Discontinued DA

[Louless9]

Hi

F58 UK

Update on withdrawing from Ropinirole tablets.

I have had RLS for over 10 yrs and tried Pramipexol, then changed to Ropinirole. After visiting consultant they recommended Gabapentin. After advice from this forum I am reducing my Ropinirole. My Ropinirole dose was 1.5mg 3 x day. Gabapentin 100mg am. Pm and 300mg at night.

I have finally done it! No more Ropinirole!

when reducing them by half a 0.5mg tablet each week the 2nd and 3rd days were the worst, I could easily have given up.

I have been free of Rop.. two weeks now and although I still get symptoms especially when I’m tired they’re not so bad. When I do get symptoms I take cocodamol (paracetamol & codeine) tablets and this alleviates the symptoms allowing me to sleep. My sleep has improved no end I’m hiting my target of at least 6 hours sleep per night. My memory is better and I don’t have the brain fog I was experiencing.

The Gabapentin really do affect me, I still need to get the evening dose right as 100mg isn’t enough to ease the symptoms (they’re not as bad as before) but I do get very drowsy. I just feel so close to having no symptoms.

By writing this I really hope this gives others hope that they may find some relief out there, it’s a matter of try, try and try again.

[Joolsg]

Huge congratulations.As advised last time, for RLS you do NOT need to take gabapentin in the day.

So try taking it at night. 500mg 2 hours before bed.

And then you can increase if needed. 500mg is a really low dose.

Average is 1200-1500mg in split 600mg doses 2 hours apart.

With each week, your RLS will continue to settle and get better.

[SueJohnson]

Congratulations for getting off it. I know it wasn't easy. But you did it.

There is no need to take gabapentin other than at night. Doctors prescribe it that way because it is normally used for neuropathic pain and is prescribed off label for RLS so unless they are knowledgeable about RLS they just use how it is normally prescribed.

Unless you started the gabapentin before you were off the ropinirole you need another week for it to be fully effective and even then it may take awhile as the withdrawal effects want to break through.

After that increase it by 100 mg every couple of days until you find the dose that works for you.

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. And since you are taking it at night, being tired is a not a problem.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 within 2 hours for the same reason .

[Louless9 in reply to SueJohnson]

I’m surprised the Gabapentin peaks after 2 hours as I can really feel the effect of the increase in the morning. That’s why I am going to take my night time dose a bit earlier than I normally do.

I’m hoping to stay on the lowest dose possible as I’ve heard some awful things about it so fingers crossed.

Thank you for all your advice. I will continue to let you know how I progress and the outcome of my up coming neurology appointment. She has no idea I was going to discontinue the Ropinirole. She was in fact an advocate for it.

[SueJohnson in reply to Louless9]

Not surprised. So few doctors know anything about RLS.

It's always good to stay on the lowest dose possible. But don't worry too much about what you might have heard. If one looked at the possible side effects of any drug even the most benign ones, one would be scared to try them. And the really bad ones are rare. The nice thing about gabapentin is it is easy to comes off it without any withdrawal effects at all if one does it slowly enough and the side effects then disappear.

[SueJohnson in reply to SueJohnson]

Munroist suggested you could drop the gabapentin by 100 mg a day. I do not advise that as you will likely have withdrawal effects. If you want to come off it, reduce by 100 to 200 mg every 2 weeks.

[Munroist]

500mg Gabapentin is quite low and might not be helping that much. You could possibly try going without and seeing how you manage and whether the side effects improve? Gabapentin works very well for some people but not everyone and the side effects are also quite variable. At that dose I suspect you could drop by 100mg a day safely.

[lorri214]

I just started taking gabapentin myself when the doctors discovered I had neuropathy. DThe gabapentin is for the neuropathy.. I take 600 mg daily. I thought It might also help with the rls I did not speak with the dr. when they gave me the gabapentin since I was in the hospital for them to decide what was wrong with me since my feet were numb. I am not sure if the gabapentin is helping with the rls since I also just started methodone after going off of pramapexole. I have noticed some changes in my body since taking gabapentin such as swollen feet, off balance, constant hunger, and being very tired. Are these symptoms constant. I am thinking about maybe going off gabapentin and dealing with the neurapathy. Anyone have these side effects or is it just me???

[SueJohnson in reply to lorri214]

The side effects of gabapentin tend to go away after a few weeks. If not you can 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.

The methadone at the correct dose should cover your RLS.

[lorri214 in reply to SueJohnson]

what is the correct dose of methodone. I am currently taking .25 mg at 6 pm and 10 mg at 10 pm. does that sound right? also are swollen feet a side effect of gabapentin. I am concerned about this

[SueJohnson in reply to lorri214]

According to the Mayo Algorithm the usual effective dose is 5 mg to 20 mg.

Edema is a side effect of gabapentin but not usually anything to worry about unless it really bothers you and you can't take diuretics to reduce it because they make RLS worse. I have edema.