RestlessNan wrote: ↑Thu Jan 04, 2024 11:58 pm
HELP! What should I do? Folks, I need feed back. Will I be on Neupro for life and drain my resources? Is there an alternative. I need input.
Hello, I am so sorry to hear what you are going through! I have been there and understand what it is you are going through and the tough road you have been on.
You asked for feedback and here is mind, I would suggest stopping the Neupro, you will eventually augment on it and have to ween off it. Also, if you are anything like me, your body is already used to the medication and it will want more of it sooner rather than later. When I switched to Nuepro, I was tramadol and had augmented, I went from the lowest dose patch 2 or 3 mg to the highest dose in 6 months. Stop now.... I was on Mirapex 5-8 years earlier, before the tramadol, and my body just knew and it adjusted to the Nuepro right away and just wanted more and more of it. I don't know if it is just me, or if everyone adjusts to DA's the same way, but don't take a chance.
I am now taking 4 each - 5mg instant release oxys during the day and 1 each - 10 mg extended release 0xy at night and that seems to help. I still have some breakthroughs and am going to ask my neurologist to up my dose of instant release to 7.5 or 10mgs and add one more pill to my regimen.
Also, if you can get into one of the Quality Centers and find a doctor who knows about RLS and listens to you, that is your best chance at finding a way to manage this disease. There is not a Center in NY but I did find a good doctor from the list, I was going to go to the one in Pennsylvania, I actually had an appointment but was able to get into the Albany Movements Center faster and this doctor has been working out well for me. My new doctor, though she does use the portal, I send her messages and she gets back to me right away. She listens to me and doesn't judge me. I feel like a patient who has a disease that is recognized like asthma or arthritis. I am not brushed off, I feel seen for the first time in a long time with this disease. And she listens to me about what I would like to try when it comes to my meditation and other things. I mentioned my iron and she ran an iron panel for me. Like I said it just feels good to be heard.
Good luck I hope you find the medications and a doctor who knows more and has compassion that will work for you and with you! Lissa