Hi All- back after a few years!It's been good to read through some recent succes stories.
My latest epsidoe was to be put on to 2mg (is this the max?) patches by a well known neurologist. I have now started to suffer badly from augmentation (might be affected by a recent bout of Covid?).
I guess I've benefited from a few years of good sleep on them.
Where or who do you recommend I try and see next - I did see an email the other day on a post but can't seem to find that now.
Note - I've tried just about all of the standard non-opiod drugs recommended.
Thanks all!
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lee_uk
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Yes covid can make RLS worse temporarily. You don't say what the patch is?
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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, post them here and we can give you some advice.
Sorry it's NeuPro 2mg 24h. I don't take any other medications.
Yes had ferritin checked few years - can't rememeber the exact number but it was well over 100. I tried to find it on an old post but can;t seem to find that now either.
I'v never tried a magnesium spray might give that a go.
To come off the NeuPro patch ask for the 1 mg patch so you can cut it in quarters. Then reduce by one quarter 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 the patch 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." 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...
No I took it it one big hit - I can't find exact mg but pretty sure it was either up to 1800 or 2100 mg and did nothing. I don;t think I tried the 2 together.
It is no wonder the gabapentin didn't work then as it is not well absorbed above 600 mg. See my answer above on how you should have taken it. And as Joolsg said it won't work fully until you are off the Neupro.
Gabapentin and pregabalin Do NOT work if you're on dopamine agonists and are augmenting. Many people erroneously believe they don't work because their doctors gave them alongside Ropinirole, Pramipexole or Neupro patch.You have to get off dopamine agonists completely before they will work properly.
Interesting. If they didn't work, it's probably because the DAs have caused permanent damage to your dopamine receptors. In that case, low dose, long lasting opioids like methadone & Buprenorphine will probably help if raising serum ferritin doesn't resolve your RLS. Dr Thomas will prescribe but your local health area may not continue the prescription on the NHS. Check this with any private doctor you see.
It's up to you but one would have to make the final cut on the diagonal. And since you live in the US, don't you have insurance with Medicare that would cover most of it?
yes I’m in the United States I’ve paid as much as $300 per month these patches are very expensive they are the same price whether you get a 1 mg or a 4mg
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, 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 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.
See someone at a Sleep Clinic. But FIRST, do ask for their views on Iron infusions and dopamine agonists. If they refuse iron infusions and are still prescribing dopamine agonists, do NOT proceed as they're not up to date. Where are you? Some sleep clinics are better than others.
I can highly recommend Dr Jose Thomas at the Gwent sleep clinic. He does private work out of Spire Cardiff and will so phone consultations.He treats with iron infusions first.
Follow Sue's advice to reduce the patch now and hopefully you'll nearly be off them by the time you see a knowledgeable doctor.
Ask your GP for a full panel fasting blood test. Dr Thomas asks for bloods to be taken first thing in the morning on an empty stomach.Check CRP, serum ferritin, serum iron, transferrin, transferrin saturation. He also likes bloods taken to test for TFT, vitamin D, B12, U and E and FBC to rule out other causes.
Omit any iron supplements for 2/3 days before.
He would arrange all these tests, but if your GP doesthem all beforehand, it will save time.
Dr Thomas also asks all patients to eliminate all caffeine and theophylline containing foods for a 4 week period. This is because many people respond very well to eliminating caffeine. Caffeine is in tea, coffee, chocolate, cocoa. Decaf tea and coffee also contain small amounts of caffeine. Green tea has theophyllines. Wean off slowly over a week and take Paracetamol for headaches.
If after 4 weeks, it makes no difference to your RLS, you can reintroduce.
Dr Thomas also asks patients to complete the IRLSS Scale. So start that now. Copy is on RLS UK website.
The forms are completed on one day to record symptoms for previous week/4 weeks.If I were you, I'd start a symptom/Sleep diary now showing times when you get RLS and how severe it is and when you get sleep.
At least then you are as prepared as you can be for when you have the appointment.
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Thanks for that! Although he only does in person now.
Neurologist or not?
Appointment with neurologist 
looking for a neurologist 
Neurologist appointment 
Neurologist appointment 
