Help with withdrawal

[jollyjune]

I am about to start cutting down my Ropinirole from 2mg taking .5mg less per week. Is there anything I can take to help with any withdrawal symptoms.

[Jules1953]

Hello jollyjune

I used Endone (oxycodone) 5 mg to help me reduce my dosage of Pramipexole.

Sifrol (Pramipexole) is also a dopamine agonist.

I could only use the Endone 5mg for approx a month as my Doctor could not continue prescribing it for me.

While reducing my Pramipexole I started to take Gabapentin. The idea was to change over to Gabapentin from the Sifrol to treat my RLS.

The use of Pramipexole had caused terrible augmentation issues. My whole body was jerking and I was not able to sleep at all. I was going down hill quickly.

I am now using Temgesic sublingual 200mcg tablets.

I am still taking half of 0.125mg Pramipexole as I am finding it very difficult to wean off completely.

And I am still taking 100mg of Gabapentin.

The aim is to wean off the Pramipexole and Gabapentin medications completely and just use the Temgesic sublingual 200mcg tablets to control my RLS.

I heard about Temgesic sublingual 200mcg tablets from Shumbah on this site. I take one sometimes two tablets under my tongue when going to bed.

This enables me to sleep through the night.

Kind regards Julie from Western Australia

[jollyjune in reply to Jules1953]

Thank you for all your advice, unfortunately it is almost impossible to see a doctor to discuss alternatives at this moment, due to the pandemic.

Thank you anyway

[Hidden]

I'd suggest you reduce by smaller amounts, say 0.25mg and over longer time, say 3 - 4 weeks.

It seems you are reducing too fast. A slower withdrawal reduces withdrawal effects.

It helps to have something to replace the ropinirole that's not a dopamine agonist.

An opiate can help.

[involuntarydancer]

I would second Manerva and Jules1953.

If I was doing this again, I would reduce by the smallest possible amount (possibly by cutting the tablets in quarters which I appreciate is difficult because they are so small) and would only reduce again after at least 10 days have past. It will take a long time but will be much less of a shock to your system and you might avoid the worst of the awful withdrawals and actually get some sleep.

I would also beg my physicians to afford me some opioids to help when the symptoms become very bad. If lack of sleep builds up, this exacerbates rls symptoms and becomes a problem in itself so it is worth taking a dose of an opioid every few days to ensure symptoms are controlled for a reasonable night's sleep (always providing that the dreaded opioid alerting does not kick in).

[jollyjune in reply to involuntarydancer]

what is opioid alerting. am thinking of getting some CBD Oil to help the withdrawal, it is not easy to get prescriptions in the UK

[involuntarydancer in reply to jollyjune]

Some rls sufferers find that opioids such as oxycontin and tramadol cause them to become alert. They can't sleep at all even though they may be extremely fatigued.

CBD does help some people. It can be purchased over the counter without a prescription in UK. Many chemists and health food shops stock it. It is very expensive. I did not find it useful for my rls. I doubt if it would be strong enough to deal with the greatly worsened symptoms experienced during withdrawal from a dopamine agonist.

[Joolsg]

I wish I had gone more slowly as I reduced in the same way as you and had horrendous withdrawal and PTSD for months.

I would go much more slowly- 0.25mg every 3 weeks. RLS experts say withdrawal minimum time period is 3 months.

I used tramadol to help but to be honest it didn’t help much. I think oxycontin or Buprenorphine might be better.

Cannabis helped me to sleep for 30 mins during the worst stage of withdrawal.

[dklohrey]

I am on a similar journey myself. Originally on 3 mg of ropinirole. I started at 1 mg, then 2 mg and then finally 3 mg over a 20 year period. I too started to get augmentation so I decided to get off of the ropinirole. I went to 2 1/2 mg for 10 days. The first three days left me with about 2-3 hours of sleep a night. Then it got better. After 10 days I went to 2mg of ropinirole. The first night was horrible, with pain shooting down my legs as well as having the typical rls symptoms. Last night was my second night at 2mg and it was much better. Slept about 5 hours, with no pain and little rls. I am supplementing my withdrawal from ropinirole with gabapentin at 200mg. I plan to stay on 2mg for 10-15 days and then go to 1 1/2mg but we'll see.

[bikerboy16]

Hi jollyjune, sorry to hear that you have RLS. I have it for many years now and it is a daily routine for me. I have tried Ropinorole, Pramipexole and now back on Ropinorole. I reached the max dose of all the usual drugs very quickly, I am now on 2 x 2mg ropinorole which I have been having to take earlier and earlier to stave off RLS. Along with co-codamol tablets at about 3 pm and again when I go to bed. I have been on gabapentin, amitriptyline and Imipramine but no combination seems to work for me.

I know you will think, what's that got to do with me, everyone is different so follow your doctor's advice and good luck, don't take all your meds at the time like have done a couple of times, that will f#£& with your head.

[RLSofManyYears]

The trick is to take your time coming down (it took me a year from 4mg to zero - and zero meant literally sleepless nights). I now switch between 0.5mg Ropinirole and 0.25mg Pramipexole every few weeks - based on when I no longer sleep through. The crossover time is usually difficult and I have not found anything to help with that (I've tried Clonazepam to no avail). I'm also on 100mg Pregabalin.

Get your doctor to proscribe smaller dosages of Ropinirole e.g. 0.25mg so that you can cut down more gradually with these smaller amounts.

I hope this helps.

[SMPR]

Hi there, I'm on my 4th week now of weaning myself off Ropinirole. I was on 3mg and have been dropping 0.25mg per week. I was dreading it as this is my 3rd attempt in 7years. This time after reaching Augmentation again, and not wanting to higher my dose, I'm determined to come off it.

The only withdrawal symptoms that I get is in the evenings and through the night or very early in the mornings.

Its not just RLS, I've been experiencing deep muscle pain in the top of my legs and arms and occasional morning headaches. I also get pain in my toes and fingers. But it eases when I move about.

I take 0.50mg of Chlorazepan an hour before I go to bed and it helps calms the nerves in

my arms and legs. I've also been taking Nurofen for the muscle pain. That also helps take the edge off.

During the day, I seem to be okay. It's just when I'm less mobile. I don't like waking up early in the morning, I usually just get up and move about but then find it hard to go back to bed but it's best if I keep mobile.

I know I've only dropped a 1mg and I know that it could get worse as I drop more so I'm going to drop the other 2mg by 0.25mg every two weeks instead of one. Hopefully, my body will get used to the lower dose if I leave it abit longer and the withdrawal symptoms might ease abit.

I'm coping so far, will let you know how I've been getting on after another four weeks. Once I'm off this horrible drug, which I thought was a miracle drug when I was first prescribed it by a Neurologist, I can then look into trying something else that isn't addictive.

I never knew anything about Augmentation. I thought it would work for ever.

Before going on Ropinirole, I tried Gabapentin, Lyrica, Pregabalin and a 24hr Ropinirole patch but none worked as good as Ropinirole.

I'm so disappointed. Hopefully, there might be something new to try. I've had blood tests so I know I don't have an iron dificiency. Ive tried magnesium tablets also. I've even tried putting a bar of lavender soap under my bed sheet, read it somewhere🤔 all to no avail.

It does run in my family though, my father had RLS and my brother and also my daughter had RLS when she was pregnant. As soon as baby was born it disappeared! Hopefully it won't return when she's older.

I will continue with reducing by 0.25mg every two weeks now instead of weekly. If symptoms get worse then I'll do it every 3 weeks but I'm determined to do it so I can try something else. I do think the Clorazapam has helped me alot even at a low dose. It's worth a try. No point being on a drug that is doing nothing for me anymore.

I wish you well and I hope all goes well for you.

[LotteM]

Kudos to you, smpr, for reducing the ropinirole this far. Well done. 👏🏻 And your plan sounds sound, especially the 'play by ear' part of slowing down when things get tougher. When you get to the last bit, you can slow down even further by cutting the pills in half, or even quarters if needed.

Did you try the pregabalin and gabapentin while still on a dopamine agonist (DA) or when you were still withdrawing from a DA? If so, you may want to try again, as it is difficult if not impossible to assess their effectiveness in such circumstances. Otherwise, the only main treatment left is opioids. Get yourself informed about the use of opioids for RLS before you dismiss them.

Also, you write you don't have iron deficiency, but your iron may still be low, as people with RLS can benefit from above average iron levels. Especially ferritin should be well above 100ng/l. Higher is better and iron overload is rare. So make sure you get your actual numbers on all your iron values.

Meanwhile, keep up the good work!