Please do NOT let any GP or neurologist switch you to the Neupro patch (Rotigitone). It WILL cause worse augmentation than Ropinirole or Pramipexole and the experts see it happening every day. Neurologists who do not treat thousands of RLS patients a year seem to think Neupro has less risk of augmentation. That is not the case.
How many people have posted on here that they switched to the Neupro Patch and their RLS has become worse.
I choose to follow Dr Berkowski and the overwhelming anecdotal evidence on this site. Neupro WILL cause severe worsening of RLS and getting off it will be hellish.
I am one of the many who had a miraculous ‘cure’ with the Neupro patch and 15 months later the worst torture augmentation set in and it took me nearly 5 years to escape from the horrendous symptoms and suicidal feelings.
My experience the same as Kakally's and unfortunately, I am still paying the price. I have not been near Neupro in 7 months but I truly believe it is not done with me yet.
Well done Julsg needed repeating, GPs love the patch as it’s slow release but it sets a time bomb ticking, you won’t hear it until it’s too late, I know as I was prescribed them as many have been so please resist your GPs and Neurologists.
It has to stop. Neurologists just prescribe then disappear, leaving a trail of suffering in their wake.It's why Rosie Kelly died. Her neurologist prescribed the patch & when augmentation quickly hit, he had no idea what to do. He referred her to a sleep clinic, but she died from a bleed on the brain after a fall, trying to walk, and walk while exhausted.
It’s hard not to cry all the time. I am so sorry such a simple thing it could be. It just takes coordination between the three huge corporations that run everything! Government,pharmacies and insurance companies, I wish we could have them come together to help and solve this .🥹
My neuro made me go through a list of 5 or so drugs saying if they didn't work he would 'allow' a Buprenorphine trial.
I trialed them dutifully, including the Nupro, knowing that was the path to getting Buoprenorphine.
This neurologist should know, but still would have let me carry on taking Nupro if I hadn't told him it had weird side effects. It took six months before I was prescribed Buprenorphine.
It seems to me that many of them know Buprenorphine works but they are told to prescribe only if no other choice. They are scared and feel unable to rise up and prescribe off label.
This has to change. This insidious disease needs urgent consideration. People are feeling scared and hopeless.
Keep trying everyone. Buprenorphine can be prescribed. You just need to find the right medic, and be prepared to be assertive, or get someone to help you if you can.
P. Message me if you want the name of the neuro that eventually allowed me to have them.
Tell me something, from what i have read, the treatment for Chronic RLS is to use gabapentinoids as first line and then opioids for refractory cases. DAs only for short periods and under supervision to avoid the risk of augmentation and ICDs.
I was wondering how many years or how long in general does the average RLS patient experience relief using gabapentinoids and opioids? Because of the limited ammo I fear eventual loss of efficacy followed by a life of chronic insomnia.
I understand that I am thinking too much but please allay my curiosity as I am anxious. I couldn't really find any concrete figures online.
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NTX100 Tonic Motor Activation System
help for a friend
Appointment with Robin Fackrell
UPDATE: RLS, magnesium, calcium and hard water
