I've been lurking off and on but have not posted until today. I'm really glad to have found this group and am thankful to see so much information. I've been dealing with rls for years. I'm 57 and have been on ropinirole for over 10 years now. I started out on 2mg and for the last 5 years have been up to 4 mg. but desperately need something more or different. I am utterly sick and tired of dealing with the horrible symptoms. I am fairly convinced that I am experiencing augmentation from the ropinirole -- symptoms typically start as early as 3 or 4 in the afternoon now and even though the ropinirole eventually gives me some relief, I wake up very early with legs running a marathon and lately it feels like my arms want to join in. If I am very tired, this will go on all day.
I have asked my GP several times to switch me to another drug but she has refused each time. After reading many of the posts here, I think she is just not familiar with the most current treatment. I had my ferritin levels done this morning and am waiting to get the numbers but could use some direction about what to try next and wondering if I should see a neurologist for this instead of my GP.
I do take a few other meds including metoprolol, glipizide, and prozac as well as ibrutinib (long term cancer treatment). I don't drink alcohol and I limit coffee to mornings only.
That's about it for now - thanks for reading!
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Moonmyst
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Yes you are definitely suffering from augmentation and need to come off it. 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. Gabapentin or pregabalin is. 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 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."
Follow SueJohnson's advice. If you're near an RLS expert like Dr Buchfuhrer, Berkowski, Ondo or Winkelman, arrange an appointment. Show your doctor the links below. Hopefully,she will be open to updating her knowledge.Classic augmentation. These drugs are dangerous and cause permanent damage, which is why the Mayo Algorithm no longer has them listed ss first line treatment.
Several of your other medications actually worsen RLS so it will be useful to see an expert in RLS who can suggest safe alternatives and help you switch.
Where do you live? If you let me know I may be able to give you the name of a doctor who is knowledgeable about RLS.
If you haven't already 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...
Prozac is known to make RLS worse for many. The only safe antidepressants are Wellbutrin and Trazodone. Metoprolol also makes RLS worse. A safe one for RLS is propranolol - discuss this with your doctor
Thank you very much for your responses and the great information! I will definitely be looking into the mayo clinic resources. Hopefully I can get some action from the doctor or find someone who will work with me on this. I'm in Flint, MI so if you do know of anyone in this area I would love to know!
Also, I just got iron numbers back. Ferritin is 44 and the saturation level is 28. The reports says this is in range but from what I'm seeing, these numbers are low for rls and indicate there would be some benefit from iron therapy. Wondering if I should pursue an infusion?? Thoughts?
You are lucky - you are not far from one of the experts on RLS and he also does teleconference calls - Joseph A. Berkowski (734) 822-4757 in Ann Arbor. You can view his blogs at https%3A%2F%2Frelacshealth.com%2Fblog.
Yes your ferritin should be over 100 and this helps 60% of people with RLS and in some cases even eliminates their RLS. And it will help with your augmentation. An infusion is definitely called for if you can get it.
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, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.
Many OTC supplements also 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.
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