Having augmentation, I've finally managed to wean off Pramipexole (dopamine antagonist). I have RLS in the evening (violent jerks) and have been taking 400mg Gabapentin 2 hours before bedtime to replace the Pramipexole. However, this isn't hold the spasms and now my GP has told me to take 300mg Gabapentin 3 times daily. I've already gained weight, and feel like a zombie in the morning. I can't understand why I should take the tablets in spaced out doses. Can anyone advise?
Also, my blood ferritin level is 399 and my GP is unconcerned. Surely this is far too high? I tested negative for hemochromatosis. My level has been raised for more than a year.
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Jellylegs61
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Your ferritin is not too high. Mine is over 500 and up to 1,000 is OK.
You don't need gabapentin other than at night because one only has RLS at night. Doctors will prescribe it that way because it used to be only prescribed for neuropathy.
Congratulations for getting off pramipexole. I know that isn't easy.
It is not surprising that 400 gabapentin is not helping as that is a low dose. If you have been off pramipexole for several weeks and your withdrawal symptoms have settled then it is time to increase the gabapentin but not as fast as your doctor said.
It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. You will have to ask your doctor for that size or you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and open up a 300 mg capsule and measure it the contents and divide by 3 to get a 100 mg dose.
Take it 1 to 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.
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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason .
If the gaining weight and feeling like a zombie has happened since you started taking gabapentin, You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.
If that doesn't help, post back here as there are other options.
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 at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Thank you for that valuable advice, Sue. I'm in East Sussex, UK. My challenge will be trying to convince my doctor that his prescribing method is incorrect!
As SueJohnson advises. Serum ferritin of 399 is fine. Taking iron pills within 48 hours of test can artificially raise levels. Also, as you have MS, your inflammation will be higher than normal and that raises serum ferritin.Withdrawal symptoms last months after the last dose of Pramipexole.
The 400mg dose was way too low. And as Sue advises, taking gabapentin 3 times a day is a total waste of meds. You need it at night. You should take as advised by Sue.
The weight gain is caused by increased appetite, so watch what you eat, and fluid retention. The side effects will settle after 2 months.
If gabapentin doesn't work for you at 1200- 1800mg after 3 months at full dose, you may need to switch to Buprenorphine.
Thanks Joolsg. Just need to approach my GP re dosage and hope that I can draw his attention to the current guidelines. I may have to 'do it his way' to prove that it doesn't work.
This is exactly the issue. I refuse to do it their way. We suffer for it? No. If I know more than the practitioner about RLS from my own research, I find a new doctor. I have changed 3 times and finally found one. I know it’s difficult because of insurance and availability. The RLS foundation has listed doctors who do properly treat with the newest research and guidelines. From my quest I found to not get tangled with sleep medicine neurology. I found a neurologist who specializes is movement disorders and success. I hope the best for you!
Hello Jellylegs,Congrats for doing it!! If i may comment, the weight gain for me was temporary after weaning off prami and starting Gabapentin. It's the severe stress and exhaustion from dopamine agonist withdrawal, it caused me to crave snacks and sweets like crazy 🤪, and then I settled after a few weeks. I started eating healthy again and lost the weight. Once you aren't in flight or fight mode your nervous system will calm down. I had energy to do workouts or good long walks again. Sleep is magical ✨️.
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