Hi, I was taking 2mg/day of Ropinirole. It worked well for a couple of years, but then the nausea side effect returned. I also found out about the risks of augmentation. I asked my GP to contact a consultant (neurologist) about switching to Gabapentin (and whether one could cycle the two, say over 2yrs, to avoid augmentation). Gabapentin was advised and i was taking 600mg/day for about 18mths, and then increased to 900. I started to get very severe leg (quadriceps) pain in the night. I an a PT so I do weight- train a lot, but it was clear to me that it was RLS not overtraining causing the pain.
So back to the GP who consulted the neurologist who advised Zapain for the leg pain (codeine+paracetemol). I've been reticent to take too much as you can quickly build a tolerance. Having had another review, it was decided to switch to Pregabalin.
In tapering off the gabapentin over a few weeks, i have suffered fomr horrendous insomnia - both in terms of inability to get to sleep and to stay asleep,, often getting only 3-4hrs sleep a night.
I've had periods of insomnia in the past, and I do get on top of it eventually - this time i'm putting it mostly down to coming off the gabapentin.
Having come off, i've been started on 50mg/day of Pregabalin and when i aksed after a couple of weeks to increase the GP said no, because the pain was no longer present at night. BUT... the RLS has nonetheless returned (albeit without so much pain) to the point where it wakes my partner.
Apologies for the length of this post - I want to insist the GP increases my doesage - what is generally thought of as a range for treatment of RLS? I'm guessing 100-450mg/day. (it also seems that gapapentin/preg ratio might be aorund 4:1 ??). Ropinirole i think is 1-4mg day.
Just to add that my bloodwork has been consistently fine, no deficiencies or inflammation and BP etc etc all good.
Any/all thoughts on the above would be very much appreciated.
Thanks
Nick
* The neurologist put the risk of augmentation on Ropinirole at about 7-10%
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bluffpt
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There is no need to reduce gabapentin before switching to pregabalin. Many NHS health authorities make it clear a straight switch can happen.
The rates of Augmentation for dopamine agonists are 7 -10% per year. So at 8 years, nearly everyone experiences Augmentation. The top experts in the USA are now firmly of the view that these drugs WILL lead to Augmentation. It's simply when, not if. Existing studies are already outdated and prevalence is probably higher.
So, ask GP for the correct equivalent dose of pregabalin. You still have severe RLS, which needs treatment. 150mg is the average dose. Refer your GP to NICE guidance and RLS-UK website.
If I were you, I'd avoid Ropinirole like the plague. Too many people on here suffer Augmentation. It can cause permanent damage to dopamine receptors.
As for blood tests, check the ACTUAL numbers, serum iron needs to be above 60ųg/L, serum ferritin above 100ųg/L and percentage saturation below 45/48%.
Iron infusions can be obtained on the NHS in a few areas. But most people will need to go privately. Iron treatment can resolve the majority of RLS cases, which is why it's now first line treatment amongst experts.
I should have said that 200mg to 300mg is the usual 'effective' dose. And i 600mg as maximum dose.As he was on 900mg gabapentin, the staight swap would be 150mg.
And that might need to be increased if it's ineffective.
Are you off the ropinirole and if so how long? If not let me know as I will have different advice for you. And the risk of augmentation is up to 70% and at least one expert believes everyone will suffer from augmentation.
There was no need to wean off gabapentin before switching to pregabalin. You can switch directly and the ratio is 6 to 1. so at 900 gabapentin you could have gone directly to 150 pregabalin. 50 mg of pregabalin is below the starting dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin." Increase it by 25 mg every couple of days until you find the dose that controls your symptoms,
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. at Https://mayoclinicproceedings.org/a... Show him/her the section on pregabalin.
Have you had your ferritin checked? This is the first thing that should have been done. 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 in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. 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.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, 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.
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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
This is an NHS guide to switching from gabapentin to prgabalin. There are no standardised protocols. This guide includes a reduction from gabapentin and a slow increase in pregabalin, BUT it also mentions a straight switch.
To avoid withdrawal symptoms ( which can be severe) AND loss of cover for severe RLS, you should have been advised to do a straight switch.
The insomnia was because you came off gabapentin too fast. If you had reduced very slowly like 100 to 200 mg every 2 weeks you would have had no withdrawal effects. Plus gabapentin generally helps one sleep.
Many thanks for all your replies - extremely helpful. So having switched from 900mg/day gabapentin to only 50mg/day pregabalin, i will ask my GP to increase to 150mg/day - which from your replies and the RLS-UK would seem to be an equivalent dosage.
My serum ferritin is 145.3 - i will ask for the other numbers quoted in your replies and see how they look.
Re. drowsiness on gabapentin (pregabalin) - many seem to have this as a (unwanted) side effect. I wish i had that too.... 900mg of gabapentin had zero effect on me in terms of feeling drowsy or sleepy. However, Zapain and sometimes ibruprofen do seem to help me sleep, suggesting that RLS/muscular pain is likely one reasin why my sleep is poor.
In terms of "sleep hygiene" and nutrition, I avoid caffeine like the plague, rarely drink alcohol and eat very cleanly. In the evening, i never look at a phone or pc and we have candlelight. I've read some very interesting books recently, which also suggest meal timing as being important for creating "sleep drive" and regulating one's biological clock/circadian rhythm. I take a few supplements - magnesium glycinate, fish oil, glucosamine and creatine.
The side of my lower legs both have a large bald patch on them... due to my legs rubbing together in the night LOL!
RE. the switch from gabapentin to pregab... from what i'd read, they could be taken concurrently and you just reduce gaba and increase pregab over time... but my GP said no... I believe it's because he doesn't fully understand RLS - so I have a phone call next week and I will insist on getting up to at least 150mg/day. It's been quite a few years since i read the Mayo research, so i wil reference that and the RLS-UK data.
Thanks again for your replies, help and suggestions - very appreciated.
The Mayo article was put out in June 2021 so if it has been many years you may not have read it. On your ferritin did you follow the instructions I mentioned above. If not, then it may have tested higher than it really is. In any case some people need to have it up to 200 or even 300 so it wouldn't hurt to take iron.
If you 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, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. 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 you take magnesium, calcium or zinc, even in a multivitamin 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. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
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