I am new to this forum and have found it extremely helpful and hopeful. I’m a 70 year old woman and developed RLS a couple of years ago. My GP prescribed ropinirole and it has helped. However, having recently learned about augmentation, which I have now experienced, I’m committed to finding a better way to deal with this.
I am already beginning to taper my dosage a little which has not been too difficult- as yet. My use of ropinirole has not been at a constant level as I take a little less when I can tolerate that.
Also, I have very recently gradually tapered off sertraline after 5 years and hope this may help my RLS symptoms.
In preparation for an appointment I have next month with my doctor, I have requested the full set of iron tests and she has prescribed them. I have, for 20 years or so, been borderline anemic. I am hoping that getting my iron levels where they need to be can go a long way to giving me relief.
My doctor is very reasonable and supportive and I want to discuss next steps with her. My plan is to ask to transition to gabapentin or pregabalin. Would requesting an iron infusion (depending on my test results) as a first step, rather than starting with oral supplements, help with the withdrawal process?
Do you have any other advice or suggestions for me?
My heartfelt thanks in advance!
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MountainWanderer
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An iron infusion would raise serum ferritin levels more quickly than iron pills. Raising ferritin can help reduce augmentation symptoms and withdrawal symptoms.There are now several UK haematology departments that are increasingly aware of the benefits of brain iron in RLS.
St George's in Tooting, The Royal Cornwall in Truro and Gwent Sleep Clinic will all do iron infusions on the NHS.
It will depend on where you live, and how 'accommodating' your local hospital is.
You could certainly ask your GP for a referral to the nearest hospital.
Alternatively, if you saw Prof. Walker at Queen Sq or Dr Jose Thomas at Gwent sleep clinic by telephone appointment privately, they could arrange an infusion locally to you. Their NHS waiting list may be very long. I know Prof. Walker's list is over a year long.
I appreciate that you confirm my thoughts on iron as a help as I withdraw from ropinirole. I live in the US. I have no idea how easy/ difficult this will be where I live. But I am hopeful. Thank you!
You could try Dr Andy Berkowski, Dr Mark Buchfuhrer or Dr Winkelman.Lots of doctors in the USA know the benefits of iron infusions. Join rls.org and they have local help groups and lists of knowledgeable doctors. Good luck.
Thanks for the tips. Also, I so appreciate knowing about rls.org!! I may have found it eventually in my searching, but I am excited to check it out! This forum is so great.
You are definitely on the right track. Let me add a few details. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Be sure you are getting 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, and you can't get n infusion post them here and we can give you some advice.
You are right to get off sertraline as it makes RLS for most people. If you need an anti-depressant, there are two that are safe - wellbutrin and trazodone.
You don't say how much ropinirole you are on. 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. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS as you are probably aware. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 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. 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 of gabapentin or pregabalin 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) daily."
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 she 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, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, using a standing desk, listening to music, meditation and yoga.
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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
I am going to share this and the Mayo Clinic algorithm with my doctor.
I am a 70 year old woman living in the U.S. I'm currently taking 3 mg max of ropinirole daily but some days I can get away only 1 mg in the afternoon and 1 mg at bedtime. I'm trying to keep to that dosage now that I have decided to wean myself off it. Having to sit during the day- travel, movies, restaurants - can sometimes present problems at this level.
I don't need a replacement anti-depressant.
My other medications are meloxicam, lisinopril, amlodipine , and atorvastatin. (I know statins are not good with RLS). Any further advise is greatly appreciated!
MountainWanderer, your story sounds so familiar to me. I, too, am grateful for the support and advice on this site. Since you live in the US, I will share some of the over the counter meds that I have been using with success for 2-3 months now. I take 1 Seratame tablet twice daily (every 12 hours) and 2 SaltWrap Mag R& R tablets at bedtime. I use Hyland's Restful Legs (small tabs that dissolve in my mouth) any time that I have a breakthrough episode (day or night). My research indicated that if taken as directed, in consultation with your dr., they typically do no harm and are useful to many people with RLS. Of course, you must check ingredients and be aware of possible allergies or interactions with other meds. Because of anemia, I had 3 iron infusions about 2 years ago before I knew anything about augmentation. I was taking iron supplements with vitamin C afterwards but dr. said I could stop after tests were good for a year. When augmentation started and I began reducing Requip, I added iron + C again every other night at bedtime. I started taking magnesium glyconate for migraine several years ago and increased it recently to help with augmentation. Advice from several people on this site proved very helpful as I reduced statin and antidepressant without having to change them completely since that had caused problems a few years ago. During the past 2-3 weeks I have been sleeping 5-6 hours each night (from 0 -2) with only a few breakthrough episodes of RLS that have lasted no longer than 3 hours except for one sleepless night of misery. I know it is only a short period of limited success but it has improved my outlook and given me hope. The hardest thing is that the solution is constantly changing because what worked for a while abruptly stops or other issues create new problems. I hope this is helpful to you in some way. I was so relieved when I found people who really do understand this condition and offer their knowledge and support. BarnGir1 wishing you well
Yes, our stories have some similarities and I appreciate your detailed note. A question: What is Seratame? I bought Hylands magnesium spray but have not tried it yet. I might try the Hylands tabs. I’m happy for you that your new regimen (and better sleep) has given you hope. And I appreciate your support!
Seratame is a nonprescription/over the counter supplement in capsule form with a variety of ingredients that are purported to help RLS. It has been mentioned on this site so I looked it up and liked what I read about it. I have been taking it for almost 2 months now. In addition, I found Saltwrap Mag R & R which I take at bedtime. I think it has been helpful in my improved sleep.
Here is a list of the OTC meds I am taking for Restless Legs. I have included the active ingredients. As you can see, several have the same or similar ingredients but right now I am going to continue taking all of them.
Seratame: calms agitated legs. Vit D, Vit B6, Magnesium Glycinate, Vit K2, Turmeric, Passionflower (whole herb), Curcuminoids (Root)
Alpha Lipoic Acid (ALA): an antioxidant that fights free radicals
Mag R & R by Salt Wrap: for muscle recovery and sleep support. Vit. B, Magnesium Glycinate, Rhodiolarosea (root), griffonia simplicifolia (seed), passionflower, melatonin, withania somnifera (seed)
Hyland's Restful Legs: temp. relief of agitation or jerking legs. Arsenicum Album Arsenic calculated, Pulsatilla, Rhus Toxicodendron, Lycopodium, Sulphur, Zincum Metallicum, Chamomilla, Coffea Cruda
I still have bad days and nights with jerking and painful stabs. I recently add terrible bouts of intense itching legs and feet from time to time so I am using a cream when that happens. When I have an attack so severe that I need to get up but want something to do other than walk or pace, I created a standing table to read or use my Kindle. (Thank you, Sue!) I also got a foot/leg exerciser for when I need to get up and move but am too tired to stand, walk or pace. I feel fortunate to have figured out lots of things that help but I still dread nightfall because I never know if I will have an attack or a restful night. I appreciate your kind reply and hope some of this may be helpful for you. I find the support encouraging and hope I can provide a little of that to others.
I am so sorry, but I have never taken Ropinerole. I have found that red vein Kratom has helped me with my RLS . I developed RLS while pregnant with my first baby, I had low iron. I suffered with it for 50 years until I discovered red vein kratom. I use 3 Grams of red vein kratom from Kraken Kratom on line. It has helped me with RLS most nights. I have been taking it for the past three months and can count on one hand the nights I have had RLS but not as bad as before. I order Maeng Da Thai Kratom Powder (red vein) 225 grams at a time from Kraken Kratom and keep it in the freezer until I fill enough capsules for a couple of months.I buy empty capsules size 00 from Amazon and fill them then take about three of them (about 3 grams) every evening. I ordered the manual capsule filler from Amazon and fill my own, it’s cheaper to order the powder than capsules from Kraken Kratom. I do take the green vein some days for more energy. Do some research on line about Kratom. It’s not a controlled substance but research how to take it. Like I said 3 capsules with a gram in each works good for me. I know the loss of sleep from having to move my legs to try to fall asleep. Stretching my feet and legs helps too, also a foot vibrator staved it off long enough to fall asleep. Good luck and God bless!
My GP put me on gabapentin but also got me to take iron tablets to bring up my ferritin levels from 45 to 125.I still needed the gabapentin but I think bringing up my ferritin levels definitely helped stop my legs being totally manic.
Hello, I don’t have any advice regarding Setraline. My Dr prescribed it (even though I asked for something else as I read it wasn’t good for RLS) and I bought it but haven’t taken it as I don’t want to make my legs any worse. So I stay depressed ! Good luck
Luckily I weaned myself off sertraline recently because I felt I didn’t need an antidepressant anymore. I didn’t even know about it’s effect on RLS at the time! But I’m doubly glad now that I did. I hope you find a medication that can work for you.
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