I’m 40. I’ve been on 1mg Neupro patches for RLS for a few years. I was also on 800mg Gabapentin for six months for anxiety and spent the last couple months tapering off it. Once I went completely off Gabapentin, my RLS symptoms started appearing at night. I was directed to try going back on a small dose of Gabapentin but my RLS symptoms are still appearing at night and sometimes during the afternoon even. My neurologist recommended I start taking Neupro 2mg patches or remain on Neupro 1mg and also take Horizant, a long active form of Gabapentin.
I’m concerned about taking a bigger dose of Neupro. Pretty sure Neupro doses for RLS are 1-3mg so upping to 2mg so soon makes me wonder what will happen in a decade or two. Is taking Horizant and my current dose of Neupro a better move? Or should I consider moving entirely to Requip? My neurologist said Requip only lasts 4-5 hrs so I’d probably have to take another pill in the middle of the night, which seems like bad news for my sleep.
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It wasn’t helping my anxiety and my psychiatrist wanted me to reduce the number of meds taking. Neurologist said I’d be better off with Horizant instead of Gabapentin since Horizant is long acting. In terms of cost, just increasing my Neupro dosage would be cheaper.
If you can get by on 800mg Gabapentin and 1mg Neupro I would stay with that. Dr. Buchfuhrer had recommended a similar treatment for me but I was afraid to start DAs. He had said you can go up to 2mg of Neupro and very few people find relief from just 1mg. Just don’t go higher than 2mg. Also, there is a coupon your doc should be able to get for Horizant. I pay $150 per month for 60 of the 600mg Horizants. Hopefully this helps.
Dr Buchfuhrer recommended a treatment including Gabapentin or Horizant? My neurologist says regular Gabapentin doesn't treat RLS. Have you heard that? All I know is, once I came off Gabapentin, my RLS symptoms appeared. $150 per month for Horizant with a coupon? That's still pretty pricey.
Hi there. Gabapentin is the suggested first line treatment of RLS. Your neurologist is mistaken that regular Gabapentin does not work for RLS. Horizant is just extended release Gabapentin. $150 is sadly cheap. It’s $600 without the coupon. There is not a generic for it yet, so they charge a lot. Upping your Gabapentin to 900 or even 1200 could provide you additional relief. Splitting the dose a couple of hours apart helps as well because only so much Gabapentin can be absorbed at one time. Good luck 😊
800 mg of gabapentin is a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily for the relief of RLS symptoms.", although it sounds like the 800 mg was controlling your RLS symptoms, just not your anxiety. If the gabapentin didn't help your anxiety, it is unlikely Horizant would. But you can certainly try it. Hopefully it will work and you can slowly get off your Neupro patch, since even it can lead to augmentation and the fact you need more and your symptoms are appearing in the afternoon may mean you are already augmenting. Also, neither gabapentin nor Horizant will fully work while you are on Neupro. If you can get off Neupro, you can try buspar for your anxiety without increasing the number of medicines you are on. I don't know what country you are in, but in the US Horizant is very expensive.
I didn't realize this "Also, neither gabapentin nor Horizant will fully work while you are on Neupro."
I'm in the US. Cost is an issue, for sure. I wonder if increasing my Gabapentin (not Horizant) gradually up to my old dose of 800mg is worth trying first. It's so affordable. Have you heard if regular Gabapentin can treat RLS? My neurologist says it doesn't but like you said, I think it helped mine.
Absolutely ! I am on 1500 mg of gabapentin and it completely controls my RLS symptoms. Dopamine agonists such as requip (ropinirole), Neupro patch, and Pramipexole used to be the first-line treatment for RLS but no longer are because of the danger of augmentation. (Gabapentin is) The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and print out a copy for your doctor to it at
Https://mayoclinicproceedings.org/a... If your doctor won't read it, then you need to change doctors. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. You need to come off the Neupro Patch. To come off it, cut the patch in quarters and reduce by 1/4 patch every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. On the gabapentin, go back on 300 mg although it won't be fully effective until you are off the Neupro patch for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. As soon as you are off the Neupro patch (or before if you can convince your doctor it is not too many prescriptions), start on buspar for your anxiety.
Thanks Sue. I read the Mayo Clinic article and sent it to my neurologist. Asked him about the iron levels and Gabapentin.
What about staying with 1mg Neupro for now and adding Gabapentin 300mg and increasing the Gabapentin dosage gradually until my symptoms subside, and then starting the gradual Neupro taper? My neuro still says you shouldn't cut the patches. (Shaking my head.)
My big concern with coming off Neupro is its effect on my mental health, not to mention my RLS. The depression from withdrawal can be really severe. I missed some doses in a row once and I spiraled.
I wonder if Gabapentin alone will be enough to treat my RLS when all this is said and done. Do some people go through all the tapering off DAs only to find out they have to go back on them? That would be devastating.
I would see a new neuro but all the ones I called are booked till June.
You can try increasing the gabapentin until your symptoms subside and then starting the neupro taper, although as I mentioned, I wouldn't recommend it but obviously that's your choice and what you feel comfortable with. Wellbutrin is a recommended antidepressant for RLS (another prescription unfortunately). Yes gabapentin alone should be enough to treat your RLS.
Oh I see. Makes sense. Still waiting on word from my neuro. Are there research papers that talk about why Neupro limits the effectiveness of Gabapentin beyond 300mg?
Your neurologist should know about the Mayo Clinic Updated Algorithm on RLS. I suggest giving a copy of it to your doctor and also reading it yourself. It is extremely helpful and will answer your questions as well as providing a current guideline for treatment of RLS. I take Gabapentin in a split dose 600mg and 300mg in the evening as well as iron bisglycinate and it’s providing relief!
I take both doses in the evening. Apparently it’s best to take no more than 600mg at once since it’s absorbed better. Sue Johnson explains this well. So I take 600mg and then 300 mg two hours later. I try to take these doses later in the evening and then it lasts through the night.
I also take iron bisglycinate (25mg) each night on an empty stomach. Iron therapy is very effective for me. Check with LonePine for her insights on this.
I wish you well. This forum has many great insights and helpful people. It has been a lifesaver for me!
Last time I checked my ferritin level was ok but it's been a while. I assume I need to get it checked again before starting a supplement. I used to use a Malic Acid with Magnesium supplement but no idea what role if any it actually played in alleviating my RLS symptoms.
I encourage you to talk to your doc about Gabapentin. I take 1800 mg of gabapentin and it generally works. I take it in 3, 600 mg doses spaced 2 hours apart. Some nights I have to supplement this with 0.5 mg of ropinerole. I minimize the ropinerole to reduce the risk of augmentation. This approach works because i only have symptoms in the evening. In the US, Horizant is horribly expensive (on the order of $6000/year). I was on Gralise (another slow release form of gabapentin) but this is also expensive (but not as bad) and my insurance quit covering it. In any case, Gralise was no more effective than gabapentin. Insurance is also useless for covering Horizant.
I had to many side effects taking more than 600 mg of gabapentin, and a few years ago the doctor that I saw at Mayo Clinic put me on Neupro. (It was before the latest protocol was published.) I am using the 2 mg Neupro patch, along with 600 mg of gabapentin. I am also supplementing with iron. I realize that this may not work indefinitely, and I may begin to experience augmentation. I'm hoping it will buy me some time until other treatment options exist, as I am reluctant to try opioids.
My neurologist replied and said the company that makes Horizant made a deal with a pharmacy called TruaX and the maximum out-of-pocket cost for patients is now $40 per month regardless of their insurance plan. See arborpatientdirect.com/ For those of you on Horizant, are you still paying more than $40?
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