I was seen yesterday at by Dr Tarpara at Vanderbilt’s QCC for RLS. Officially confirmed augmentation from ropinirole usage. The RLS controls my life 7 days a week. Symptoms start as early as 1-2 pm. Afternoons are something I just try to get through until bedtime. I take ropinirole 2 mg per day total in divided doses; 1/2 mg at b/t 12-2 pm, 1 mg at 7 pm, and 1/2 mg around 12 midnight to get through the night. I had complete iron panel done in July: Ferritin 36, Saturation 21%. I also have Chronic Kidney Disease at a very stable Stage 2 so doing very well with that. I am 64 years old.
Here is the plan I was given yesterday. 1) Oral iron daily for 3 months at which point labs will be rechecked. I was extremely upset that, given my lab values and severity of RLS symptoms, I was denied the option of IV iron infusion. I pushed him on this several times but the answer was only if there is no response to oral iron or it is not tolerated. When I asked what his rationale was he told me oral iron is cheaper and has a better safety profile. Are you kidding me? I expected so much more from a QCC!! 2) Gabapentin 300 mg every evening. Titrate dose up by 300 mg every 3-5 days until desired effect achieved to a maximum of 1200 mg. 3) Follow up in 1 month or sooner if needed. Assuming gabapentin is doing it’s thing and is tolerated we will then discuss tapering off ropinirole at rate of 0.25 mg every 2 weeks. I agree with every part of the plan except the oral iron. Opioids were not discussed as an option.
Can anyone advise me on what time in the evening I should take the Gabapentin? (FYI…I have a message in to my nephrologist to make sure there are no dose restrictions on Gabapentin related to my renal function.)
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Flowergarden2
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Dr Tarpara is not one of the doctors at the Vanderbilt Quality Care Center. That is why you got such bad advice. These are the doctors listed:
Arthur Scott Walters, MD (QCC Director)
Kanika Bagai, MSCI, MD
Mariana Bedoya, MD
Lana Jeradeh Boursoulian, MD (pediatrics)
Beth Ann Malow, MS, MD
Laurel Schaefer, DNP, APRN
Althea Robinson-Shelton, MD (adult and pediatrics)
Allison Stepuszek, DNP, FNP-BC
You should ask see one of these doctors. Note a DNP is a nurse who has a doctoral degree so is not a doctor.
This is the correct advice. 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 you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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 and the Neupro patch (Rotigotine) are no longer the first line treatment for RLS. Gabapentin or pregabalin are. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole 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 split the doses with 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.
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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
For your iron, yes you should have been offered an infusion. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take two 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 75 mg to 100 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thank you so much Sue. I can’t believe I made an appointment with someone not in the QCC…confusing because they’re in the exact same physical location. I’m going to see if it’s possible for me to get another appointment with a different provider there. 🫤
Hi Sue, many thanks for including the algorithm link. I am currently tapering down from 4mg Ropinrole slow release per day and moving to using pregablin as my 1st line of defence. I have been on Ropinrole for 10+ years so this is a scary move for me but the algorithm findings support such a move which is very reassuring. 🙏
I had to get off of Ropinrole for the Gabapentin to start actually helping me. I added in the gabapentin 1 pill at a time every 4 days and simultaneously decrease the ropinirole 1 pill at a time every 4 days. I also had a sleep study test done and it showed I have sleep apnea. I'm now on 800 mg of Gabapentin. I take 4 at 7:30pm and 4 at 8:30pm and go to bed by 9 as I get up at 4:45am. It seems to be helping. I also take Magnesium Glycinate but take that 2 hours before the Gabapentin. It's been a rough 7 months but I think we are finally getting to where it's helping me. I also started taking an iron supplement. We will do blood test to confirm later. It's all in the tweeking. Be honest with your dr. I also keep a diary of my sleep and watch the food triggers. Hope this helps.
I've mentioned this to you before but let me give it to you again. You should take 600 mg at 8 and 200 mg at 6. Taking it less than 2 hours apart reduces its absorption. And you want the most of it closest to your bedtime.
I also saw a Dr at Vanderbilt. He is part of the Sleep Study Clinic. I thought he was part of the QCC also. He gave me the same advice as you. My ferritin level was 59. I have noticed that I feel much better on the Gabapentin 300 mg. I sleep much better but I am still on ropinorole 3 mg. daily split in 2 doses. My RLS starts late afternoon. I just started to increase my gabapentin by 100 mg. as recommended by the Dr. I started my ropinirole withdrawal in April when I was taking 10 mg daily. It’s been a slow process dropping 1/4 to 1/2 mg every two weeks. My Dr recommended a sleep study, which I did at home 3 days ago. Haven’t gotten those results yet. I have a follow up appt with him in October. I did everything through Telehealth appointments because I live 2 hours away. He seems to be better educated than the local drs. in my town. I hope you have good results with your Dr.
Thank you! What time in the evening do you take the gabapentin? You've done well tapering down your Ropinirole but as you say it is a slow process. Seems it could be faster with an opioid? All the best on your journey with RLS.
I take 100 mg around 4:00 pm and 300 mg at 8:00 pm. I was using tramadol for awhile. But things are pretty manageable right now. As a few people on here had mentioned, Whenever I reduce my dose about 2-3 days later symptoms get worse but go away again a few days later.
Was s/he the one that put you on ropinirole after you withdrew from Mirapex? And then increased your dose to 10 mg which is 2 and a half times the maximum dose or was that someone else?
Dr Upender. I did a telehealth visit. So far things are going pretty well. The gabapentin seems to be helping with the DAWS, I should be done with ropinorole by Thanksgiving. Something to be thankful for!
I was on Ropinirole since 2004 right up to 6 weeks ago. I took 3.5mg every night in the end but reached a point where it was no longer any use. They took me off it ‘cold turkey’ and straight onto a rotigine patch. I didn’t sleep at all for 2 weeks. They increased the dose…I’m sleeping better but it’s been a very difficult time. Hope you get some help!
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Gabapentin increase
Iron didn't work
Gabapentin not working
does anyone know if it’s safe to take 300-600 mg of Gabapentin while taking 600 mg of horizant and 2 mg of pramipexole?
