Hi from Australia 🦘 : Hi everyone Can... - Restless Legs Syn...

Restless Legs Syndrome

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Hi from Australia 🦘

JenniferBut profile image
11 Replies

Hi everyone Can I please have some expert advice.

I am getting ready ( and very scared) to come off sifrol and try Gabapentin. I'm on 0.125mg. for last 2 yrs. I'm augmenting, not too badly but enough to be bothersome. I am getting RLS earlier in the day now and some during the night. I am aware of my food triggers, drug triggers and I'm supplementing as advised here with elemental iron to try and increase. It's " normal " apparently but we know that may not be enough in the brain.

I have a script for Gabapentin 300mg.

I have a razor ready to start shaving off the sifrol slowly.

Do I start Gabba now? I read somewhere that I should. I want to make sure I can tolerate it as well because I am super sensitive to meds/ foods and environment. If I can't then I will pursue a sleep specialist again with more vigour.

I understand that the Gabba won't work until the DA is cleared from my body.

Should I just have a hell week or so and just drop down dose of sifrol super quickly to get it over with with?

The Doctors here won't prescribe anything strong to help with withdrawals so that's off the cards.

Docs here have zero advice or idea. It's difficult. I have been trying to see a specialist but I'm having no luck getting an appointment. So far I have been to one who was useless, he told me to take more DA, and stop SSRI. This is not a quick thing to stop as discontinuation syndrome is full on. It will take another year to fully get off the SSRI. That's a whole other topic.

Thanks

Jen from Canberra Australia

Soon to be moving to Cairns

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JenniferBut
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11 Replies
SueJohnson profile image
SueJohnson

You can start the gabapentin now since one is supposed to start it 3 weeks before one is off sifrol and with luck you will be off it in a few weeks.

No don't drop down super quickly.

JenniferBut profile image
JenniferBut in reply to SueJohnson

Hi Sue, is the dosage meant to start at 300mg of the Gabba? Taken at night time correct?

LotteM profile image
LotteM in reply to JenniferBut

That is the standard, but 100 mg for older people. As you are supersensitive as you wrote, you may also want to start lower to see whether you can tolerate the gabapentin. Then build up slowly to about 900 mg. According to common experience, you can only assess the effectiveness of the gabapentin once you are completely off the sifrol and any withdrawal has settled a bit.

Good luck. I hope the reduction and switch go relatively smoothly and will be effective.

SueJohnson profile image
SueJohnson in reply to JenniferBut

Correct. It's been awhile since I gave you advice so let me repeat it. Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you after you are off pramipexole for several weeks. 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. If you take magnesium, even in a multivitamin, take it at least 3 hours before or after gabapentin as it interferes with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason .

You should be closely monitored as gabapentin can raise the bad LDL and lower the good HDL.

Madlegs1 profile image
Madlegs1

Good luck with it all,Jen.

Go down as slow as possible, by as small amounts as possible.

You will get there.

You have a great attitude.

👍💚

Jules1953 profile image
Jules1953

Hello Jen, I live in Perth, Western Australia and I weaned off Sifrol/pramipexole about 3 years ago. I now take Temgesic which is a low dosage of Buprenorphine. My doctor will not prescribe this for me. But I see a sleep specialist Dr Richard Warren in Perth who prescribes for me. I did try the gabapentin but it did not help with my RLS. Unfortunately I took dopamine agonist medications for many years and was eventually on a very high dosage. I went through a terrible time once I got down to 0.125 mg even though I slowly weaned off the pramipexole. I got through the last stage by taking 5 mg of Endone, oxycodone. This helped with the horrendous augmentation. You could reach out to Dr Richard Warren, sleep specialist in Perth via a phone call.He attends seminars overseas with the top specialists in treating RLS. I have suffered with Restless legs for 53 years and he is the only specialist I have come across who understands how to treat RLS.

My heart goes out to you. Kindest regards Julie

JenniferBut profile image
JenniferBut in reply to Jules1953

Hi Julie Thanks so much for your kindness.

I will give his rooms a call.

I really appreciate your response to my post

Jen

Joolsg profile image
Joolsg

Shumbah is in Australia and takes Buprenorphine. There are a few others in Australia who are also able to get opioids.As you're sensitive to meds, yes you could start gabapentin now to ascertain the side effects. But, bear in mind dizziness and leg swelling and oedema are common side effects, but they do settle after around 6 weeks, so it's worth sticking it out. The gabapentin takes 4 weeks to be fully effective and as you're likely to be off sifrol by then, it makes sense to start it now.

There are 2 ways to get off Sifrol. Fast, over 3 weeks, or slow, over several months.

As you're on 0.125, you could reduce quickly by dropping half the pill now and the other half in 2 weeks. But most people do need a low dose opioid to settle the withdrawals before dropping another dose.

Listen to your body. Slow down the process if it gets too difficult. If cannabis is available, that can help.

Also, ensuring serum ferritin is above 100ųg, preferably 200ųg/L can reduce withdrawals.

Good luck.

JenniferBut profile image
JenniferBut in reply to Joolsg

Hi and thanks for replying Dr Shumbah, can you please send me more information so I can look into an appointment further?

Thanks

Jen

Joolsg profile image
Joolsg in reply to JenniferBut

Sorry Jennifer,Shumbah is a member of the forum. I think she's in Brisbane. She takes Buprenorphine in Australia and may be able to give her the address of her doctor.

JenniferBut profile image
JenniferBut in reply to Joolsg

Ahhhh!!

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