Transitioning off Rotigotine without opioids
Posted: Mon Apr 03, 2023 4:06 pm
Hello,
I would like to connect with others who are transitioning off Rotigotine without the use of opioids, especially anyone who has completed this process successfully.What have you found works well? What challenges have you had?
I had RLS very infrequently since I was a child and then it gradually got worse through my 30's, 40's and 50's. It became much worse in 2017-18 after a period of high stress/life crisis, increased caffeine usage. I went on Pramipexole in 2018 and then switched to Rotigotine in 2020 due to augmentation. I am on a 2mg dose of Rotigotine currently and am in the process of transitioning off it completely by maintaining good iron/ferritin levels (100 ng/mL) and Vit D (7,000 IU/day) and managing my diet (only organic whole foods free of pesticides, avoiding all preservatives and all foods high in glutamate, especially tomatoes, soy sauce, avoid high salt, etc.). My RLS doctor has told me he has patients who have successfully gotten off rotigotine by tapering down dose very gradually over a 3-6 month period, which has involved prescribing 60 1 mg patches so they can be interspersed, spreading out application time period and thereby reducing dosage, riding through worse symptoms for 4-11 days, then once stabilized, reducing dosage slightly again. I am on day 15 of this process and have reduced my dosage from 2 mg to 1.75 mg so far. I have highly adverse reaction to opioids so cannot use them for transition. Some increased symptoms and loss of sleep but still manageable and I'm pleased with my progess so far. My main challenge currently is managing the gradual spacing out of the two 1 mg patches. I've developed a spreadsheet that is working pretty well, but it's a bit complicated to manage and I find my ability to do math is impacted when I'm sleep deprived is making it more challenging. I have two patches that I alternate, taking each one 27 hours after the prior one to give me @1.75 mg/24 hours, currently and then will drop the dosage again.
I would like to connect with others who are transitioning off Rotigotine without the use of opioids, especially anyone who has completed this process successfully.What have you found works well? What challenges have you had?
I had RLS very infrequently since I was a child and then it gradually got worse through my 30's, 40's and 50's. It became much worse in 2017-18 after a period of high stress/life crisis, increased caffeine usage. I went on Pramipexole in 2018 and then switched to Rotigotine in 2020 due to augmentation. I am on a 2mg dose of Rotigotine currently and am in the process of transitioning off it completely by maintaining good iron/ferritin levels (100 ng/mL) and Vit D (7,000 IU/day) and managing my diet (only organic whole foods free of pesticides, avoiding all preservatives and all foods high in glutamate, especially tomatoes, soy sauce, avoid high salt, etc.). My RLS doctor has told me he has patients who have successfully gotten off rotigotine by tapering down dose very gradually over a 3-6 month period, which has involved prescribing 60 1 mg patches so they can be interspersed, spreading out application time period and thereby reducing dosage, riding through worse symptoms for 4-11 days, then once stabilized, reducing dosage slightly again. I am on day 15 of this process and have reduced my dosage from 2 mg to 1.75 mg so far. I have highly adverse reaction to opioids so cannot use them for transition. Some increased symptoms and loss of sleep but still manageable and I'm pleased with my progess so far. My main challenge currently is managing the gradual spacing out of the two 1 mg patches. I've developed a spreadsheet that is working pretty well, but it's a bit complicated to manage and I find my ability to do math is impacted when I'm sleep deprived is making it more challenging. I have two patches that I alternate, taking each one 27 hours after the prior one to give me @1.75 mg/24 hours, currently and then will drop the dosage again.