I'm 72 and have had RLS most of my adult life. I went the route of dopamine agonist (ropinirole) for over 20 yrs and found out on my own that I had experienced augmentation. With the ?help of a neurologist and methadone, I tapered off the ropinirole over a 9 month period. He then wanted me to go off of the methadone. The methadone didn't help much in the tapering, it just wasn't good fit for me but he refused to change to a different opioid. When I finished the DA he wanted to decrease and eventually go off of the methadone. This where I really began to doubt him as after the tapering, I of course still had RLS and other chronic pain issues. I switched over to a pain clinic and they tapered me off of methadone and onto oxycodone 5mg up to 4 times per day. It didn't cut it, it was the immediate release so I had peaks and valleys throughout the day. Without sounding like a drug seeker, I explained in detail what I was experiencing in the way of pain. Whenever I had an appt with one of them, I read the summary of the appt. I found they never mentioned the RLS as a pain source, only the low back and down to my R foot. I don't believe they recognised RLS as being real. Finally after a year with them and much deterioration physically and mentally, I had a consult with another physician in my main clinic, as recommended by the PA I usually saw. He has a special interest in pain control and has an open mind about different meds. He started the process of switching me from the oxycodone to buprenorphine patches, starting at the 10mcg dose. I thought it was rather expensive when I picked it up at the pharmacy but I decided it could be worth it. Now I'm up to the 20mcg patch. I went from 10mcg at ~$30/ patch to 15mcg at ~$60/ patch to now the 20mcg patch at $125/week. I almost fainted. Insurance coverage was minimal. I'm the US, I'm wondering what other folks are paying? I think this may be a positive direction to go except for the price. It been such a rocky journey with chronic pain and RLS, I don't know if my thinking is good, it's like, should I accept this, or should I ask about a different avenue for pain control or should I just suffer? Sorry this is so lengthy but I would just like some feedback from others who may have been down this avenue. Thank you
Can I Afford To Treat My RLS? - Restless Legs Syn...
Can I Afford To Treat My RLS?
Why not two 10 mg patches at $30 each or would the lack of insurance for the second patch still make that too expensive.
This sounds helpful if manageable cost-wise.
I just wonder if it may work better for you if you used 2 lower dose patches , but one placed on a e.g. Saturday and the other on Tuesday.
That is what I do as the patches often don’t last 7 days as they are supposed to do. You might find the overall effect is more even over the week with the little boost halfway through ..
It certainly works well for me.
Good luck 🤗
This why I asked for input. Kakally, that's a great idea as I've been plagued by that down time when the patch is changed. Definitely on my list of questions for my next visit with my MD. Thank you.
My doc didn’t really like or approve of the idea, though I don’t see why not. It’s not that I want (nor you) a higher dose of drug but just spread out a bit better 🤞🤞🤞🥰
See, this is why I'm asking for input. After posting what I wrote, later that came to me also, 2-10mcg patches! It will be on my list of questions for my MD next visit, he is very open to ideas. Thank you.
Good luck 🤗
That's why I've asked for input, I was hoping for good advice like this. I thought of the 2 patch idea shortly after I made the post. Kakally added more to the 2 patch idea. Thank you.
I live in Florida and use Suboxone in 2 mg straps (Buprenorphine). I augmented after 17 years of Pramaprexol. I cut the strip into fourths, and take one piece 2 hours before bed.
I don't have the best insurance, but I pay nothing for my prescription. Ask to change to Suboxone. It works perfectly.
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I have looked into the oral strips and because I have an extremely dry mouth with mouth soreness, it doesn't seem to be the route to go. Thank you.
Adding to SteveWess' comment - the patch costs a lot more than the suboxone strips in the US. I would definitely suggest asking your doctor to let you try that. The 20mcg patch should be roughly equivalent to 1mg or so - so 1/2 of a 2mg Suboxone strip (usually an hour or so before bedtime). But I would suggest starting lower and increase if needed. The strips are easy to cut with a razor blade, so you can experiment all you want to find the optimal dose. And they take effect within 30 minutes generally, so it's easy to add more when you need it. Most of us seek the lowest dose that provides complete RLS relief in order to minimize side effects. If you have daytime RLS symptoms (for instance, if you take an afternoon nap), then you may need to take some during the day as well. Once you have been on buprenorphine for a while, its effective life seems to be roughly 12 hours.
As I replied to SteveWess, I have an extremely dry mouth with soreness, so I'm not sure this would be the route to go. Thank you for your reply.
Have you co sidered the sublingual tablets? They are way less expensive, although more work than putting on a patch and going on your way. Either way, it may still be difficult to get insurance coverage because of the off label use
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Help from those taking Methadone
Methadone
New rls ideas from my dr.
Oxycodone/Naloxone
