Rotigotine patch

[Bridall]

Has anyone used a Rotigotine patch for restless legs?

[Joolsg]

youtu.be/Tz7g9sxS0_I?si=WjP...(Not working as expected?)

This video explains exactly why you SHOULD NOT agree to the Rotigitone patch.

Avoid, avoid, avoid.

UK neurologists are under the mistaken illusion that the patch doesn't cause augmentation. IT DOES.

Everyone on this site who has used it experiences drug induced worsening pretty quickly and it's even more hellish to get off than Ropinirole or Pramipexole.

[Bridall in reply to Joolsg]

Hi I went to the doctor today & he said my ferritin in July was 60 although it was 120 in 2022. My haemoglobin is 126. So having another ferritin test.

[Joolsg in reply to Bridall]

Hopefully your doctor will not suggest Rotigitone.RLS-UK now campaigns against these drugs & follows the Mayo Clinic Algorithm and new guidance from the American Academy of Sleep Medicine, which relegates ALL dopamine agonists to end of life scenarios.

Your serum ferritin needs to be above 200ųg/L ideally.

[Bridall in reply to Joolsg]

I thought he suggested Rotistitmine but I can’t find anything on it.

[Joolsg in reply to Bridall]

There is no drug for RLS called Rotistimine.The only RLS drug beginning Roti is rotigitone, very popular with UK neurologists BUT they're all wrong.

It most definitely helps at first, but then causes very severe augmentation, which you definitely do NOT want.

And when it inevitably happens, the doctor who prescribed it will 'disappear' & say it's not supposed to happen, or that it's the progression.of the disease. All nonsense.

Too many patients experience severe worsening on Rotigitone and then their neurologists don't help them get off the poison.

We need written contracts.

Any UK doctors prescribing this Rotigitone or Ropinirole or Pramipexole has to agree to prescribe low dose opioids, like Buprenorphine, when RLS inevitably worsens, and even to pay for residential rehab to help their patients get off these drugs safely.

They'd soon read the evidence and research papers and stop prescribing them.

[Bridall in reply to Joolsg]

Thank you maybe i misheard.

[SueJohnson in reply to Joolsg]

Love the idea of a contract. 😀

[Joolsg in reply to SueJohnson]

Imagine? They'd soon stop prescribing them like sweeties/candy!I spoke to Angharad Vaughan this afternoon and she's been very busy bringing legal cases against UK doctors for failure to warn about ICD.

I hope she keeps doing it.

Money is the ONLY way they'll listen.

[SueJohnson in reply to Joolsg]

Absolutely true.

[SueJohnson in reply to Bridall]

While you are waiting foe the test and the results you might as well start taking iron

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Assuming your new test is the same, ask for a new blood test after 3 months.

[Doped in reply to Joolsg]

Hi Joolsg, I've been tapering down from my 2mg Neupro patch for almost 3 months, it's been awful but I'm now on .5 so I'm down three quarters of the original amount. The video says you can't reduce the patch but I've been cutting it and recently read that that's not a good idea as active compound may dump into the system too quickly instead of the steady 24 hour release. Any thoughts on this?

[Joolsg in reply to Doped]

⁸Many people cut the patch and do what you have done. It is definitely possible.

The instructions say not to, but many members on here have done it.

As you're nearly there, you may as well keep going.

The alternative is to switch to equivalent dose of normal release Ropinirole and drop 0.25mg pill every 2 weeks.

As you're at .5 you can start adding gabapentin or pregabalin now as they take 3 to 4 weeks to be fully effective and they then don't start to cover the RLS until about 3 weeks after the last dose of Rotigitone.

Also ensure serum ferritin is above 200ųg.

Have a look at Dr Berkowski Buprenorphine study. He uses Buprenorphine to help get patients off dopamine agonists without the hellish withdrawals.

neurologyadvisor.com/report...

[Doped in reply to Joolsg]

Thank you for the reassuring advice, I feel confident now that what I'm doing is right and I'll plough on until I have this awful drug out of my system

[Joolsg in reply to Doped]

You have done so well to get this far. It is horrendous.But it is well worth the pain. Once you're through withdrawal, you'll feel so much better.

I switched to tramadol and gabapentin. Then Oxycontin and pregabalin.

These work for many, many people.

Sadly, not for me.

But Buprenorphine has stopped ALL my RLS and I sleep 8 hours every night.

I can sit through 4 hour cinema shows, 8 hour flights. Zero RLS.

There is a treatment out there that will work for you. Good luck.

[Doped in reply to Joolsg]

Thank you, it's wonderful to think that this will get easier, it's a lonely road and the reassurance is much appreciated.

[SueJohnson in reply to Doped]

The equivalent dose of ropinirole is .75 mg so if you don't want to suffer more than necessary it will take you 6 weeks before you are off it. Or using the patch cut the remaining one in 3 parts and reduce by 1 part every 2 weeks.

[Doped in reply to SueJohnson]

Thanks for that Sue, I think I've been over eager to hurry things up and it's been backfiring so I'll slow the tapering down and hopefully in 6 weeks I'll have finished with dopamine agonists for good.

[SueJohnson]

I agree with Joolsg. It is a dopamine agonist like ropinirole and pramipexole.