scared!

[6236]

as I have said before I have been on ropinorole for 20 years. I have reached 4mg twice a day. At times the RLS affects my arms and I fear that I am augmenting. I suffer from severe depression and anxiety and the thought of going through augmentation is really getting to me! I have searched for a doctor that could help me through the process of augmenting but with very little luck. If there is anyone from the Atlanta Georgia USA area that may have used a doctor for RLS please let me know!

[Madlegs1]

You will need a doctor who is comfortable with prescribing low dose opioids.

With the current hysteria in USA that will be challenging.

It may be worth contacting Dr Mark Buchfuhrer in California, for information on willing doctors.

Good luck.

[ChrisColumbus]

There's an RLS Quality Care Center in Atlanta: while the RLS Foundation says that they are not currently accepting new patients it might be worth ringing them 1. To check that this info is current, and 2. If so whether they can refer you on to someone nearby:

Emory Sleep Center

12 Executive Park Dr NE

Atlanta, GA 30329

Appointments: [phone]

[6236 in reply to ChrisColumbus]

Thanks for replying so quickly. I was aware of the RLS quality care center at Emory but as you said they state that they are not accepting new patients. I will give them a call and see if they could recommend another doctor. Thank you for the suggestion!

[6236 in reply to 6236]

I contacted the Emory sleep center and they are not taking new patients due to the fact that doctor Rye is the head of the RLS center and he is retiring. They are going to get a recommendation from him and call me back.

[SueJohnson]

At 4 mg twice a day you are on twice the maximum amount and are definitely augmenting. You can start getting off it by yourself but I will search for a good doctor for you once you try the Quality Care Center and find out they aren't accepting new patients and reply to me. It is a several hour search so I don't want to do it and find out it wasn't necessary. Who is your doctor now?

1) Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. And if it is low improving it by an iron infusion can help with your coming off ropinirole.

2) You never answered if you are taking any other medicines or supplements. I can tell you if they make your RLS worse and may be able to provide a safe substitute.

3) To come off ropinirole (pramipexole), reduce by .25 mg (half of a .088[.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).

I know you tried gabapentin before, but it doesn't work when you are taking so much ropinirole.

[ChrisColumbus]

RLS Foundation members have made the following recommendations in Georgia, but this doesn't necessarily mean that all are completely up to date with best practice...

Emory or SueJohnson may have better recommendations:

Ali Araghi

[phone]

Snellville

Scott D. Cooper

[phone]

Cumming

Jill Trumble

[phone]

Savannah

Joseph D. Weissman

[phone]

Decatur

[6236 in reply to ChrisColumbus]

I have an appointment with doctor Scott Cooper next Wednesday. I hope he knows how to handle this. I will post the outcome. Thank you and Sue for your help!

[ChrisColumbus in reply to 6236]

Do make sure that you follow all SueJohnson 's advice, ask Dr Cooper if he's familiar with the Mayo Algorithm, and drop him if he still recommends DAs. I don't know whether you might be able to probe him on these points BEFORE going to see him, but good luck in any case!

[SueJohnson]

On the 3 doctors recommended by members of the RLS Foundation and listed by Chris Columbus although the doctors have been submitted to this list by someone who used them and found them knowledgeable. They still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.

If you do use one of them, let me know so I can make a note for future references.

And again if none of them are right let me know and I will do a search.

[Joolsg]

I agree with the others. You are on twice the FDA limit and will definitely be suffering drug induced worsening (augmentation).Once you accept that, it is half the battle. Getting off Ropinirole is hellish, but if your new doctor can prescribe methadone or Buprenorphine, it makes the withdrawal from Ropinirole a lot easier.

Are you on meds for depression/anxiety? All anti depressants worsen RLS. Safe alternatives are trazodone or Bupropion.

[6236 in reply to Joolsg]

I am on medication for depression and anxiety and have been for a while and they have never caused any problems. My fear is that I am not going to find a doctor that will prescribe opioids. I cannot go through what I went through before I started ropinorole.

[Joolsg in reply to 6236]

When you say they've never caused any problems, what do you mean? Anti depressants actually trigger and worsen RLS. When did your RLS start? If it was bad before you started anti depressants, then they didn't start the disease, but they all make RLS a lot worse. That's why we mention the safe alternatives.However, first you need to get off Ropinirole and onto methadone or Buprenorphine.

There are several good doctors in the USA who will prescribe low dose opioids.

A good doctor will arrange blood tests and ensure your serum ferritin is above 100, preferably 200. Raising brain iron can resolve the majority of cases.

[6236 in reply to Joolsg]

I had RLS long before I started taking anti depressants. I have an appointment with a doctor that was listed on the RLS foundation website but honestly I am not very optimistic about it. You mentioned good doctors across the country but the ones I’ve checked into say that you have to be in the state were they are prescribed. Do you know anything about this?

[Joolsg in reply to 6236]

Sadly not. This is a UK website, run by the UK charity, RLS-UK. We do have several US members though, and they are probably aware of the laws on prescribing out of state.I have heard that in the USA, doctors can only prescribe in the states that they're registered to practise, but I don't really understand how it works.

Definitely consider joining the US charity at rls.org. Membership fees get you access to webinars, a quarterly magazine and local help groups.

And do contact the names you have been given.

Also have a look at Andy Berkowski's website, relacs. He operates out of Ohio and Florida. As you're in Georgia, Florida is the next state. He is excellent and prescribes methadone or Buprenorphine for refractory RLS.

relacshealth.com/

[6236 in reply to Joolsg]

Yes after some research doctors can only prescribe medication in the state they practice in. This is especially true for painkillers

[TheDoDahMan in reply to 6236]

Not true. I live in NV and am being treated by Dr. Buchfuhrer in Downey, CA. He is prescribing me low-dose (10 mg/day) methadone which has stopped my RLS symptoms in their tracks. I've been sleeping 8 hours per day for over 5 years with no development of tolerance.

You'll have to see him in person initially, and then twice each year, depending on your home state. Getting the opioid script filled may be difficult, depending on your local pharmacies. He will send the e-prescription repeatedly until you find a willing pharmacist.

[ziggypiggy]

If you can get on buprenorphine that could be ideal for your situation. The following link below shows evidence that it can help with Major Depressive Disorder. And we know it already helps with RLS. Two birds one stone.

ncbi.nlm.nih.gov/pmc/articl....

[6236 in reply to ziggypiggy]

Thank you I didn’t know that! It’s just getting a doctor to prescribe it!

[Birdland]

Hello. Just want to say that I was on ropinirole for 16 years and had gotten up to 8mg a night. I suffered from extreme augmentation. The good news is, it’s possible to get off of it but it will take time and effort. My best advise is to reduce as slowly as you need to. It is not a race. It took me 3 years in total, with a year and a half break in reduction when I got down to 1 1/2mg per night. I was lucky to live in the Southern California area and saw Dr Buchfuhrer, a world renounced RLS expert. He understands the use of opioids for RLS. But as it turned out I could not tolerate opioids and consequently could not follow his regimen. I tried kratom for a while until I suffered from insomnia and nausea from it. A lot of people do find it helpful though. Dr Buchfuhrer had told me I fell into the 3% that he could not help. I found no other doctor who could help me so I set off on the journey alone. But with determination I did it! Slowly but surely! Keep your eye on the prize. Hopefully you have people in your life who will support you. I have now been ropinirole free for well over 2 years and my RLS is a small fraction of what it was while augmenting. While tapering I was super vigilant about avoiding triggers. Most triggers didn’t bother while on ropinirole because the drug masked them. As soon as I recognized what my triggers were I stayed completely away from them. I couldn’t take the chance of making my symptoms worse than they needed to be. I sincerely hope you find a doctor to prescribe opioids and wish you much luck on your journey!

[Ticki]

hi hon, I live in Washington state and I fly twice a year to see the doctor in California who then writes me his prescription and I come back to Washington and have my pharmacist fill it for me. This doctor will help you however he can he’s available for emails and I hope you get to help you so badly need.Dr.Buckfuhrer.

Doctor information

[TheDoDahMan in reply to Ticki]

As your pic shows, "Buchfuhrer" is the correct spelling.

[Ambler58]

Hope you find a Dr that can help , best wishes .

[Hooked77]

I take a little different view of RLS in the arms than most do. My mother had RLS and I’m pretty sure I remember her mentioning it affecting her arms. She was never on meds. I also have it in my arms and occasionally in the trunk of my body. I live in the Augusta, GA area and go to the Medical College of GA a/k/a Wellstar Augusta Medical Center, Neurology Department. I’ve never asked for opioid help so I can’t comment on that. Dr. Morgan’s PAs, however, are receptive to the help I have asked for. I’m still on low dose pramipexole and on gabapentin and sleep quite well most nights. I’m 79 and have been on the DA for as long as you have, maybe longer. I have no intention of going through hell at my age!! Just wanted to give you a different point of view.

[6236]

thank you for telling me that! I am at the point to where I don’t know what to do. The only problem is the ropinorole has began not to work and I am taking 8mg a day which is twice what you are supposed to take. I have an appointment with a new neurologist Wednesday so I’m going to see what he has to say but not real hopeful.