Madopar. I think I am augumenting..help!

[Audrina1209]

I resisted going the pharma way for years with RLS..but because it got chronic this year I had to ask GP for drug hel . GP prescribed Madopar 1 a night b4 bed but that wore off after a few hours...horrible ..went back to GP jncreased to 2 tabs...same thing effect wore off after 3/4 hrs....GP passed me off referral to sleep specialist ..waiting so far 3 weeks for appt from specialist...I cant wait for help..desperate for help so I am going back to Gp to get her to hopefully prescribe something else as I feel that I have augumented on Madopar and at breaking point with this...can anyone recommend what to try next...Gapapentin? Lyrica, Sifrol ???..thanks

[Joolsg]

Oh dear. Your GP is decades behind. Madopar hasn't been used/ recommended for RLS for a long, long time because of the high risk of Impulse Control Disorders and augmentation.I suggest you print off the Mayo algorithm and show to your GP.

When did you start Madopar?

Reduce it slowly( at least 2-3 months) and in the meantime get full panel bloods and ensure serum iron is above 60, serum ferritin above 100.

You should not try Sifrol as dopamine agonists are no longer first line treatment.

Ask for pregabalin or gabapentin and increase the dose slowly up to 250mg of pregabalin at night or 1200mg gabapentin taken 600mg 2 hours before bed and 600mg just before sleep.

If withdrawal symptoms from Madopar are difficult, ask your GP for an opioid or medical cannabis.

Read everything you can as most doct know very little.

mayoclinicproceedings.org/a...

[Audrina1209 in reply to Joolsg]

Hello Jools ..thank you for your reply..it is 2am here in Tasmania Australia..I have been awake with bad symptoms for an hour.. or so...In answer to how long I have been on Madopar..it has only been since 3 November...I am on my 2nd prescription.. do I start on Gabapentin ( or Lyrica) (or both) while slowly getting off Madopar... i just listened to your radio interview 1..it was very good and helpful.....

[Joolsg in reply to Audrina1209]

The very first thing your GP should have done was test your bloods and ensure levels were above recommended levels for RLS.Luckily, as you've been on Madopar for 2 months, the withdrawals may not be too awful.

Take either gabapentin OR pregabalin, not both.

Pregabalin is preferred by the top US experts as it's better absorbed and slightly fewer side effects. If price is an issue, gabapentin is cheaper.

Start now and, if pregabalin, increase by 25mg every 2 days until you reach 200mg. At the same time, reduce your Madopar by 5% every 3 days so you are off it in 2 months.

You may need cannabis or an opioid pain killer if symptoms are troublesome.

[Audrina1209 in reply to Joolsg]

My ferritin was 96 in Dec 2020..will check with GP tomorrrow as I dont have copy of last ferritin levels...I take Ferrograd C every 2nd night...My GP is fairly new ... I take 2 Madopar ..1 an hr before bed about 8pm and another just hr ago at 1.30am.....dr suggested 2 b4 bed ..but then between 12.30am and 1.30 I was in so much pain so decided to split the dose ...perhaps to wean off would it be an idea to go down to 1 a night and then every 2nd night perhaps once I start Pregabalin..I appreciate your answers Jools.

[Joolsg in reply to Audrina1209]

reduce slowly to avoid bad withdrawal symptoms. You can cut the pills using a pill cutter. If you can manage to cut in quarters, that would be the best way, and drop a quarter pill every 8 or so days and see how that goes.If you can get a lower dose pill, that would make it easier.I just wish doctors were taught about RLS. They are supposed to keep up to date but that clearly doesn't happen.

[Audrina1209 in reply to Joolsg]

Sorry Jools ..my Madopar are capsules

[Joolsg in reply to Audrina1209]

I have reduced capsules by cutting them open, dividing the powder and it works well.

[Audrina1209 in reply to Joolsg]

Thanks Jools I will let you know how I get on with GP...(if no good I will be looking for another)

[Audrina1209 in reply to Audrina1209]

Hello Jools I had my phobe appt with sleep specialist yesterday and he is giving me a script for Lyrica...start on 25 , then increase if I need to 50 then 75....I asked him about weaning off Madopar he said no I didnt have to...I am a bit concerned about that, what do you recommend?

[SueJohnson]

Joolsg has given you good advice. The only thing I would add is to take the 600 mg or whatever you start with 1 to 2 hours before bedtime, not at bedtime since it takes awhile to work, and than the dose above 600 mg 2 hours before that. Beginning dose is usually 300 mg gabapentin or 100 mg gabapentin if you are over the age of 65. You can increase it by 100 mg every few days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily" Since it is not well absorbed above 600 mg, that is why the dose above 600 mg should be taken 2 hours before and if you need more than 1200 mg, the remaining dose should be taken an additional 2 hours before that. Lyrica (pregabalin) can be taken in 1 dose. To determine the equivalent dose to gabapentin, divide the total dose of gabapentin by 6. I always suggest one start with gabapentin rather than pregabalin as it can be increased in smaller doses (100 mg). Once you find the correct dose you can switch to pregabalin if you like or stay on gabapentin. They are basically the same. The gabapentin takes at least 3 weeks to be effective, although it won't help much until you are off Madopar for several weeks.

[Audrina1209 in reply to SueJohnson]

Thanks Sue...n

[SueJohnson]

You can start the pregabalin or gabapentin now as it takes about 3 weeks to be effective, but don't increase it until you are off the Madopar especially not to 200 mg of pregabalin as that is equivalent to 1200 mg of gabapentin and you may not need that much, but if you do and you find it effective, try reducing it as you may not need that much.

[Audrina1209 in reply to SueJohnson]

Hi Sue..I had my phobe appt with sleep specialist yesterday and he is giving me a script for Lyrica...start on 25 , then increase if I need to 50 then 75....I asked him about weaning off Madopar he said no I didnt have to...I am a bit concerned about that, what do you recommend

[SueJohnson in reply to Audrina1209]

He is wrong. I definitely recommend that you taper off madopar. Reduce it by a small amount and then after a couple weeks reduce it again. You will suffer during this time, especially near the end, and may need a low dose opioid to help temporarily. But since you have only been on it since November you may not have any problems.

[Audrina1209 in reply to SueJohnson]

Thanks Sue, I had a feeling that would be the case..it took me 3 weeks tovget appt with him and then it was only phone appt...he was nice but I did wonder..he will contact me in 3 weeks...he didnt suggest anything ekse to help ..my new GP refused me Panadol forte a few weeks ago. I take 1 capsule 125 levodooa 100mh Benserazide 25mg and hr b4 bed about 8pm and another at between 12.30 - 2am....and get about approx 2-3 hrs sleep each tab...how do I cut down take only 1 capsule for a few days and then every other day?? Or open capsule and divide???...

[SueJohnson in reply to Audrina1209]

I would open the capsule and divide it. Are you taking levodopa and benserazide in addition to Medopar as Medopar contains both of them?

[Audrina1209 in reply to SueJohnson]

No only Madopar-125 capsules which contain those 2 ingredients..thanks for your advice