Medication in the UK

[Cailen]

Hi,

As per RLS posts I have finally got around to requesting a ferritin level check, full iron panel from my GP in the UK.

I also have changed from ropinirole to pramipexole and because that change didn't work the GP has said to double the dose of pramipexole being taken, which I will do as desperate, but not happy doing as a medium to high dose of ropinirole turned me into a zombie during the day e.g. brain fog, loss of short term memory, concentration etc.

I would also like to mention that iron and magnesium oral supplements have not worked for me, but occasionally I do get a little relief from magnesium spray on the legs, but unsure as my pain is over several hours in the evening.

Even though I have identified some triggers for my RLS e.g. alcohol, exercising or mental activity late in evening, I am yet to identify any food type that may be a trigger.

So this is my story for several years now, with my evenings, sleep quality being completely ruined by this horrible illness. I have explained to the GP in the UK about cognitive behavior, in my case over eating when I cant get to sleep as some kind of distraction from the RLS, and therefore a viscous circle of RLS and overweight.

What are the other NHS tablet treatments in the UK other than ropinirole or pramipexole, has anyone had success with acupuncture ?

regards

Colin

[Madlegs1]

Please read up on Augmentation, plenty of information on this site.

You have not been served well by your doctor. Ropinerol and Pramipexol are both extremely old-fashioned medications for RLS. Only used by cavemen medicos.

If they didn't warn you about the psychological side effects , you may have a legal case against them.

Read up any of Sue Johnson's replies to many posts on this site.

You have a long and difficult road ahead of you, but you will get through .

[SueJohnson]

You were already told that both ropinirole and pramipexole were DAs to be avoided and how to come off ropinirole and start gabapentin or pregabalin. Look back at your own posts to read up on it again. For gosh sakes don't double your dose. Don't increase it at all. To come off pramipexole reduce by half of a .125 (or .088 if that is the form yours is in) every 2 weeks.

You probably need an opioid to help you reduce. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

You also need a new doctor. If you tell us what city you are in we may be able to give you the name of a knowledgeable doctor.

How much ropinirole were you taking when you were switched to pramipexole and how much pramipexole are you taking now? It is possible you weren't given the equivalent amount in which case you do need to increase it first to get there before decreasing it.

[Cailen in reply to SueJohnson]

Hi Sue, thank you for the quick response and your advice, I live in the UK in a town called Addlestone, which is in surrey. I was on on ropinirole for years and worked down from i think 4 to 1 mg and now after GP review Pramipexole 88microgram tablets x2 and after further review told to double. But on your advice will not do this and going to ask for another review and share the information here in this thread. I would dearly love to discuss with a RLS specialist doctor if you are able to provide contact details.

[SueJohnson in reply to Cailen]

Your doctor did give you the equivalent dose of pramipexole to ropinirole.

You are not far from London so you could see Professor Walker that Joolsg recommended or Dr Novraj Dhanjal at National Hospital for Neurology and Neurosurgery or Dr Gavin Giovannoni at Barts and the London School of Medicine and Dentistry.

I know the waiting list for Professor Walker can be up to a year so you would have to see him privately and my understanding is he no longer prescribes buprenorphine which you may eventually need although he might prescribe methadone which is just as good.

Be sure on all of them that they don't prescribe the Neupro (Rotigotine) patch which is just another DA.

[Joolsg]

Oh Cailen,Why oh why didn't you follow advice given 3 years ago?

Your GP is actually making the disease much worse through his total lack of knowledge and ignorance.

Please change doctors urgently. This one has condemned you to years of severe suffering. See either Professoelr Walker at Queen Sq, Dr Robin Fackrell in Bath or Dr Chris Murphy in Salford and say you need help getting OFF dopamine agonists.

If your GP refuses to learn, you have to take control.

You will NEVER be free of RLS until you follow our advice.

I know it sounds crazy that strangers on a help forum will know more than your GP, but we do.

We have read all the latest research and evidence. We follow the top experts.

They are all very CLEAR. Once a dopamine agonist causes RLS to worsen, you HAVE to get off the poison.

In the UK, GPs aren't taught anything about RLS.

We now have hundreds of patients who have brought successful legal cases against UK GPs for failure to warn about Impulse Control Disorder. Another very common side effect of dopamine agonists.

You suffered augmentation on Ropinirole. You should have reduced and come off it. You do NOT switch to another.

Please report the worsening RLS as a side effect of Ropinirole and Pramipexole on the Yellow Card Scheme and ask for GP to be notified.

Here is the withdrawal schedule and the Iron therapy page from RLS-UK. Print out and follow the advice.

Here is a video by an expert, explaining how to get off Pramipexole.

Show both to your GP and ask him to start learning the basics of RLS.

rls-uk.org/useful-resources

youtu.be/h5Hyhmxli54?si=EFw...(Not working as expected?)

[2024LilRap]

Hi Cailen......

Pramipexole should NOT be prescribed to anyone!!! I, too, had severe problems due to that drug including addiction to eating, shopping and gambling. Not good for a person who lives in Las Vegas. I have lived here since 2001 and never had a desire to gamble. That all changed in 2017 when my GP moved me from Ropinirole (augmentation) to Pramipexole. In 2024, when I was close to a divorce, I did my own research and discovered about the awful side effects of Pramipexole. My GP didn't believe me so I started seeing a vein specialist who immediately weaned me off Pramipexole over to Gabapentin. He has also done vein ablation in both legs, which has minimized the severity of my RLS. I hope this helps. Don't hesitate to let me know if you have any questions. You're in my prayers!!!!!!

[Cailen]

Hi everyone,

Thank you for the replies, my progress is that I'm not taking either Ropinerol and Pramipexol, or any other GP medication and I'm beginning to feel somewhat better, whether psychological or physical, who knows. Certainly RLS no worse and i would say a little better, manageable, so as discussed had Ropinerol and Pramipexol become the problem not the answer. Also awaiting results of full iron panel, next week i hope, it is going to be a long haul to restore weight and fitness.

I really don't want to advise anyone as we are all different but i hope sharing does help others.

I also have what the UK NHS call limited return blood flow in my legs and suffer from swollen ankles, calf's, sometimes, but okay at the moment.

For those in the UK and perhaps reported in the USA, the British NHS is broken and even though i will discuss with my GP, I hold no expectations and the way forward now for me is diet and exercise