I have been taking ropinorole since 2017, 3 mg. I don’t know if I’m experiencing augmentation but as soon as I take it, it starts to bother me. After about 30 minutes, it does calm down and work somewhat. If I don’t take it at all,’it is terrible of course. unfortunately it does not get me through the night anymore. I wake up a lot. My GP has prescribed 300 mg of gabapentin, but she said I should not take them together but if I do, it works. Anyone ever take ropinorole and gabapentin together? What did you do when you experienced augmentation?
ropinorole augmentation : I have been... - Restless Legs Syn...
ropinorole augmentation
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Welcome to the forum. You will find lots of help, support and understanding here.
Yes you can take them together. And you are experiencing augmentation. 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 there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Since you are not getting through the night without RLS you meet the criteria.
First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. The beginning dose is usually 300 mg gabapentin which is what you are taking. Normally one would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole 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 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.
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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Sigh. Yes you can take gabapentin and Ropinirole together. I suggest you send your doctor a link to the Mayo Clinic Algorithm for best treatment of RLS. It sets out treatments after Ropinirole has caused augmentation.
Experts now say that EVERYONE taking dopamine agonists WILL experience augmentation. The drug stops working and RLS starts earlier in the day and moves to other body part, like arms and legs. And starts to wake you in the night.
The only solution is to get off Ropinirole completely by reducing 0.25mg of normal release Ropinirole every 2 weeks. Most people need an opioid to settle the worsening RLS at each reduction.
Gabapentin doesn't usually stop augmentation or withdrawals so the general advice is to start it 4 weeks before your last dose of Ropinirole.
Dopamine Agonists are no longer first line treatment because of the extremely high prevalence of augmentation and Impulse Control Disorder ( gambling, impulse spending, overeating and hypersexuality).
Your doctor should warn you about augmentation and ICD.
Iron therapy via pills/infusions is now first line treatment, so your doctor needs to arrange full iron panel, morning, fasting blood tests and raise serum ferritin above 100ųg/L, preferably 200ųg/L.
Read and learn all you can.
The average dose of gabapentin is 1200-1500mg, but there's no point raising above 300mg until you are in the last 6 weeks of reducing Ropinirole.
mayoclinicproceedings.org/a...
I cannot tolerate gabapentin or Lyrica (& neither treated my RLS....the side effects out weighed the benefits). So when my augmentation happens, I am done both literally & figuratively. RLS is like being lost in a nightmare.
Did you try Gabapentin and lyrica BEFORE starting a dopamine agonist?The side effects are dizziness, double vision, leg swelling, increased appetite, but they DO settle after 2 months. Many people stop too soon before allowing the body to adjust.
If you take them at the same time as dopamine agonists, they don't usually help. They only start to work around 4 weeks after you get off dopamine agonists.
However, many of us don't respond to them because years on dopamine agonists permanently damage our dopamine receptors. Several studies report gabapentinoids are ineffective after DA exposure.
You then need to rely on iron therapy and opioids.
If you plan now, you will be in a stronger position. Augmentation will happen, but it may be in many years time.
So, ensure you get regular blood tests and keep serum ferritin above 100ųg, preferably 200ųg/L.
Also, never increase the dose of DA when it stops working. Split the dose. Then when that stops working, get off it slowly.
Find a good doctor who is up to date and will prescribe iron infusions and low dose opioids.
At least then you will be in a better position.
I was on lyrica for 6 months, gabapentin for 3 months. It was an absolute nightmare (lyrica must worse than gabapentin) & I will NEVER take them again. Severe depression with scary mood swings & ended up in ER because my bowels literally stopped working & they are still not back to normal. (I was also put on iron but had to stop because of my bowels.) I've lost 50# in the last 9 months & I'm starting a new job, less stressful, normal hours job in June (I'm currently a nurse working a very stressful night shift job.) I recently started a low oxalates diet & am trying to cut out all processed foods. I'm going to cut down requip from 1mg to .75mg this week & see what happens. When I see my primary MD 5/6, I'm asking for a med for anxiety (I have a lifelong history of anxiety) to see if that knocks me out to sleep. If so, I will definitely stop requip. I'm not convinced I have a dopamine and/iron deficit. With proper treatment of my severe anxiety & a less stressful job, working normal hours, I'm hoping I will at least have less symptoms.
Most anti depressants trigger/worsen RLS, so make sure you get the only safe versions. Trazodone and wellbutrin are safe options.Join rls.org as they have excellent webcasts by the top US specialists and can direct you to RLS experts.Gabapentinoids can cause depression for some patients, and suicidal ideation, and therefore your next med option, if iron infusions don't help, is a long half life opioid, like methadone or Buprenorphine. Both highly effective at low dose. Hopefully your hospital will understand about RLS and low dose opioid treatment. If not, refer them to rls.org and Dr Winkelman's opioid register for RLS.
Good luck.
The best medicine for anxiety is buspar.
I take gabapentin 3 300 mg 3 times a day with Ropinole 4 mg 2 x a day it’s the only way to not have restless leg I have been doing this for over 10 years. I have never had augmentation it does make feel nauseous when I take them without food the gabapentin also helps for my neuropathy
⁹If you're on 8mg of Ropinirole, you are on double the FDA max dose. Experts don't prescribe dopamine agonists any more.Please never increase the dose and keep a close eye out for augmentation. If it stops covering your RLS and you get afternoon or early evening RLS, then you will need to get off it. If you started off on 2mg or 4mg of Ropinirole, then increasing the dose to 8mg is a clear sign that you are suffering augmentation.
Be wary. Denial is very strong. I was in denial for 4 years, refusing to accept that being unable to sit in a car, or a cinema was a sign that Ropinirole had stopped working and turned on me. But I wish you good luck.
my dr or I should say his RPN approved the 4 mg once in the morning and once at night, I am seeing a neurologist now who has ordered MRIs on my cervical and lumbar, I also have a spinal stimulator implant for my back, and leg issues,, I have developed a gait,, and she is testing for MS so maybe she will take me off some of my meds. What can you do,, What I am on now helps with my RLS, I have had RLS for over 20 years,, I started with Carb/levo during the day and ropinirole at night back in 2002. what are the side effects for taking to much ropinirole..I don't think I have augmentation
Joolsg is 100% correct. That is twice the maximum amount and by definition is augmentation is augmentation especially if you are taking it morning and evening. Unless you didn't need that much and didn't need it during the day and your doctor or RPN just went ahead and prescribed it anyway.
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 there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
There are all kinds of symptoms from taking dopamine agonists. I could begin to list them all. The worse is impulse control issues like eating too much or gambling.
If your doctor decides to take you off it needs to be very slowly. The usual advice is reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin although you are already on 900 mg. It won't be fully effective for your RLS until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. For RLS 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." This is in addition to what you take during the day for your neuropathy.
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
🫢Have you had your ferritin checked? If so what was it? I have never in all my years of having RLS even heard of that test,, and i go over the results of the test with Rpn, { I have yet to see an actual Dr for my RLS, Feet, ankle swelling, burning numb feet only an RPN " } and even tho its probably not for the best I copy my results for a particular test and paste it into Google and see what that test was done for what. Mostly the answers I get from Rpn's are "You're getting older your aches and pains are normal"I found out 4 years ago I had diabetes 2 and was just given a prescription for melatonin (which makes me so sick} and said to talk to the clinic's dietitian. nothing about what to do if it blood sugar gets too high, too low, I do ask and they give me a booklet to read, my A1c last time was 7.1.
I am hoping that this new Neurologist will help me get off the meds that are causing me all these issues and I differently will talk to her about my RLS,, my appt and the Mris she ordered were more for my gait, and the nerve pain that has started to spread to my hands and knees,, but per usual, sometimes I think I must be invisible or get lost in their paperwork, I got the results in my Patient Portal but my neurologist didn't receive them, since I have a spinal Stimulator implant I had to go out of town to a hospital where they do the Mris with this kind of device When I called the office to hear the results they said they never got them and would faxe and ask that they be sent that was the 12th,, I had the MRIs cervical and lumbar on the 8th of april this is now the 28 th of April, and still do not know,, she was concerned About MS..so I wait patiently. I know people say I should speak up but I watched my mother get rejected by Drs, she thought she was their only patient, she was demanding and controlling about her care,, after witnessing that kind of behavior and after a while having a hard time getting a Dr..I just can't be demanding like she was,, so I just wait patiently. Anyway I saved your post for me and the post from Joosg and I will show them to the neurologist ,I thank you so very much for your insight and knowledge,
The ferritin test is mentioned in the Mayo Updated Algorithm on RLS that I gave you a link to. Your mother may have been too demanding, but you do need to speak up for yourself. Better yet change doctors if the neurologist doesn't help. Are you still in Arizona - what city? I may have the name of a good doctor who is knowledgeable. Who is the neurologist you are seeing?
I am in Sierra Vista, about 45 minutes from Tucson..
There is a Mayo Clinic in Phoenix where you could see a GP to handle your many problems. Although it is not close to you, you would probably only need to see him/her once since most doctors will do telehealth appointments after that. Ask when you call.
Or you could find someone in Sierra Vista. Who are you seeing now?
If your new neurologist does not work out you might message Josana13 who was going to the Mayo Clinic to see a specialist in RLS and ask who her doctor was and what her experience was with him/her was. Please let me know what she says too so I will have this information in case someone else needs it in the future.
I am seeing Dr Yanni Phillips at Sierra Vista Medical Group Neurology
medicines I take and OH my this will be so helpful to me.. I often wonder if I am taking to much,,I have asked Rpn if I might take most of them at night because taking them during the day makes me so sleepy and nauseous I can do anything during the day,
I don't think my RPNs are communicating,, which has me worried that I take too many pills.
I so wish for the days again when you could have a kind Dr who takes care of you, I am sure Rpns are knowledgeable, but I still would like to see the Dr who is affiliated with the Rpns once in a while.
Omeprazole 40mg, gabapentin 3- 3x a day 300 mg each = 900mg x3
Tizanidine4 mg at night, nabumetone 500 mg at night, metformin er 500mg at night,
simvastatin 20 mg at night, furosemide 40mg in the morning, pota chloride er 20 meg morning, allopurinol 100 mg at night, escitalopram 10mg at night, ropinirole 4 mg 1x late morning, and 1x at night. sodium bicarb 650mg i x morning 1 x night, Zolpidem 10mg at night,
/I am not regular on the furosemide and pota chloride or the sodium bicarb I feel ill when I take it, so I don't take it if I have plans for the day, my days and being productive are crucial to me.
are you able to tell me anything and what's your profession that you would know all this..I am thankful for you.
I will get back to you tomorrow on this
I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
It's unbelievable and unacceptable that you can't see a doctor and in effect are being treated by RPN.
"You're getting older your aches and pains are normal" is nonsense and another reason why you should change doctors.
Melatonin is used to treat diabetes but it makes RLS worse for most. Metformin is the most common drug to treat diabetes so that is good that it was prescribed for you.
Omeprazole, an antacid, is a proton pump inhibitor. Most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse. I would suggest gaviscon advance instead. You can get it in Amazon where it is imported from the UK.
Sodium bicarb is also an antacid and is safe for RLS, but you don't need two antacids.
Tizanidine is a muscle relaxer and treats muscle spasms. It is safe for RLS and helps insomnia but can make you tired during the day so I would suggest you take it at night..
Nabumetone is a NSAID that treats pain, Aspirin is a NSAID. It is safe for RLS.
Simvastatin as its name implies is a statin used to lower cholesterol. Statins make RLS worse and can cause legs pain, leg cramps and muscle weakness. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. (not your RPN). A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Since you take gabapentin you should be closely monitored as it can raise the bad LDL and lower the good HDL.
Furosemide is a diuretic and all diuretics make RLS worse. I assume you are taking this because of your swollen ankles. Gabapentin can cause this. I have it but it is not a real problem and I don't take anything for it.
The pota chloride is fine. I take it.
The gabapentin should help your neuropathic pain but it is not going to help your RLS until you are off the ropinirole for several weeks and that is going to be a long time from now as you need to reduce it slowly as I suggested above.
I don't know much about your new neurologist so I would take along a copy of the Mayo Algorithm with you.
Sue you have been so very helpful.. I am printing out everything you have told me and the article from Mayo Clinic..I plan on trying to my next appt. I am getting referrals to a cardiologist, and a spine doctor. I have a Spinal stimulator implant that has slipped out of its pocket. So hopefully armed with your suggestions and some research material, I can get to the bottom of my pain, restless leg, and swelling... Thank you.. you have been very helpful to a lot of us in this forum...
Augmentation had set in and I was going on holiday. I didn't want to up my ropinirole so took gabapentin (300 mg) and ropinirole together for 3 weeks ( it worked a treat, no RLS). I then started reducing my ropinirole. Each time I reduced ropinirole I had increased RSL for 2-4 nights but it was manageable as not painful (maybe due to the gabapentin). I left about 10 days between each reduction but continued taking gabapentin (300 mg). On my last reduction symptoms were particularly severe so took tramadol (50 mg) as well for a couple of nights. My doctor has now put me on pregabalin. I'm currently on 75 mg and have been free of RLS for 2nights. I have had my iron levels checked and they are okay.
That's great. So pleased for you.
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