is.

Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

[coopsgatsby in reply to SueJohnson]

Thank you so much Sue for your response. Yes you have replied to me before , but, as I am just at the start of my changes and GP interactions I appreciate the refresh of your knowledge passed back to me again as there is a lot to understand/take in !

Many thanks

Emma

[LondonGir]

Hello there

I gradually weaned off Ropinirole due to augmentation and Impulse Control Disorder, following Sue Johnson’s advice to reduce the dose by 0.25mg every 7-10 days (sometimes adjusting by 0.125mg when needed). Starting at 3.5mg in December, I have reached 0.25mg now by late March, with one week left to stop completely. Codeine was essential in managing withdrawal symptoms, my GP was initially reluctant to prescribe it. After presenting guidelines from the Mayo Clinic and RLS-UK, which is found on this website, my GP agreed, making the process more manageable despite its challenges.

Good Luck...