It's 4am and zero sleep tonight

[JenniferBut]

Hi everyone,Update re appointment with prof Brendan Yee at Woolcock. I saw him Wed via video link, lovely chap.

I take lowest dose of sifrol.125mg and dr confirmed I have augmented. Been on it around 2 ish years..

He advised me to just stop completely, and use 300 mg of codiene to help with withdrawals. He reckoned I may not even get withdrawal. I was positive and hopeful.

Then he said to start Gabapentin in a week, gradually increase the dose .

I simply cannot sleep at all, legs are off the charts. This is night 2 now.

How long can I expect this withdrawal??

I am blessed not to have to work but it's not much fun. If it won't last more than a week I will persevere but otherwise I might need to consider a slower taper. I honestly just want to get it over with.😫

I was surprised that he wanted a weeks gap between the stopped sifrol and Gabapentin.. any questions thoughts please 🙏 🥺 🥺 🥺

Jen

🥱😵‍💫

[SueJohnson]

You should not have stopped cold turkey even at that low dose. I suggest you go back on it and let your symptoms settle and then reduce by one half of the .125 dose. Then wait 2 weeks or so. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from the reduction has settled before stopping the last one.

Start 300 mg of gabapentin now although it won't be fully effective until you are off it for several weeks. After you are off sifrol for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.

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.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

[SueJohnson]

Although your doctor is more knowledgeable than many he didn't know what I told you so you might want to print off a copy of the Mayo Clinic Updated Algorithm on RLS which will tell you and he everything about its treatment at Https://mayoclinicproceedings.org/a...

[Joolsg]

Brendan Yee is one of the few knowledgeable doctors, BUT he clearly follows Dr Chris Earley at Johns Hopkins in Baltimore, USA. Dr Earley believes in a quick 3 week withdrawal from Sifrol and a 12 day 'washout period' where you take ZERO meds. He believes it's the only way to see the true baseline RLS and settle dopamine receptors.However, it's a very brutal and difficult way of getting off dopamine agonists.

Most other experts recommend a very slow withdrawal and commencement of gabapentin around 4 weeks before the last dose of Sifrol.

It's up to you. You can tough it out, but you won't get much sleep for 5 days. After Day 5 you start to get an extra 30 mins sleep each day. But the RLS will be very, very severe until you start gabapentin and build up the dose.

The alternative is the slow route, but you still go through pretty tough withdrawals.

[JenniferBut in reply to Joolsg]

Hi ladies, thanks yet again for your great advice. how are these numbers below?

IRON STUDIES

Specimen Type: Serum

Iron (10-30) umol/L 19

T'ferrin(32-48) umol/L 32

T. Sat. (13-45) 30

Ferritin(30-165) ug/L 45 96 89

[SueJohnson in reply to JenniferBut]

Regardless of whether you ferritin is 45, 89 or 96 - and do clarify, your may benefit from an iron infusion which will help your withdrawal.

If you can't get one then 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. 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 or at least take it in the morning if you take your iron at night. 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. Ask for a new blood test after 3 months.

If your ferritin is 45, take twice the amount of iron I gave above if you can't get an iron infusion.

[Joolsg]

Can you clarify the serum ferritin? Youve put 45 96 86.

[JenniferBut in reply to Joolsg]

Hi, 👋 Most recent is 86. The others were past tests over a few years.

I'll keep taking the iron supplements.

[Joolsg in reply to JenniferBut]

Excellent. Keep supplementing as per SueJohnson schedule.

[JenniferBut in reply to Joolsg]

Thank you 🙏 You guys are amazing 😍