augmentation on neupro+Gabapentin. should I switch to a different dopamine agonist? All that’s helping is cannabis.

[Discopage]

I’ve been on Neupro 1mg patches for 4+ years. I also currently take 800mg Gabapentin: 400mg twice a day. In the last month my RLS symptoms have appeared nightly beginning around 9:30pm. I’m able to fall asleep but then wake up in the middle of the night with RLS symptoms. The only thing that’s helped me is cannabis gummies or vaping. I’m guessing my symptoms constitute augmentation.

As much as I’d like to taper off the patch, my neurologist has told me in the past that I wouldn’t likely be able to manage my RLS symptoms with a higher dosage of Gabapentin alone. He said his patients tend to need a dopamine agonist.

What does the research say regarding moving from one DA to another? Would it be worthwhile to try shifting to Requip (ropinirole) ER? I read it’s a 24hr release pill.

Aside from the augmentation, with my new insurance Neupro is very expensive: $700+ for 90 2mg patches. I cut them in half to save money vs 1mg patches but still, $700+. I think ropinirole ER will cost about $20-25 a month.

I’ve reached out to my neurologist’s team for guidance. His next available appointments aren’t for a few months.

Thanks

[SueJohnson]

Why does your doctor feel you wouldn’t likely be able to manage your RLS symptoms with a higher dosage of Gabapentin alone? If all of his patients need a dopamine agonist sounds like he is following the previous treatment guidelines and is not willing to learn. You might want to print out the appropriate section of the Mayo Clinic Updated Algorithm on RLS to show him/her.

[Discopage in reply to SueJohnson]

I mentioned the guidelines to him and he was aware of them. What he said was based on his patients’ experience. He’s at a large hospital in my city, in the Parkinson’s and movement disorders center. He sees a lot of RLS patients. Are there a lot of people posting here who’ve come off a DA and are doing fine with Gabapentin only?

If I were to taper off Neupro slowly, how would I do it? I currently cut a 2mg patch in half and take 1mg each day. What if I cut the patch into 8 pieces as equally as possible? Each piece would be .25mg. I could take .75mg for a couple weeks, then .5mg, then .25mg, then stop. Is it advised to increase Gabapentin while I taper the patch? Or take an opioid short-term?

[SueJohnson in reply to Discopage]

Yes there are a number of us who have come off a DA and are doing fine on gabapentin alone. I am one of them. I augmented on ropinirole and now take 1500 mg of gabapentin and have no symptoms, Cutting the patch in 8 pieces is the right way to go. Be sure you let the increased symptoms from each reduction settle before reducing further. Most people use a low dose opioid as they come off it short term. Some people find that after a long time on a DA gabapentin doesn't work but you have only been on it for 4 years. Many end up taking only a low dose opioid, often buprenorphine.

[Discopage in reply to SueJohnson]

do you mean those who can’t manage symptoms on Gabapentin alone after years of taking a DA end up supplementing Gabapentin with a low dose opioid long term? Don’t opioids lead to augmentation too?

[SueJohnson in reply to Discopage]

Only tramodol.

[LoverofParis2014 in reply to Discopage]

I developed severe augmentation with ropinirole and had to stop it. Cannot remember the dosage as that was a few years ago. Currently I take about 5-7.5 Indica (gummy) about 1 hour prior to bedtime and 0.125 mgm of Alprazolam right at bedtime. Have to break a .25 mgm tab in half. The are scored. Sometimes have to take the other half tab if I am unable to get to sleep. Working well, no early onset symptoms. So far PCP willing to give new rx as needed but because it’s controlled drug I am always anxious he might refuse to renew. This combo works best of any regimen ever used. I really watch my diet as well.

[SueJohnson]

Do you need to take the gabapentin twice a day? If you don't have symptoms except at night, you would be better off taking the full 800 mg then. If so take 600 mg 1 to 2 hours before bedtime and the extra 200 mg 2 hours before that since it is not well absorbed above 600 mg. As far as substituting ropinirole, that will work for awhile but you will again develop augmentation and then you are better off without the extended release form since you can't cut it so it is harder to come off of. By the way you are currently on a high dose of Neupro. The maximum used for RLS is normally .5 mg. The equivalent dose of ropinirole to 2 mg of neupro is 8 mg. If you still have patches left, you might as well use them up and you could reduce them as much as you can during that time before switching. Whatever you get down to, multiply by 4 to get the equivalent ropinirole dose.

[Discopage in reply to SueJohnson]

I don’t have RLS symptoms until 9:30pm usually. My Gabapentin is 400mg capsules so I can’t split them. What do you suggest? I currently take 1 capsule at 2:30pm and another at 8:30pm.

If someone switches from Neupro to Ropinirole ER and then later wants to taper DAs, is the issue that you’re going from an ER to a non-ER and thus dopamine levels will be all out of whack? I’m guessing tapering off Neupro directly is ‘easier’ since when you cut the patch it’s still an extended release of the drug? That said, wouldn’t switching from Neupro directly to Ropinirole (non-ER) be equally difficult?

If you’re tapering off Neupro, is it advised to increase your Gabapentin dosage simultaneously?

I take 1mg Neupro. I cut the 2mg patch in half. I have never read that Neupro .5mg is the recommended max dosage for RLS. Where have you come across that? I don’t think that’s specified anywhere in the research I’ve read or the Mayo Clinic guidelines.

I hope my neurologist is willing to help here via email since my next appointment isn’t for a while. Definitely concerned what will happen to my symptoms if I taper off Neupro—RLS symptoms as well as my mental health. No matter how slowly one tapers, once you finish the course I’m guessing DAWS is always a possibility?

[SueJohnson in reply to Discopage]

My bad! Neupro is basically ropinirole. I was thinking of pramipexole. When you said moving from one DA to another that was what had me thinking pramipexole even though I knew neupro was ropinirole. So you would not be moving from one DA to another, just to a different method of delivery of the same thing. So the only advantage to doing that is the price. I also missed that you only take 1 mg. That will teach me to answer questions early in the morning! Since you only have symptoms in the evening switching to non-ER ropinirole and tapering should be no more difficult and in effect easier since it comes in a .25 mg size so no cutting involved. On the gabapentin perhaps you could get your pharmacist on your next refill to divide it into 1 mg capsules. If not and until then take one 400 mg 1 to 2 hours before bedtime and the other 2 hours before that. By taking 800 mg at night you will be increasing your dose but there is no point increasing it beyond this until you are off the DA for about 3 weeks or until your symptoms settle. At that point those 100 mg capsules will come in handy because you will want to increase by 100 mg every couple of days until you find the dose that works for you. Again as you reach 600 mg, take the remainder 2 hours before the 600 mg doses. As far as what Joolsg meant by permanent damage is that you won't respond to gabapentin at all and no it doesn't mean you need to remain on DAs indefinitely. It means you will need to go on opioids since neither gabapentin nor DAs will work.

[Discopage in reply to SueJohnson]

Thanks Sue. Neupro and Ropinirole are different drugs. Neupro is rotigotine. So if I were to switch from Neupro to Ropinirole (ie. Requip generic), would I be better off switching to Ropinirole non-ER? Then lowering the dose to taper? Or is this just delaying the inevitable and I'd likely be better off tapering the patch directly? I checked my supply and I have 4.5 months of Neupro left. Am short on Gabapentin so will need to get a new script—my neuro is likely to prescribe 400mg capsules again since he's not likely to agree to changes 'till I have another appointment.

[SueJohnson in reply to Discopage]

They are extremely similar. I would suggest using up your patches weaning off them. With 4 and a half months left you might be completely off them by the time you would switch. If not the conversion is 1-1/2 ropinirole to 1 Neupro. Phone your neurologist when it is time for a refill and ask for 100 mg capsules. All he can do is say no or ask your pharmacist as I mentioned above.

[Discopage in reply to SueJohnson]

Thanks. I think the main issue with getting a large supply of 100mg is insurance. Could be I can get a new script for 3x300mg per day and take 300mg in early evening and 600mg 1-2 hrs before bed. If I'm going to start a Neupro taper, having the extra 100mg couldn't hurt.

Big question is whether my neuro--or a new doctor I find--agrees to prescribe a low dose opiod to offset the rebound during the tapering. I don't think I'd pursue a taper without the opiod.

[Joolsg]

As your Neurologist deals with Parkinson's patients, he will favour dopamine agonists and not be aware of the latest expert advice as contained in the Mayo algorithm.Your D1 receptors are now overexcited and will continue to be so until you get off ALL dopamine agonists.

Many do well on gabapentin and pregabalin BUT dopamine agonists seem to cause permanent damage for many RLS patients. Dr Buchfuhrer and Dr Berkowski are top RLS experts and they are aware of how dangerous dopamine agonists can be.

Both report that some of their patients don't respond to gabapentin/pregabalin after dopamine agonists.

Low dose opioids are then the only option.

Find a doctor near you who deals with RLS and NOT Parkinson's.

Interesting article attached by Dr Winkelman.

Gabapentin and pregabalin didn't work for me after over a decade on Ropinirole.

I have complete relief with Buprenorphine.

In the USA, you can be prescribed methadone or Buprenorphine for refractory RLS.

Where are you? We do know of a few good RLS doctors in the USA.

sleepreviewmag.com/sleep-tr...

[Discopage in reply to Joolsg]

When you say permanent damage what do you mean? Do they need to remain on DAs indefinitely?

I’m in NYC. I once contacted Dr Buchfuhrer‘s office but the next opening was many months away. I’ll give his office a call Monday. With my new insurance plan (no low deductible options with my job) I still pay about $350 per visit with my neurologist. My guess is Dr Buchfuhrer is not too much more expensive out of pocket?

Any other doctors you’d recommend? I don’t know of any in NY that treat RLS but not Parkinson’s.

[Joolsg in reply to Discopage]

Dr Glen Brook at the Ketamine Clinic treats RLS in New York City. He helped Shumbah and prescribed Buprenorphine pills.Dr Buchfuhrer does tele medicine from California, but I don't know if he can prescribe in NYC. I can't comment on cost etc because I'm in the UK and have no idea how private, insurance based healthcare works.

You have to get off dopamine agonists to allow the D1 receptors to calm down and hopefully repair. Staying on them will only prolong the agony.

Permanent damage can manifest in several ways according to Dr. Buchfuhrer and Berkowski. First, the damaged dopamine receptors don't respond to Alpha2Delta ligands, so pregabalin and gabapentin aren't effective for those patients and also, it can cause ongoing depression. Dr. Berkowski sadly mentions that one of his patients was unable to experience ANY pleasure in anything, so committed suicide. That's very rare I'm sure. Depression is not so rare.

If damage has occurred, you will probably know very quickly because pregabalin /gabapentin won't be very effective ( you have to allow 2 or 3 months to give it chance).

Dr Buchfuhrer prescibes low dose opioids for these cases of refractory RLS. Opioids work on different brain receptors.

[Discopage in reply to Joolsg]

I exchanged emails with Dr. Brooks. Turns out he's retiring soon and thus won't be able to help me.

[Joolsg in reply to Discopage]

Oh no. He's one of the good ones!

[David7 in reply to Discopage]

Dr. Daniel Barone, MD sleep medicine, Weil Cornell.Great RLS doctor in the US, New York.

Best Wishes!

[Discopage in reply to David7]

Thanks I'll contact his office

[Discopage in reply to Joolsg]

Compelling article. When my RLS first appeared my then neurologist put me on Horizant but it didn’t help over a week or so so he prescribed Neupro 1mg. Maybe we didn’t give Horizant enough time.

[Joolsg in reply to Discopage]

Horizant is only available in the USA and as it's similar in action to gabapentin, takes 3 to 4 weeks to be fully effective. So I agree. You probably didn't give it enough time.

[SueJohnson in reply to Discopage]

Horizant is intended for symptoms all day and night.

[SueJohnson]

The following are doctors are listed on the RLS.org site as recommended by their members:

Ana C. Krieger [phone] New York

Harini Sarva [phone] New York

David J. Dickoff [phone] Yonkers

However 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.

[Discopage in reply to SueJohnson]

Looked them up. Dr. Krieger is the only one that doesn't treat Parkinson's. Unfortunately, she's not accepting new patients. I could call the other two but until I pay up for an appointment, I'll have no way of knowing their reliance on DAs.

I'll reach out to Dr Buchfuhrer and Dr Berkowski. I know Dr Buchfuhrer does telemed with patients across the US via private practice. I think Dr. Berkowski limits telemed to a few states—not NY.

[SueJohnson in reply to Discopage]

You can always ask if they have read the Mayo Clinic Updated Algorithm on RLS. The problem is that Dr. Buchfuhrer can't prescribe medicine in NY especially opioids.

[Discopage in reply to SueJohnson]

Right, controlled substance laws. Shit.

By the way, which opiods are recommended and at what dosage?

[SueJohnson in reply to Discopage]

Buprenorphine starting dose ,5 mg.

[Joolsg in reply to Discopage]

Mayo algorithm has the opioids used for RLS set out with starting dose & average dose.

[SueJohnson in reply to Discopage]

You might message sawbird, I gave her the same names, and ask if she saw one of them and what her experience was. To message someone quick on CHAT at the top of the post and then click on New and enter Sawbird

[Discopage in reply to SueJohnson]

I sent her a chat. thanks

[SueJohnson]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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, fast after midnight and have your test in the morning. 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.

[Discopage in reply to SueJohnson]

I last got my iron panel done at end Dec 2022. Ferritin was 210. Saturation was 50%. Previous test was in March 2022. Ferritin was 93. Saturation was 46%. I started taking an iron supplement as per my neurologist after the March results came in.

[Discopage in reply to SueJohnson]

My neuro said he's willing to support me in tapering off Neupro or switching to ropinirole. I've asked him if he's willing to prescribe low dose opiods.

I can't recall if you already answered this question before but would my gabapentin dose remain as is (400mg x 2) until I came completely off Neupro?

[SueJohnson in reply to Discopage]

Yes - actually until your symptoms settle after you come off Neupro which is usually around 3 weeks or so.

[Discopage in reply to SueJohnson]

my neuro isn’t supportive of opioids. he said neupro has been shown to have the lowest risk of augmentation among the DAs. He recommended Horizant over Gabapentin if I were to wean off Neupro.

Is tapering off Neupro without opioids too difficult to be worth attempting?

Horizant is too expensive.

[SueJohnson]

It can be difficult but if you are augmenting, you really have no choice. The only reason you would need Horizant as opposed to gabapentin is if before you took medicines you had RLS all day but you said you don't. It works 24 hours so gabapentin is the better choice and it is cheaper.

[Discopage in reply to SueJohnson]

thanks Sue. My RLS symptoms have reduced since I started taking Gabapentin later in the evening (7:30pm and 9:30pm). Still having issues some nights but not as bad as before. Glad to get your advice.

I haven’t been able to find a neuro or sleep specialist who prescribes opioids. I plan to try reducing Neupro from 1mg to .75mg and will see how it goes. Will notify my neuro first.

[SueJohnson]

Glad to hear it is better. Was sawbird any help on the doctors?

[Discopage in reply to SueJohnson]

I didn't hear back.