I have suffered from RLS for over 40 years and sadly my GP started me on Ropinerole about ten years ago. I am now slowly trying to reduce my dose (3mg daily) by 0.25mg every couple of weeks.
I have gained a lot of weight over the last few years due to compulsive eating caused by the Ropinerole. Yesterday I was prescribed Mounjaro injections for weight loss. It’s now 4am and my legs are worse than they’ve ever been. Does anyone know if Mounjaro is a trigger for RLS? Thank you.
It's very possible. These injections will soon be widespread and we will soon learn from RLS patients whether they worsen RLS.However, in your case, severe RLS is more likely due to withdrawals.
Here's the withdrawal schedule from RLS-UK website.
Each reduction triggers severe RLS. As you get nearer to zero- the withdrawals get worse. Experts say it's worse than heroin withdrawal.
The RLS becomes extremely severe, all over, and causes violent leg jerking and spasms. You will get little sleep.
You should start a replacement medication when you are down to 0.5mg Ropinirole. Gabapentin or pregabalin are the usual meds. Again- see RLS-UK website for dosing.
And ensure serum ferritin is above 200ųg/L via iron pills or infusions. There's an iron therapy page under 'useful resources'.
In the UK you can take legal action against your doctor for negligence if they failed to warn you about Impulse Control Disorder. There have now been hundreds of successful cases.
I don't know how negligence law works in France, but perhaps you should consider speaking to a lawyer. Impulse eating is a very common side effect.
The RLS-UK website has a study from August 24 showing 11% of respondents were showing signs of ICD.
That's great you have decided to reduce the ropinirole but sorry about the increased symptoms from Mounjaro. It is mentioned on reddit reddit.com/r/Mounjaro/comme...
You might want to wait until you are off ropinirole and your RLS is controlled before resuming the injections or you might ask for a low dose opioid like methadone or buprenorphine.
Do you still have my information on how to take gabapentin or pregabalin? If not I will be glad to give it to you again or you can wait until you are closer to being off ropinirole and ask then.
Thanks for your reply Sue.
I know you’re right and I understand that Ropinerole causes augmentation.
However, the thought of increasing withdrawal fills me with dread. I know it’s what I need to do but I’ve read such awful things about gabapentin and pregabalin side effects and weight gain that these drugs seem just as bad. Also to go on opioids at my age is equally as scary. RLS is just the worst and makes your life hell and dread the future.
For now I will not use any more Mounjaro until I have come off Ropinerole. This is hugely disappointing because it has completely dashed all hopes of me losing weight. What with being so overweight and exhausted due to lack of sleep I’m pretty miserable! Eating and a glass of wine or two at night are my main pleasures!
I used to be slim and fit and full of fun….but now…..
Don't be scared of the side effects of gabapentin and pregabalin. 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.
Pregabalin is more likely to lead to weight gain so I would go on gabapentin instead and even on pregabalin the weight gain is not that much for most.
The change in weight after 12 to 18 months of treatment was +2.9 lb in the pregabalin group, pregabalin at doses > 300 mg/d; The change in body weight after > 12 months of treatment was, +3.6 lb in the pregabalin group doi.org/10.12788/fp.0111
The main reason is that it increases your appetite but with Mounjaro I doubt that will be a problem and I sure hope it doesn't make your RLS worse once you are taking gabapentin so you can use it. I found once my RLS was under control with gabapentin that I can take many of the triggers that would otherwise make RLS worse.
Thanks for your ongoing advice, reassurance and wisdom.
This site is invaluable. 🙏
So I am familiar with this as I started taking Ozempic a couple of years ago to help with weight loss and I take pregabalin and Tramadol for RLS. I found that the first week it really did exacerbate my RLS but then eventually tapered down by the second or third week. I would suggest you give it a try for a couple of weeks if you can stand it and see what happens. It was really worth it for me in the end.
Once you've reduced/stopped the drug that's triggered your weight gain, maybe best to consider a qualified, registered Nutritional Therapist specialising in weight loss as an option to a drug? I can supply European Guidelines that recommend NTs for weight loss, if you wish.
You could well find other health benefits too.
I don’t have any experience of withdrawal from dopamine agonists but I do have rls, mainly controlled with pregablin and iron tablets. I have been taking Mounjaro since last March and it hasn’t made my rls worse. If anything I think it has helped with inflammation and my sleep is less disturbed.
Tramadol for RLS
body weight and rls
RLS for 13 years
CAUDAL EPIDURAL INJECTIONS AND RLS
