Hi All.
I am very anxious at the moment as the NHS have a drive to get people off targinact 10/5 mg which has been a miracle worker for me. Also on a 2 mg rotigitine patch. Not sure what to expect when coming off and been given gabepentim to try.
Tried pregabelim but was a shocker for side effects. Was like a zombie. Been on ropinorole but started to become ineffective.
Going to start next week but fearful of turmoil I may encounter
1. I haven't seen latest guidance, but know that doctors have been discouraged from prescribing Targinact because of " higher cost " and "Lack of evidence to suggest oxycodone plus naloxone has any clinical advantages over oxycodone or morphine sulfate plus laxative." Have you been offered alternatives?
2. If you can't tolerate Pregabalin (Alzain, Axalid, Lyrica) after trying for a week or so you may be OK with Gabapentin (Neurontin). While they're both Gabapentin the different dosages/delivery systems can have different side effects.
Joolsg may have better UK recommendations
Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a... and copy the section on opioids to show your doctor that they are effective and safe. I'm a little confused on whether you are currently on the rotigitine patch or ropinirole or both? If ropinirole is in the past and you are currently on the patch, there is an excellent chance it too will become ineffective - ie you will experience augmentation. If that happens, post back here and we can give you some advice.
Hi Gaz,
Looking at your previous post, you were on 6mg of the Neupro patch and have been on it for years. You were also on Ropinirole.
You mention it stopped working.
Has your GP discussed Augmentation with you?
The Neupro patch, Pramipexole and Ropinirole all cause a drug induced worsening of RLS. They 'pour gasoline on the fire'. The only solution is to reduce and get off all dopamine agonists.
You should seriously consider getting off the patch very slowly by cutting a 1mg patch into quarters and dropping 0.25mg every 2 weeks. The severity of your RLS will reduce about 2 weeks after the last dose.
Read the pinned post on augmentation and the RLS UK website
You have added 10mg Targinact which is mentioned in NICE guidance for RLS. Link below. However, certain local clinical groups are trying to stop prescribing Targinact. I'm not sure if it's a cost issue. Targinact is Oxycontin with added Naloxone to prevent constipation. It could be possible that your surgery are trying to switch you to cheaper Oxycontin. Can you ask them to clarify and consider switching you to the cheaper Oxycontin? It will work the same way. You can take magnesium citrate or senna for any opioid induced constipation.
You should also insist on full panel fasting blood tests and raise serum ferritin above 100, preferably 200 as that helps many RLS patients.
As for pregabalin and gabapentin, you say you had side effects with pregabalin and felt like a zombie.
Most RLS patients only need to take pregabalin at night as that's when RLS affects us most. Taking at night can reduce the daytime drowsiness. The side effects definitely settle after 2 months so you do have to try it for at least 2 months.
Please spend a few hours reading all the posts on here, particularly those about Pramipexole or Ropinirole and you'll see augmentation is very common. Most people will experience it.
Opioids are very good at controlling RLS, especially if you cannot tolerate pregabalin or gabapentin.
The only problem is UK doctors are not taught about the disease and the NHS and NICE guidelines are already outdated. GPs are reluctant to prescribe opioids off licence if the NICE guidance doesn't back them up.
You may have to see a neurologist to get Oxycontin or an alternative low dose opioid.
But please do consider getting off the Neupro patch.
Hi Everyone
I just wanted to thank you all for your help and guidance as it is extremely helpful. I am now on gabepentem 3 x daily and reduced my oxycodone down by 50 percent with no real issues up to now. Still on 2 mg neupro patch which I will try and reduce in the coming months as per your recommendations. I’m hoping by Xmas I will be off the opiod and just on my new meds plus patch and take from there.
I was really worried coming off a med that was brilliant at managing my rls and still am but taking it steady.
Thank again. Let’s see how it goes.
well as I feared. I’m down to one targinact a day and rls are back as well as in my hand. Not happy. I am still on 300mg of pregabalin 3 times per day. Plus 2mg neupro patch. ( which I will at some point reduce) At Gp’s tomorrow and going to ask some questions that you good people have posed and insist on a referral again to a neurologist.
coming off Pramipexole 
Coming off pramipexole
coming off ropinirole after augmentation
Coming off Mirapex 
RLS Targinact & Pregabalin
