I have started weaning off ropinirole

[GrandmaKarey]

Just an update since it’s been a few months.

I got tired of waiting months to see the RLS ‘specialist’ at the sleep clinic where they treat my sleep apnea. I didn’t know it at the time, but the LPN I usually see about twice a year was well-versed in RLS. The last time I saw her was before I found this forum and learned how awful Ropinirole was, so we didn’t even talk about it.

Previous to seeing her last week, I had started in mid-December reducing my Ropinirole dosage. I was at 4mg and went to 3.75 for about 5 days. I didn’t have any withdrawals at the time, so I went down to 3.5. Ive had some issues early in the evening which I don’t usually have, but still not unbearable. It’s been about 2 weeks now and I’m about to go down to 3.25.

I’m still taking 400mg of Gabapentin which I’ve been on for years. After seeing the LPN, she mentioned raising that dosage, while lowering the Ropinirole, but so far hasn’t made any changes.

I’m nervous about lowering the Ropinirole more, and not raising the Gabapentin yet. Maybe I’m overreacting and just need some reassurance 🤦‍♀️ but I know this is going to be a long, unpleasant few months.

Thanks for listening.

[Madlegs1]

Unfortunately the Gabapentin will be of minimal help in the withdrawal process.

Just go down very slowly, by tiny amounts, and be ok to rest awhile when it gets tough. Or even go back a step if necessary.

At the final stage ,you will need help-- Clonidine or diazepam for very short term can help ,or tramadol/ codeine.

It will be tough going., but well worth while.

Good luck.

[Oscarcat63 in reply to Madlegs1]

Clonidine is great !!!!

[GrandmaKarey in reply to Madlegs1]

Ok, that helps to know. I was concerned about not raising the Gabapentin, but I’ll stop stressing about that, I already have enough to stress about 😆

[Joolsg]

The gabapentin doesn't stop the withdrawals at each Ropinirole reduction. Only low dose opioids can help with that. Or cannabis. Gabapentin starts to help around 3 weeks after the last dose of Ropinirole.Keep going. You're doing really well.

If it helps- my withdrawals were tolerable until I got down from 4 mg to 1 mg.

So you may be fine with each dose reduction until you get near 1mg.

But however bad the withdrawals are- keep telling yourself that the severe augmented RLS WILL be so much better once you're off Ropinirole.

The daytime symptoms settle and the overall RLS becomes calmer.

That's when you can increase the gabapentin to cover the symptoms.

And ensure your serum ferritin is ideally above 200ųg/L as that will also help the majority of patients.

Good luck. Keep going

You can do this.

[GrandmaKarey in reply to Joolsg]

Thank you so much, I think I just needed to hear it from some of you knowledgeable folks around here. I tell my husband, but he can’t relate.

I do have some hydrocodone on hand from my orthopedist, and also use Cannibas occasionally which gives temporary relief. I’ve only taken 1/2 tab of the hydrocodone a few times for severe knee pain, but I’m glad I have it if needed

The last time my iron panel was done, about 8-9 months ago, my ferritin was only 71. As I mentioned, I didn’t know at the time about the DA’s, augmentation and iron levels that I’ve learned here. The LPN ordered a new iron panel, and I’ve been taking iron for a couple of months now, so I’m hoping the results show some improvement!

Thank you again, you don’t know how much the support from all of you gives me hope after decades of misery.

[Joolsg in reply to GrandmaKarey]

This forum saved my life. My ignorant doctors would have kept increasing the dose. They refused to listen. Had never heard of 'augmentation' & told me off for searching Dr Google!Thank God I listened to Pipps & Madlegs.

I knew it would be hell. It was. But I also l

Knew so many others on here had done it and were doing so much better.

I am so lucky. I managed to get Buprenorphine and now have zero RLS. My life is worth living again.

One day- they will apologise to us for causing such misery and unnecessary suffering.

You will soon be doing so much better.

Xx

[SueJohnson in reply to GrandmaKarey]

What iron tablets have you been taking and how many mg?

[GrandmaKarey in reply to SueJohnson]

Hi Sue,

According to the label, I’m taking Iron 65mg (325mg Ferrous Sulfate), along with Vit C and other supplements.

[SueJohnson in reply to GrandmaKarey]

OK - that's good.

[SueJohnson]

Just continue the way you are doing as the others have said.

[GrandmaKarey in reply to SueJohnson]

Thank you, Sue.

[Bugsycat]

hi I’m doing similar to you, trying to get off Ropinirole. However doing it a lot slower. I was also on 4mg daily and have been reducing but waiting until I feel settled on the lower dose. Sometimes it’s been .5mg every month but my last reduction took me 2 months. I’m now down to 1.5 mg and my doctor has given me oxycodone to help.

I tried once before on a strict regime but it didn’t work and I failed but this time I’m determined to do it

Good luck

[GrandmaKarey in reply to Bugsycat]

I’m envious that you’re all the way down to 1.5! That’s amazing. Thank you for the support.

[Xxsummerxx]

can I ask why do you need Gabapentin as well as your ropinarole . I take 0.5 ropinirole during the day and 1mg at night

[Madlegs1 in reply to Xxsummerxx]

As an alternative to the rop.

It needs to be in the body for about 3 weeks to be effective.

No-one wants to be on a dopamine agonist for any length of time, due to augmentation issues.

[GrandmaKarey in reply to Xxsummerxx]

I’ve been taking Gabapentin for decades for other issues, unrelated to RLS. At this point I’ll do anything to get off Ropinirole, but I misunderstood my provider about increasing Gabapentin, at the same time as decreasing Rop.

[Xxsummerxx]

what’s so bad about ropinirole I’ve been taking it for years 1mg at nights and 0.5 during the day if I need it works well for my RLS

[Madlegs1 in reply to Xxsummerxx]

You are one of the incredibly lucky ones not to be getting Augmentation from prolonged usage of Ropinerol.

I hope you can continue with your experience.

If you find ,at any time in the future, that you find yourself needing to increase the dose _- then DO NOT INCREASE OR CHANGE TO ANOTHER DOPAMINE AGONIST.

Come back here for advice.

All the best.😎☘️

[SueJohnson in reply to Xxsummerxx]

The problem with ropinirole and other dopamine agonits like pramipexole and Neupro is that up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want.. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...