As I've just joined, let me say that I hope that general practitioners are aware of this website. In my experience, their understanding of how to treat RLS is minimal and leads to patients experiencing severe disease symptoms due to augmentation. My experience may be one of many more. I hope to share what has or has not been helpful to me. For practical advice on mild to moderate cases, I have always benefited from hot baths. As my disease progressed, I learned to take my meds at dinner time before symptoms appeared. Otherwise, the meds such as ropinirole or pramipexole do not work to subdue the symptoms.
I am currently deeply affected by augmentation after too many years on dopamine agonists. I wish that a PCP had referred me to a specialist for treatment long before this augmentation began. I am now seeing a sleep medicine specialist. Hopefully, we can work through the severe augmentation issue and withdrawal problems from weaning off the dopamine agonist while we introduce Gabapentin. Any advice from similar experiences would be appreciated. If I keep taking these hot baths, I'm going to baked. 😱
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To come off ropinirole, reduce by .25 mg every 2 weeks or so. If it is pramipexole reduce by .125. 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 ropinirolean pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin . 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 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. Most of the side effects of gabapentin 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 or pregabalin as it will interfere with the absorption of them. 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." 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 you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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, 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 as you discovered, 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, playing and listening to music, meditation, creative hobbies 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.
Thank you, Sue Johnson. I was reading the Mayo Clinic article when I saw your response come in so I am very grateful for your advice. I fully intend to refer it to my PCP and Sleep Medicine Specialist. I will try the shower approach that you suggest. As a result of reading the Mayo Clinic article and your advice, i will be moving my dose times to earlier in the afternoon and evening for my Gabapentin which had been prescribed at 600 mg with 300 at 5 p.m. and 300 at 10:00 p.m. I have been slowly reducing Pramipexole and am now at .125 mg. My symptoms are still so severe that I cannot relax and enjoy evening TV or a good book after 7:00 p.m. By bedtime which is usually 10:30 p.m., I am in full body RLS if I try to go to bed. I am sleeping in the guest room so as not to disturb my husband. Truthfully, I don't mind this as much as he does 🤭 Seriously, I am realistically anticipating several weeks to a couple of months of these troubling issues as I wait for the Pramipexole to leave my life for good. I still remember when the PCP gave me Pramipexole and warned me that it would eventually be maxed and I would need to explore other options once that happens. It is sad that he was not able to anticipate th
e problems he was setting me up for in the future. That was 15 years ago! The Hippocratic Oath - "Do No Harm".
Unfortunately 15 years ago ropinirole and pramipexole were the first line treatments for RLS which is why so many doctors prescribed it and they haven't kept up to date. My doctor prescribed ropinirole just 13 months ago. In a way I was lucky I augmented quickly going up to the maximum dose so it was relatively easy to come off it with the help of a different doctor. But hang in there. You will make it!
After a few weeks of medication adjustments, I am on 600 mg Gabapentin taken as 300 mid day and the other 300 at dinner. I have consulted with my NP and added Trazadone 50 mg at bedtime for sleep. I feel like a new person and am so relieved. I have also followed the advice of the NP to reduce my caffeine and alcohol use. It was easier to do that than I expected.
Your advice to me and other subscribers is so very helpful. I realize that your privacy and identity are to be protected so I cannot ask if your advice comes from professional experience. I have another question that you may be able to answer. I found the Mayo Clinic article on the Management of RLS Syndrome: An Updated Algorithm so informative that I forwarded it to the NP who treats me for RLS at a pulmonologist practice. She also monitors my sleep apnea. She appreciated the article and thanked me for sending it to her. My PCP had treated my RLS until I reached the point of augmentation. When I approached her for help with the augmentation and asked if Gabapentin could be prescribed, she responded that Gabapentin was not preferred for RLS and she prescribed Clonazapam which was not helpful in the least. She did not address the need to wean-off of Pramipexole or recommend that I see a sleep specialist at that point. I approached the NP on my own and finally received successful treatment. So, I would like to share the Mayo Clinic article with my PCP but I don't wish to be inappropriate. This PCP treats my whole family so I would not wish to insult her. If you, SueJohnson or any other subscribers wish to comment on this, I would greatly appreciate it. Again, thank you for your advice.
I'm glad things are better for you. There is no problem with sharing the Mayo Clinic Algorithm. If s/he is insulted that is their problem. The more doctors or NP read it the better. No I don't have professional experience. 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.
If your symptoms are really bad, you might want to go back up a step to your previous amount, wait for the symptoms to settle and then slowly reduce from there.
can you tell me if moving your doses to earlier in the day is helping. My husband takes his at 5pm and 9pm but by the time he goes to bed at 10ish he is still not tired and legs start playing up. He eventually gets a couple of hours sleep about 4/5am. TIA
I replied to you yesterday, but fat thumbed something so it did not get sent, sorry. To answer you question, yes, moving the doses up to earlier in the day was very successful. I have had comfortable afternoons for the first time in weeks. Most evenings are good but I still need a warm bath sometimes to allow me to relax to watch TV. My sleep medicine was removed when I started to gabapentin with the hope that I wouldn't need it plus Ambien was not recommended. Even though the RLS was under control, it was still not easy to get to sleep. I had been on Trazadone for sleep a while back but it was contraindicated with some other meds. Now that those meds are discontinued, I asked my sleep medicine specialist if I could go back on Trazadone at 50 mg. She agreed and I am now sleeping very well.
A few practical suggestions that I might add are that keeping your feet elevated may add to your husband's discomfort. If he sits in a recliner or puts his feet up on a sofa, he might try to keep his feet down. I forgot to ask if your husband is being treated by a pcp or sleep medicine specialist. I got much better results once I consulted my sleep medicine specialist who I had seen for sleep apnea. Turns out, she was better informed on augmentation issues with RLS. Would you say that your husband in at that point where he is experiencing augmentation? Which medication does he take and how much?
I have gained so much support from this forum. I hope that my advice to you is as helpful as others have been for me. Finally, I agree with SueJohnson who says that any treatments regarding medications should be verified by you physician or NP. And, if your pcp is no help, seek out a sleep medicine specialist.
I'm so pleased you have a sleep specialist helping you through withdrawal.My GP gave me zero help and initially refused any drugs to help me get off Ropinirole.
However, I'm so glad I didn't give up as my RLS is now totally controlled.
I found cannabis was the best help during the worst nights of withdrawal, so, if it's legal in your state, get hold of some. Vaping is the fastest way to get relief from the withdrawal sensations.
It takes about a month after the last dose of Ropinirole for the RLS to settle so allow time for the gabapentin to work.
Onward! I had severe RLS (2 hours sleep/night). Docs offered me muscle relaxants (did nothing) and Ropinirole ("It's the only thing that will work"). Thanks to this forum - I refused the Rop and started iron supplements that worked a wonder.
I am sorry it takes me so long to reply back. I am very slow with typing and social media stuff. It sounds like you can give me advice about dopamine agonists. I started out on Pramipexol in Dec of '21 by my PCP then got switched to Ropinirole when I started seeing a neurologist in Feb '22. My RLS wasn't getting any better so the neurologist recently switched me to the Neupro 24 hour patch at 2 mg. Its been a little over two weeks now and my ICD has gotten more intense then it was on Ropinirole. Several months ago I saw the definition of akathisia and my jaw hit the floor, it sounded exactly like what I have been experiencing more so than RLS. I think I have both. My neurologist gave me some BS information about akathisia and I think I know more about it than he does, so I probably am going to dump him and find somebody else. The Neupro seems to be helping the RLS but my ICD is out of control. I am determined to get off all dopamine agonists and am waiting for my neurologist to call me back so I can get the 1 mg patch so I can wean off the dopamine crap. Listen to Sue Johnson, she sounds like she knows what she is talking about. I am 70 years old and have recently started weight training with lite weights, not like when I was a young man and went all out lifting weights. I do it firstly because it helps when I get the RLS and akathisia symptoms. Secondly, it is making me stronger over all and I am feeling better because of that and I am able to weed wack my yard easier and other things. I feel more confident. I recommend it. I should be doing cardio also but I keep putting it off. I have a heat intolerance problem from being on antidepressants and antipsychotics for 41 years. I was an avid jogger as a young person, then switched to walking when my knees and back started giving me problems in my 30s. Three years ago I developed Post Exertion Malaise which is the primary symptom of CFS, but nobody in my circle i.e. wife, neurologist, PCP, want to agree with me so I quit talking about it with them. Now they think I'm on an akathisia kick, like I'm just a hypochondriac. Screw 'em. I've got something that is messing up my nerves and from I've learned about akathisia I am going with that one. My point is that I would get PEM from cardio or any thing like pushing the lawn mower in the heat so I quit walking for exercise even. The weight training will do it also but I can modulate that easier and be in air conditioning. This is the most I've typed in a long time. Looking forward to your reply and everyone else. Thanks. Clingon.
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