Gabapentin to Pramipexole for RLS/PLMD.

[Arrendene1]

Has anyone changed from Gabapentin to Pramipexole for RLS/PLMD. What your experience of doing this? Many thanks

[SueJohnson]

Oh for gosh sakes NO !!! That is going the wrong direction. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged . DAs (dopamine agonists) used to be the first line treatment for RLS but no longer are because of the danger of augmentation. Gabapentin or pregabalin are. Why do you want to get off gabapentin - because it doesn't work or because of side effects?

If it doesn't work, you are probably not taking enough or are taking it the wrong way. This is the correct way: 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. 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 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If it is the side effects 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.

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, 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.

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 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(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.

[Arrendene1 in reply to SueJohnson]

Sue, thank you for such a detailed reply.

The Gabapentin isn’t working for me as I had to reduce down to 300mg as the side effects the next day were affecting me so much. I couldn’t function properly and also I’ve been on it for about nine years, I think. I did have my ferritin levels tested and they were all good. Although I can’t remember what the number was.

I don’t drink smoke or have caffeine after 10 am. I try not to eat late at night and although I tried HRT I’m no longer on that, unfortunately stress is a factor, although I try to relax my situation is unlikely to change any time soon. I do have a weighted blanket but I will certainly try some of the other tips you have suggested. I did wonder about CBD oil but found it rather confusing when I looked into what brand to try.

I take sertraline and I know that aggravates it but it’s something I have to take and having tried alternatives they were no good. I did have a sleep study the other day which confirmed the PLMD is still moderate on the gabapentin hence the suggestion to change. Unfortunately, years ago I would have seen the consultant to discuss my concerns, but now with NHS cuts they have just sent the report to my GP and the only suggestion is for Pramipexole which is frustrating as my GP admits he doesn’t know much about PLMD particularly and restless legs.

[SueJohnson in reply to Arrendene1]

Have you tried trazodone as a substitute for sertraline?

Do ask your doctor what your ferritin was.

And do try pregabalin. If that doesn't work ask for a low dose opioid, Buprenorphine is the best one because it lasts 24 hours. For the others they only last 4 to 6 hours so you get mini withdrawals if you don't take them that often.

[707twitcher]

Please read through all the posts here about people struggling to come off Pramipexole. Unless you are, like 85 with not long to live, I'd avoid starting Pramipexole or any other DA. You will almost certainly reach a point of augmentation (when the medication starts making your RLS worse instead of better) and suffer a lot weaning off it. Find here (or just Google it) the Mayo algorithm for RLS - it explains why DAs are no longer prescribed by doctors who are even semi-knowledgeable about RLS. And take a copy to your doctor and ask to try pregabalin or buprenorphine.

[SueJohnson in reply to 707twitcher]

Even if you are 85. I am 83 and plan to live a long long time.