RLS - Advice

[Deathy]

Hi All,

Back again, i have now been to the neurologist and prescribed pregabalin, im now takin 2x 150mg a day, and still on 1x 0.088mg tablet of pramipexole, slowly getting this down and now hit the worse part....

I suffer with pain (ache) all over my body, had different tests and nothing conclusive yet, so looking like Fibromyalgia or similar, the problem is since coming of pramipexole these are getting worse and now at the point of thinking about pramipexole again for the relief, i do keep telling myself it will be worth it in the end.

Pregabalin at present does not seem to be doing anything, is this because im still on pramipexole? which i have been on around 15 years give or take.

Any advice and moral support is appreciated, just want this to end

Thanks

[SueJohnson]

Lots of moral support ! You can do it.

The pregabalin won't help until you are off pramipexole and your withdrawal symptoms have settled.

Do not consider increasing your pramipexole. You might want to go back up by half of a tablet to let your symptoms settle, You may have increased too quickly. Then get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks or so waiting each time for any symptoms to settle. Also ask for a low dose opioid temporarily to help with the withdrawal. Emphasize temporarily to persuade your doctor.

[Joolsg]

Many RLS patients experience severe pain as a symptom. In your case, drug-induced worsening (augmentation) will increase the pain. And as you reduce Pramipexole - the pain will increase.That is normal withdrawal.

No one escapes it.

Do NOT be tempted to go back on Pramipexole. You will never be free of severe RLS symptoms until you are off Pramipexole completely.

So keep reducing.

Pregabalin does NOT reduce withdrawal Severe RLS/pains.

It starts to cover RLS symptoms around 3 weeks after your last dose of Pramipexole.

If you cannot handle withdrawal symptoms- ask your GP for 60mg codeine or 50mg tramadol or 10mg oxycodone to take for 4 or 5 nights after each Pramipexole reduction.

Cannabis might also reduce the pain & symptoms & give you a little more sleep.

Pregabalin 300mg is a high dose. Are you taking it at night only? For RLS you take only at night.

Show your GP the withdrawal schedule on RLS-UK website so they are aware of how severe withdrawal from Pramipexole is.

Unfortunately, no one escapes a hellish withdrawal. But you will be so glad you stuck with it! Pramipexole is poison.

Good luck.

[Deathy in reply to Joolsg]

Hi,

Thanks for the moral support trying very hard not to go back on it and adamant that i wont,

I'm on pregabalin both morning and night, and take codeine 60mg when its really bad even that doesnt always work, ive been on the 1 tablet now for a few weeks, still waiting for these symptoms to reduce but not sure if they will, do you think i should wait longer or push on reducing further ?

[Joolsg in reply to Deathy]

If symptoms are not 'settling' you may be better moving ahead and reducing further.You're young. You may be able to handle a faster withdrawal.

There are 2 ways to withdraw. Slowly- waiting for withdrawals to settle before reducing further. Or the Fast 3 week withdrawal favoured by Dr Earley at Johns Hopkins in Baltimore. His theory is that it will be hell whichever way you do it.

But make sure you arrange time off work/social occasions for the next month/5 weeks.

And cannabis would definitely help the pain.

Good luck.

[Deathy]

Thanks,

I have 4 days in my medication organiser, so once i restock this i will look to reduce down a bit, god help me.

[SueJohnson]

Once you are off pramipexole and your symptoms have settled there is no reason to take pregabalin twice a day as RLS is at night. Take it all 1 to 2 hours before bedtime.

Once your withdrawal symptoms have settled and it works to control your symptoms reduce it by 25 mg every 2 weeks until you get to the lowest dose that controls your RLS. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin" so you are at the upper end and may not need that much.