I have been suffering from RLS for nearly 8 years. Due to augmentation asked GP to change medication from Ropinirole to Gabapentin. Prescribed 100mg twice a day without any further instructions . Do I take 1.25mg ropinarole and Gapapentin or slowly reduce ropinirole and increase Gabapentin.
I suffer from CKD stage 4
Oh dear. The RCGPs refused a campaign, backed by RLS-UK to have RLS taught to GPs. The response was that GPs would know everything needed, or would be able to access research. They refused to add RLS to GP teaching curriculum.Your post shows yet again that GPs know nothing about the disease or the meds used to treat it.
Have a look at RLS-UK website, medications and treatments.
Reduce Ropinirole by 0.25mg every 2 weeks.
Don't start gabapentin until around 4 weeks before the last drop because it doesn't reduce withdrawal symptoms and doesn't start to help properly until about 3 weeks after the last dose of Ropinirole.
When you're 4 weeks from dropping the last dose of Ropinirole, Take 100mg gabapentin the first night around 2 hours before bed, then increase by 100mg a night up to 600mg. Then increase again by 100mg a night to 900mg, but take these doses 2 hours before the 600mg. Gabapentin is poorly absorbed above 600mg, so split the dose and take 2 hours apart. Avoid magnesium within 3 hours either side of the gabapentin as it slows absorption.
You will experience severe RLS at each reduction in Ropinirole. Most patients require a low dose opioid like tramadol 50mg or Oxycodone 5 or 10mg, to settle these symptoms. After the last dose of Ropinirole, withdrawal symptoms become VERY severe for most people and will last at least 3 weeks. Arrange 2 weeks off work at this stage because you experience very little sleep for 2 weeks and the RLS becomes extremely severe. Medical cannabis can help at this stage, so if you apply now, through private clinics, you would have cannabis flower/bud to vape. It can give you a little sleep during the worst stage of withdrawal.
There are a small handful on this site that didn't experience severe withdrawal and you may find that you are one of them.
You also need full panel fasting blood tests and ensure serum ferritin is above 100, preferably 200 and serum iron is above 60.
There are now more doctors who are up to date on RLS in the UK and they will arrange iron infusions and low dose opioids if RLS doesn't respond to gabapentin or pregabalin.
If your GP refuses to refer you for an iron infusion or to prescribe low dose opioids, you may have to pay privately to see one.
Read all the posts headed Ropinirole, Pramipexole, augmentation and learn all you can about the disease. The more you learn, the better the treatment you will receive.
Start with RLS-UK website and the Mayo Clinic Algorithm. The Algorithm is written by the world's top experts and sets out best treatment. Ropinirole and Pramipexole are no longer prescribed first line because of the high rate of augmentation. Iron treatment, by infusions or pills, is now first line treatment and elimination/replacement of trigger meds like anti depressants and anti histamines.
Dr Andy Berkowski, a top US expert, runs a great website with very informative webcasts.
Joolsg is spot on! Let me add just a few things. On reducing your ropinirole, 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.
The usual starting dose of gabapentin is 300 mg. You can increase by 100 mg each night up to 900 mg as Joolsg suggested but I usually suggest you keep it at 300 mg until you are off ropinirole and the symptoms have settled since it won't be fully effective until then and you don't want to take more than you need although 900 mg is still a low dose. Then increase by 100 mg every two 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. as Joolsg said. 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 even in a multivitamin, take it at least 3 hours before or after taking gabapentin as Joolsg said since it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." By the way there is no reason to take it twice a day since you only need it at night.
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 ask your doctor for a full iron panel as Joolsg said. Stop taking any iron supplements 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 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, eating late at night, 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.
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