New-Asked to post about treatments

[Rustsmith]

I should have gone to a Quality Care Center but the nearest one is over 2 hours away-how do you sit in the car that long?

You definitely need to see a different doctor. This one is both arrogant and ill informed, a dangerous combination.

Although the Foundation's Quality Care Centers all provide top tier care, there are other alternatives. If you are a Foundation member, check out my Nightwalkers article on suggested ways to find a knowledgeable RLS doctor. You can find it in the Spring 2018 edition on Page 12. As for me, I would have to fly about two hours to get to any of three different Quality Care Clinics, but did the footwork required to find my own "expert".

[IndyRPh]

Thank you for your response, Polar Bear.
My ferritin came back with a level of 105. I have tried Gabapentin in the past and I could not tolerate it.
The doctor I made the appointment with supposedly had experience with RLS but when I got to the appointment I was seen by a different doctor who obviously is not up to date on current treatments.
This was at a movement disorders clinic at a major teaching hospital.
I’m a pharmacist (retired now) but I’d like to think I know a thing or two about dopamine agonists.
I will check out the Nightwalkers article as recommended by Rustsmith and cancel my follow up appointment with this neurologist.

[Polar Bear]

Dreadful that this was at a Movement Disorders Clinic. Isn't it just as well you were aware of the issues surrounding her suggestions.
Some of us have managed to educate our GPs but you have to have a doctor who is willing to learn.
I wish you well in your search for a knowledgeable doctor.

[RestlessNan]

I'm back after what seems like a very long forever. I started weaning off of ropinerole in about mid July 2023. I had a false start after trying to start the course without a long acting opioid like Oxycontin. No Oxycontin due to insurance denying coverage. About mid August, the plan was changed to Oxycodone, but with the ability to take it more often. I was starting to wean at ropinerole 12mg daily, divided in 3 doses. I was also prescribed gabapentin,an Iron and Vit c supplement (my iron was slightly low), I was already on lorazepam .5 to 1mg daily, and Robaxin 750 tab 1/2 for muscle spasms. Plus blood pressure meds, Crestor for elevated lipids; Vit D and Calcium. I felt a good plan was layed out to do a gradually weaning process by decreasing about 2mg Ropinerole/wk. I was confident in the doctor's knowledge and his ability to support me through this weaning process. I will continue this description in another post to allow myself a chance to compose this better. See you in a few days.

[ViewsAskew]

I'm back after what seems like a very long forever. I started weaning off of ropinerole in about mid July 2023. I had a false start after trying to start the course without a long acting opioid like Oxycontin. No Oxycontin due to insurance denying coverage. About mid August, the plan was changed to Oxycodone, but with the ability to take it more often. I was starting to wean at ropinerole 12mg daily, divided in 3 doses. I was also prescribed gabapentin,an Iron and Vit c supplement (my iron was slightly low), I was already on lorazepam .5 to 1mg daily, and Robaxin 750 tab 1/2 for muscle spasms. Plus blood pressure meds, Crestor for elevated lipids; Vit D and Calcium. I felt a good plan was layed out to do a gradually weaning process by decreasing about 2mg Ropinerole/wk. I was confident in the doctor's knowledge and his ability to support me through this weaning process. I will continue this description in another post to allow myself a chance to compose this better. See you in a few days.

I pay out of pocket for my methadone. It's about $25 a month - wish insurance would cover it, of course, but glad I can get it and afford it.

[RestlessNan]

I wander away and eventually get back to this board. There have been many ups and downs since starting to wean off of the ropinerole in July. The ups and downs haven't necessarilry been related to the weaning but to other event in life. I am pleased to announce that I am down to 1mg of ropinerole/day. I should be at 0.5mg/day but I've been more reluctant to step down to that 0.5mg than I was to the rest of the increments, approximately 1-2mg per week. During those weeks, I would go several nights in a row without any breakthrough and then suddenly it would rear its ugly head and I'd go backward for a night or 2, and analyze what I may have done differently. Usually there was no explanation. I am using gabapentin 300mg in the morning and bedtime. The side of effects of that, some staggering, goofy thinking, loss of words, memory problems have very gradually improved. I've tried to hang in there with it as there aren't many other meds to supplement the weaning off of ropinerole besides the methadone. I use 5mg in the early evening and 10mg with the ropinerole 1mg late evening, as well as methocarbam 375mg.and iron with vit c. A few weeks ago, I had a bout of akathisia. I don't know exactly why, it's hard to explain why it happened, and I didn't receive a syportive diagnosis from my provider. I just couldn''t quit moving, the more I moved the more I felt I had to move. I went to ER early in the morning and it was full. I waited there about 4 hours and decided I could deal with it better if I were allowed to move more freely. After about 48 hours it went away. I haven't had anything like it before or since.Without having done a bit of psych nursing, I wouldn't be familiar with it. Now I'm at the point of being ready to pull the cord on the last milligram of ropinerole but I'm pretty reluctant to go all the way.. I have to say that as knowledgible as the neurologist is in weaning me off of the ropinerole and being saavy regarding augmentation, there has been a lack of support on a frequent basis. i've had to reach out and wait for him to get back to me via the patient portal and then him to get back to me in his time and perhaps me again through his assistant who is not knowlegeble. But, I'm almost there. It has been far from easy. If you''re in the throes of this process, I ache for you. I''ll be back as my story isn't complete, stay tuned.

[Polar Bear]

You have made wonderful progress as you wean off the ropinerole. Well done.
Thank you for your update. Such information in encouraging to others in the throes of augmentation and we look forward to your further updates.

[RestlessNan]

I have much good to say since I was here last. I know my progress is something to write home about but it was fraught with many difficulties as far as getting answers and support from the neurologist. This is where I failed to asked the right questions with my first visit. For anyone newly starting down this road of weaning off of ropinirole, tale care of yourself by formulating "interview questions", like how many patients have you seen with RLS who are experiencing augmentation? Do you follow a protocol for weaning that allows for adjustments for individuals? How to you provide for support in between face to face visits. Do you have some who works with you so that urgent questions can be handled in a timely manner in your absence. I had some rather nightmarish situations for example: I went on a narcotic to use in conjunction with the tapering, 7 days into the prescribed dose, it needed to be increased, therefore I went through the prescription faster than the amount dispensed, I called the pharmacy in advance, they were, "no, it's too soon for a refill", I'm like but the dosage increased so I used them faster", they, "have the Dr. call us". He did (supposedly). I called the pharmacy again, no it was too soon, me I thought that was taken care of, finally it was worked out when I was down to one tablet. Then doggone it, it happened again with the new prescription, then worked out at the last minute. I never anticipated that problem. There have been glitches that an assistant well versed in this type of a practice should have anticipated and been able to deal with appropriately in a timely manner. I worked with team approaches in various areas of nursing prior to his, everyone is happier and better cared for. Most communication is through "text" messages through the patient portal of most different types of practices. It limits your message to a certain number of characters, as you see, I'm pretty wordy. This hasn't been working, so I resorted to writing a letter in lieu of my last let 'um know how I'm doing in a couple of weeks. This, required too much of a reply, I was given an appointment, which is coming up. I have a question for anyone, Have you ever been dealing with restless legs that may be sciatica? This is a long term problem and it usually flairs in the evenings, it's relieved by ropineril, narcotics and muscle relaxants, but it's somehow different, more severe than RLS. It's breaking through the RLS med, of which I'm down to 1mg at bedtime. Help!! Feed back. Too much information? Am i helping or hurting you youngun's?

[Polar Bear]

Your pre interview question list is excellent.
I have daily occurring pain which may or not be sciatica. An MRI shows narrowing of the spinal column and nerve compression and I am on a very long UK NHS waiting list to attend a pain clinic. There is no indication at present for any surgical intervention. My go to is ibuprofen although I do try to avoid it. My movement disorder consultant feels that back conditions contribute to RLS. My RLS medications are cocodamol and pregabalin, neither of which greatly help with the hip pain.

[Rustsmith]

When I was a competitive runner, I would often end up with sciatica in my left leg. The challenge of sciatica is that there are a number of things that can cause irritation of the sciatic nerve. In Polar Bear's case, it sounds like a spinal issue. In my case, it apparently was due to the sciatic nerve passing through the periformis muscle in my butt (this doesn't happen with everyone). I was "fortunate" in that regard because I was able to end up getting relief by doing nightly periformis muscle stretches and by moving my wallet out of my back pocket while I was in the car (until the nerve issue went away). I don't remember the other causes, but I remember that when I was researching sciatica, there are severe other causes. Therefore, for a doctor, it is a matter of experimentation to try to find something that helps reduce the pain. If they don't get it right on the first guess, that can mean months of excruciating pain between appointments with no relief until they hopefully find that magic bullet.

[tagalongbuddy]

I too weaned myself off ropinorole.The neurologist had me slowly titrate down and then he started me on gabapentin, adding it to a higher dose.
300 mg am, 600 mg (suppertime) then 45 minutes before bedtime 1,200 mg. for the first time in years I started getting some sleep. Of course, I could not take the dosages at night and go drive because it would make me a little lala.
There is always a reason for sciatica, something in the spine is pressing that major nerve. In 2012, the neurosurgeon did a laminectomy which helped alot and he also did a L4-L5 fusion (to stop the curvature) But with the arthritis in my back and getting older there is always issues. I have osteoarthritis in most of my joints. Have a nice Thanksgiving.

[RestlessNan]

Is it already 2024? I have to say, that 2023 lasted a long time. It was a year which I spent part of weaning off of a drug that I'd been on long-term, at a high dose, that created augmentation of RLS symptoms so that I was eventually worse off for having been on it and coming off of it created more pain, more insomnia, more symptoms than I could ever imagine. It was like I experienced side effects coming down from the drug as it was in fast motion compared to going up over years of gradual increase. I know what I mean, and it's hard to explain. But, there's Good News/Bad News involved in this transformation. Good News: ropinirole 1mg vs 12mg/day; Neupro 2mg patch was started and seems to be working fairly well; Methadone 5-15mg daily is working fairly well for residual RLS pain. Bad News: I'm not at ropinirole 0mg; Neupro patches are $600/mo after fighting with the insurance company for some coverage (I'm not eligible to coupons or other saving as I'm on medicare); I have chronic other pain that the neurologist isn't recognizing and 3-5mg methadone tablets don't alway cover it, my PCP doesn't want to get involved as long as one provider is prescribing opioids. It's all hard to wrap my head around. We tried adding Neurontin at various doses but I didn't tolerate it, I was talking and walking loopy, etc. I think the neurologist is tired of my "interesting additional symptoms" I experienced and didn't know what to do about during the active weaning process. I'm finding him to be somewhat inadequate. And the sciatic type symptoms seem to raising their ugly head on a regular basis. 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.

[Rustsmith]

Folks, I need feed back. Will I be on Neupro for life and drain my resources? Is there an alternative. I need input.

You sound like a prime candidate for a trip to one of the RLS Quality Care Clinics. It sounds like your neurologist is knowledgeable, but doesn't seem to have my in the way of bedside manner or compassion. Many of us have had to travel in order to get started on changes to our care once we augmented. Your neurologist seems to have a bit of an idea of what is needed, but the fact that you were put on Neupro indicated that (s)he isn't completely up to date with respect to treating augmentation. The idea when Neupro was introduced 10 yrs ago was that it wouldn't cause augmentation - WRONG!! I augmented on in it just 15 months after augmenting on pramipexole in 12. Putting you on Neupro while you are still on rotigatine goes against everything that the RLS experts preach.

Is there hope? Yes. You start down the road with methadone is a good one, but it will take more time (and pain) to completely get off of ropinerole and Neupro. There are also other alternatives to methadone, buprenorphine being one of the latest.

Also, a good neurologist will consider your other pain in combination with your RLS and augmentation. We have one member whose RLS was so bad that even methadone was having a difficult time managing her symptoms. She also lived at high altitude, which raised other concerns that she might stop breathing at night on a high dose of methadone. Other situations mandated that she move to a lower altitude and closer to family. Her new state would not allow the use of methadone for RLS, but her new doctor prescribed a spinal implant to treat her back pain. After some trial and error, the implant was adjusted so that it also manages her RLS now. A doctor in Iowa (I believe) has also been trying spinal nerve stimulators as a way to manage both back pain and RLS.

[Lissa496]

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

[RestlessNan]

Folks, I need feed back. Will I be on Neupro for life and drain my resources? Is there an alternative. I need input.

You sound like a prime candidate for a trip to one of the RLS Quality Care Clinics. It sounds like your neurologist is knowledgeable, but doesn't seem to have my in the way of bedside manner or compassion. Many of us have had to travel in order to get started on changes to our care once we augmented. Your neurologist seems to have a bit of an idea of what is needed, but the fact that you were put on Neupro indicated that (s)he isn't completely up to date with respect to treating augmentation. The idea when Neupro was introduced 10 yrs ago was that it wouldn't cause augmentation - WRONG!! I augmented on in it just 15 months after augmenting on pramipexole in 12. Putting you on Neupro while you are still on rotigatine goes against everything that the RLS experts preach.

Is there hope? Yes. You start down the road with methadone is a good one, but it will take more time (and pain) to completely get off of ropinerole and Neupro. There are also other alternatives to methadone, buprenorphine being one of the latest.

Also, a good neurologist will consider your other pain in combination with your RLS and augmentation. We have one member whose RLS was so bad that even methadone was having a difficult time managing her symptoms. She also lived at high altitude, which raised other concerns that she might stop breathing at night on a high dose of methadone. Other situations mandated that she move to a lower altitude and closer to family. Her new state would not allow the use of methadone for RLS, but her new doctor prescribed a spinal implant to treat her back pain. After some trial and error, the implant was adjusted so that it also manages her RLS now. A doctor in Iowa (I believe) has also been trying spinal nerve stimulators as a way to manage both back pain and RLS.

[bThank you for your wisdom. I was down to .5mg of ropinirole when he switched me to Neupro. I tried to stop the ropinirole then but was having too much breakthrough and tried 1mg which helped. He agreed it was worth continuing. I was disappointed that the million $$$ med didn't cover me for 24 hrs, I thought it was suppose to, but was told it wasn't expected to, 2 weeks into the first box. Dah! I'm being dictated to used no more than 15mg of methadone/24 hrs yet I'm having more than 15mg worth of pain and can't take NSAIDS due to kidney issues.I didn't know that augmentation was as big of a problem with the patches as the oral meds. Quality Care is 3 hrs away at Mayo, anyone been there? Thanks again.