good to join and hopefully will get the wisdom of your experiences (and give some of mine!).
I am writing on behalf of my 93 yr old mum who has been suffering from RLS for some time.
She is currently using 1mg Neupro Patches (Rotigotine) and most nights is well controlled. But occasionally (once every week or two) she has a terrible night and is in terrible pain. And then she settles down again
Have others experienced the same? What are the options? We could move her to 2mg but it seems pointless when most of the time she is fine with 1mg? Any other thoughts that may have worked for others?
thanks so much for your help and advice
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MumsSon1
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Putting aside the rotigotine question for the moment, presumably you aren't able to link these occasional breakthroughs to anything eaten, drunk or otherwise out of the ordinary. For example, I don't normally have RLS symptoms but had just half of a very sweet filled doughnut yesterday evening and had terrible RLS.
thanks for the response. No, not really, but its something maybe we can look at in more detail (maybe with a food diary). If she walks more than normal that causes the RLS to worsen. She only ever has symptoms at night
With me it's eating later or more than usual; evening bingeing on sugar, diet foods containing artificial sweeteners - particularly aspartame, alcohol, possibly caffeine... I didn't think about the doughnut that I shared with my wife and I paid for it!
On the rotigotine, it's possible of course to go to 2 mg or even 3 mg. I'll leave others to advise on that.
The general advice would be - for someone younger -to taper off the rotigotine and switch to a more modern treatment as this, like pramipexole and ropinirole, ultimately leads to augmentation where you take more and more to less and less effect.
However as your mum is already 93 and the process can be long and difficult I'm less sure that's the route to go down...
Welcome to the forum. You will find lots of help, support and understanding here.
I agree with Chris. Normally we would suggest she come off it but with her age I would increase it. You don't need to go to the 2 mg patch though. Instead take a 1 mg patch and but it in fourths. Easiest way is to draw lines on it. Then try adding the 1/4 patch and see if that takes care of it.
Has she had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving one's ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when she sees her doctor ask for a full iron panel. She should stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her transferrin saturation to be over 20% but less than 45% and her ferritin to be at least 100. If they are not, post them here and we can give you some advice.
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 in her case walking too much.
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, C, 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 makes her RLS worse.
Many medicines and OTC supplements can make RLS worse. If she is 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.
thats amazing. thank you so much. Mum lives in Manchester, UK.
Interesting about the melatonin. She has been using that for a few months and its made a massive difference to her sleep quality. Its not noticibly made the RLS worse. Shes been relatively settled apart from these weekly/every couple of week episodes
She has had iron levels done in the last few months on my insistance with her GP, they were all 'normal' apparently
People all react differently so if the melatonin doesn't bother her that is great.
Doctors don't usually check for ferritin and even if they do they will say it is normal when what is normal for others is not normal for those of us with RLS so ask if it was checked and if so what the actual value is.
UK docs will say bloods are 'normal' when they most definitely are NOT for RLS.Serum iron needs to be above 60, serum ferritin above 100ųg/L. Preferably 200ųg/L.
You could ask GP to send actual results and as they are 'normal' your mum could start gentle iron ( ferrous bisglycinate) every other night. Raising serum ferritin can help most RLS patients.
You could also ask GP to prescribe a small dose of codeine (30mg) for when the RLS breaks through every 2 weeks.
We clearly need to increase Ferritin. But I am concerned about oral Iron as everything seems to cause her constipation as it is, and the Iron clearly would. Any suggestions welcome (she already has daily Senna and Movicol
If she 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, she should take try 50 mg to 75 mg 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. Iron bisglycinate is much less likely to cause constipation.
She should 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 she takes magnesium, calcium or zinc, even in a multivitamin she should 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.
She should not take her iron tablets before or after exercise since inflammation peaks after a workout. She should not take tumeric as it can interfere with the absorption of iron. If she takes thyroid medicine she shouldn't take it within 4 hours. It takes several months for the iron tablets to slowly raise ones ferritin. Ask for a new blood test after 3 months.
If she still has problems with constipation ask for an iron transfusion since that won't cause constipation. In fact she could do that first thing reminding the doctor about her problems with constipation. If her doctor won't give one she can get one privately at The Iron Clinic in Manchester for around for £800.
Don't just stop the Neupro. Believe me you will be sorry! You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.
Dopamine agonists like ropinirole and pramipexole and Neupro are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)]
Start it 3 weeks before you are off ropinirole or Neupro 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)."
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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 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...
See my reply above on things that help or hurt RLS.
I forgot to add that in reducing the Neupro to reduce by that amount every 2 weeks. 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.
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