Coming off ropinerole

[Marley7]

After several years on ropinerole, I've made the decision to stop taking it due to the augmentation I've experienced. I'm now down to 0.5mg and I'm really suffering. I'm being woken continuously through the night with symptoms and on average I'm getting 4 or 5 hours of broken sleep. Trying to carry on with a normal life isn't easy at the moment. I'll be dropping my does of ropinerole to 0.25mg on Sunday and I can then begin introducing the pregabalin. I have high hopes that it'll give me some kind of relief.

[LotteM]

Hi Marley, well done so far.

Two things:

-Do consider to slow down. Wait a bit longer for the next reduction (if you think symptoms may settle somewhat) and don’t reduce to 25 mg, but reduce by half a 25mg pill. Or even a quarter.

-Talk to your doctor if s/he will prescribe a somewhat stronger painkiller like tramadol temporarily, until a few weeks after your last ropinerol dose and symptoms have settled a bit (or a bit more). If that doesn’t work, consider buying otc cocodamol (codeine with paracetamol/tylenol) and try these to help deal with the increased symptoms due to the ropinerole reduction. Do mind the max daily dose of paracetamol though.

Hold on. You’ll get there.

[SueJohnson]

I agree with LotteM.

[Joolsg]

Have a look at RLS-UK website, useful resources. Print it off and show your GP to educate him/her.You will either have to slow down, as Lotte suggests, and/or ask for a low dose opioid.

Withdrawal is hell. Hardly anyone gets through it without several months of terrible symptoms.

But, stay strong. You will get through and the symptoms will settle to what they were before Ropinirole.

Take 2 to 3 weeks off work/ social occasions for the weeks after you drop the last dose.

Pregabalin will hopefully cover the RLS.

There are research papers showing that gabapentinoids often do not work for RLS after years on dopamine agonists.

If that is the case, you will need Buprenorphine or methadone. Find out now if Buprenorphine is redlisted in your prescribing area. If it is, obtaining Buprenorphine is a logistical nightmare, but there are ways around it.

And make sure your serum ferritin is above 200ųg/L. And start ferrous bisglycinate if it isn't.

Cannabis really helped me at this stage of withdrawal. It gave me 30 minutes of sleep after 5 days of zero rest/sleep. It's legal now in the UK, but expensive. You can get it from Curaleaf clinic.

app.curaleafclinic.com/proc...

[Marley7 in reply to Joolsg]

Hi. Thanks for the info.

Unfortunately I think my doctor thinks I'm slightly neurotic. I've tried to express the severity of my symptoms but she clearly doesn't get it. I actually noticed recently that on my medical records it says

Condition: RLS.

Severity: Minor

There isn't a day/ night that I don't have symptoms, this just goes to show how little she understands the condition.

I've just had my serum ferritin checked and it was 31ug/L. My doctor has prescribed an iron supplement.

I am only getting a few hours of sleep because I'm taking citalopram.

[Joolsg in reply to Marley7]

I'm not surprised. Most doctors are completely ignorant of the scale of suffering.Fill out the IRLSS chart, post it to her and explain that your RLS falls within the severe category.

And you ideally need an iron infusion. Your ferritin is far too low.

If you live near Salford, Tooting or Truro, you can get an iron infusion on the NHS. Otherwise, you would have to pay privately.

Prof. Toby Richards will arrange infusions in London or Manchester for around £800. The Iron Clinic.

The Iron Clinic

020 3875 8171

g.co/kgs/SQNujtb

[Joolsg in reply to Marley7]

The citalopram will trigger/worsen RLS, but wait until you're through one withdrawal before you get off citalopram.Safe alternatives are trazodone or wellbutrin, but the latter is only licensed for smoking cessation. If you find a good doctor/neurologist, they'll prescribe it while helping you reduce the citalopram.

[Marley7 in reply to Joolsg]

Thank you. I actually meant clonazapam not citalopram. I do take citalopram but have reduced to 10mg. The clonazapam is definitely helping but it's short lived, usually just a few hours before rls symptoms wake me up again, but at least I get a little respite.

I really appreciate your responses. Having someone listen to me and understand is invaluable at the moment.

[SueJohnson in reply to Marley7]

An iron infusion is best, but your can take the iron while you wait. 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.

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 or after 8 weeks if you have an infusion.

Which iron supplements were you prescribed?

[Marley7 in reply to SueJohnson]

I've been prescribed ferrous sulfate 200mg twice daily.

[SueJohnson in reply to Marley7]

There is no point taking it twice daily as when you take it hepcidin is released which prevents you from absorbing iron for 24 hours.

Also as I mentioned above research has shown more is absorbed if you take it every other day.

[Marley7 in reply to SueJohnson]

Thanks Sue. Do you think it would be OK to take 400mg of ferrous sulfate in one go, every other day?

[SueJohnson in reply to Marley7]

Yes - in fact I recommend it as your ferritin is so low.

[Kaarina Administrator]

Here is the link: rls-uk.org/useful-resources

[RLSofManyYears]

Hi, it took me a year to reduce from 4mg of Ropinirole and it was one of the worst years of my life. However I'm now on Pregabalin and Buprenorphine which, although I still don't sleep well, gives me better sleep at night.I think you can also start Pregabalin before you finish the Ropinirole. That should give you some relief.

[Marley7 in reply to RLSofManyYears]

I took your advice and have introduced the pregabalin now that my ropinerole dose is lower. It has actually improved my symptoms and I've managed to get 5 hours of unbroken sleep. I could cry I'm so happy! Thank you.