Anyone out there who can advise on how to transition between Pramipexole and Gabapentin?

[JT1965]

First of all I want to say how glad I am that I've found this forum. I feel that I finally found someone who understands the trauma of this devastating condition.

So, my story....I had a brief spell on Ropinerole around 12 years ago but was switched to Pramipexole when I couldn't cope with the side effects. Pramipexole has been on repeat prescription for 10+years without even one question by my GP practice. Anyway, over the last 3-4 years I've found myself having to take the 3x 0.18 Pramipexole earlier and with little or no effect. I feel the symptoms in my arms and my face too, and it makes my life hell. Try explaining to someone that you have RLS in your arms...

Earlier this year I had a spell in hospital where I had gall stones (gall bladder removed 20 years ago btw). After the gall stones removal my LFT's were so bad that I was again hospitalised and finally given a liver biopsy which I'm pleased to say was normal. The consultant at the hospital is convinced that I had drug induced liver injury due to Pramipexole. So they decided I should take gabapentin instead. I was advised to take 3x 100 / day and reduce the Pramipexole by one tablet per week. What a disaster that was. My legs twitched all day and night. So my GP told me to up the dose daily until I reached 1800mg. I thought my legs were going to ext- they swelled up so bad I couldn't stand or get shoes on. So I have stopped the Gabapentin and gone back on the Prami's.

Has anyone got any advice on how to transition from one drug to the other in a more gradual way, or indeed any other offer of advice would be gratefully received.

Thanks in advance

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Doctors who think they know it all!

You are suffering from augmentation.The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. And it does mean you need to come off it, but not the way your doctor did it.

To come off pramipexole reduce by . half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

The usual advice is to start gabapentin 3 weeks before you are off pramipexole. The beginning dose is usually 300 mg gabapentin. It won't be fully effective until you are off pramipexole for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. 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 ."

I would advise you to try gabapentin again as I advised above and take it slow increasing it. If you find your legs swell up again, 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.

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...

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 that has iron in it 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, artificial sweeteners, 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.