Ropinirol

[jaime77]

Hi! I’ve been taking 0.75mg for RLS for about 4 months now, it helps with the RLS but I’m having terrible insomnia with it, has anyone else experienced this? I can fall asleep no problem but struggle staying asleep 💤

[sweetiepye]

iF YOU READ SOME OF THE OLDER POSTS YOU WILL FIND A WEALTH OF INFORMATION ON RLS AND EVERYTHING CONNECTED WITH IT . iT SOUNDS TO ME LIKR YOU MIGHT WANT TO GET OFF ROPINIROLE . sORRY FOR CAPS.

[jaime77 in reply to sweetiepye]

Thank you I’ll have a look

[Shellbearclark]

No. But I do with horizont

[Hidden]

Although ropinirole, like all dopamine agonists, (DAs), can be very effective, at first, it can cause early waking.

In addition, it doesn't seem as if whoever prescribed you ropinirole warned you about the high risk of severe complications DAs can cause. Loss of efficacy and augmentation are very common. Impulse Control Disorder (ICD) is not as common.

Internationally, RLS expert organisations no longer recommend DAs as the first treatment for RLS. They recommend an alpha 2 delta ligand, either pregabalin or gabapentin.

The advantage of these is they are much less likely to have these complications and don't cause an ICD.

Furthermore, generally speaking they are more likely to help sleep, despite what any individual might say.

In addition your doctor could carty out tests for iron deficiency, i.e. serum iron, transferrin, ferritin and haemoglobin.

If your haemoglobin is low you have iron deficiency anaemia. However, even if your haemoglobin is normal then if your ferritin is below 75 then you may benefit from iron therapy.

Please see this article.

sciencedirect.com/science/a...

You could also check to see if you're taking any other medicines to see if they could be making your PLMD worse. The main culprits are antidepressants and sedating antihistamines. There are many others.

I'd suggest your best option is to start taking pregabalin or gabapentin and stop taking ropinirole.

Great caution must be taken in weaning off ropinirole because it can cause severe withdrawal effects. Since you're only taking 0.75mg and only taking it a few months you may not find this too difficult. Leaving it longer or increasing the dose will make it more difficult.

You will find the following web site very informative. It is intenfed as guidance for GPs so you can refer your GP to it.

cks.nice.org.uk/topics/rest...

[jaime77 in reply to Hidden]

Thankyou so much for your advice and reply..I do take fluoxetine in the morning for anxiety and depression but it really helps me cope so I couldn’t imagine stopping that, also since I’ve been taking ropinirol I can’t stop eating!! Two years ago I had my ferritin levels checked and they where 27 but the doctor said that was normal. Can Gabapentin cause augmentation and weight gain? I’ve suffered with RLS for 20yrs since my first pregnancy

[Hidden in reply to jaime77]

Fluoxetine can make RLS worse, but if you really need it then that's a priority.

As you can see from the article about iron therapy, although a ferritin level of 27 is considered "normal", it is much too low for somebody with RLS, it needs to be at least 100 and ideally over 200.

Your doctor is apparently unaware of this, which isn't unusual. In which case they may be quite ignorant on how to manage RLS altogether. That's not unusual either.

Unfortunately, it seems you are one of the few unlucky people who suffer an Impulse Control Disorder (ICD) through taking a dopamine agonist, (DA). Compulsive eating is one form of ICD. Others include gambling addiction, shopping addiction and hypersexuality.

Your doctor should have warned you about this. It should also be on the patient information leaflet.

In which case you must stop taking the ropinirole.

Pregabalin/gabapentin can cause weight gain, but not for the same reason. They do not cause an ICD so overeating will be easier to control. An ICD causes a loss of control and if you continue taking ropinirole this may get worse.

They rarely cause augmentation, hence this is why they're recommenfed in preference to dopamine agonists.

A warning! People who suffer an ICD caused by a DA are more likely to suffer from DAWS, (Dopamine Agonist Withdrawal Syndrome). This can cause both physical effects and mental health problems which can last for months. Hence you need to be significantly more careful in weaning off the ropinirole.

I'm afraid it sounds as if you need to educate your doctor about these things. So you need to inform yourself about them first.

You can read about augmentation, ICD and pregabalin/gabapentin in the NICE CKS.

Here is some information about DAWS

pubmed.ncbi.nlm.nih.gov/236....

It appears your doctor is doing you more harm than good!

[jaime77 in reply to Hidden]

Thankyou! I’m definitely coming off the ropinirol, I’m starting to wean myself off it tonight, I take 3x0.25mg a night, if a reduce it over 3 nights by 0.25mg do you think that will be ok?

[Hidden]

NO!!!!!

I'd strongly suggest you reduce it by 0.25 mg, OK, but then wait at least 2 weeks before reducing it again. You may experience withdrawal effects and hopefully these will be temporary.

If after 2 weeks they haven't lessened, then wait for 4 weeks. 4 weeks is preferrable anyway.

Better still, especially as you have an ICD, reducing by 0.125mg may be desirable. Every 2 - 4 weeks.

It has been suggested by a renowned US RLS expert that the minimum time for withdrawing ought to be at least 3 months.

[jaime77 in reply to Hidden]

Thankyou so much for your help and advice it’s much appreciated

[Birdland]

I’ve been taking Ropinirole for 16 years. I call it “the devil”. I stated at a very small dose and ended up taking 8 mg a night with only a couple hours relief here and there through the night. Two years ago I tried to stop taking this horrible drug. Under a doctor’s care I went cold turkey and took methadone as a replacement for 6 weeks. I got very sick because I couldn’t tolerate such a strong opioid. I went back on Ropinirole out of desperation. The good news is I needed only 4 mg a night because I backtracked on the augmentation. Then after raising my ferritin iron through infusions I went down to 2 mg a night. But then the augmentation started up again so a month ago under the same doctor’s care I started trying to get off Ropinirole again. I’m still going through the process at present, which the doctor calls “not for the faint of heart”. Ropinirole never gave me insomnia but through the years it made my RLS symptoms multiply by leaps and bounds. I strongly recommend you get off Ropinirole. In my opinion it is an evil drug.

[jaime77 in reply to Birdland]

Thankyou, that sounds horrendous! Yes I’ve only been taking it for a couple of months but I’ve started the weaning process..if you come of ropinirol what will you try instead?

[Birdland in reply to jaime77]

The doctor I see for RLS here in Southern California, Dr. Mark Buchfuher, believes strongly in using opioids to make it possible to get off Ropinirole. As I said, the first time I tried 2 years ago he put me on Methadone which I couldn’t tolerate. This time he first put me on Oxycodon but I couldn’t tolerate that either. So he went to Morphine. It sounds scary but it worked for me. I started by taking 3, 15 mg tabs a night. That was about 12 days ago. After about a week on Morphine (no Ropinirole I was able to experiment with reducing Morphine. For the last 3 nights I got through on just 1 tab. I am hoping to be able to reduce it more. If not, 15 mg of Morphine will be what I stay on to manage my RLS. Not an exciting thought but better than what I’ve come from. My doctor does not see a problem with this. Time will tell. I’m just so happy that it looks like I might have actually succeeded getting off Ropinirole. Sorry it took so many words to answer you question but I felt a history would be beneficial. (And that is the abbreviated version!) On a different note, I also took fluoxetine, for 25 years. About 4 years ago I read that Fluoxetine could cause RLS to get worse. I was so desperate that I quit fluoxetine. I was disappointed that my RLS didn’t get better but then I learned of Ropinirole augmentation and realized nothing I would try while taking Ropinirole would make any difference. Before I started Ropinirole my RLS was manageable while taking a low dose of fluoxetine. But then I upped my dose and added hormone replacement. My legs went through the roof and I asked my doctor at the time to prescribe Ropinirole, which I had seen advertised on tv. The rest is history. Bottom line is I would go back on fluoxetine in an instant if I could but, for me, calming my legs is my #1 priority. I also can’t go near caffeine and can only tolerate 1 alcoholic drink a week. Good luck to you on your journey.

[rls-insomniac in reply to Birdland]

Hi Birdland, you and I had a similar experience. At my worst I was taking up to 10mgs of ropinirole. It took me a year to get off it. Initially, I did it myself but once I'd got down to 3mgs I was in a terrible state. Once I'd managed to convince my GP, I was prescribed opioids to get me through the last 3mgs. It was hell on earth, and there were times when I thought I just couldn't take it anymore. Well I did it and have been ropinirole free for about 7 months or so. I will never take another DA again! As you say, it's an evil drug!

[Birdland in reply to rls-insomniac]

Wow, I give you credit for being able to go from 10 to 3 mg by yourself! I understand your “hell on earth”description of opioid treatment. I have only been completely off Ropinirole for 12 days. After wild attempts at trying other opioids, Morphine was the one that worked for me. 12 days ago I started by taking 3, 15mg tabs I am now down to 1 a night. I’m hoping to reduce it further but depending on RLS symptoms I may have to stay on a low dose indefinitely. I think in another few weeks I should know where I stand. I see a doctor here in Southern California, Dr Mark Buchfurer, who has a lot of experience with all this so I will follow his advice. Do you take anything for RLS now?

[rls-insomniac in reply to Birdland]

Hi Birdland. Just woke up briefly and saw your reply. It's 2.00 am here in the UK. 😊.Sorry, but I meant to say it was hell on earth re my withdrawal from ropinirole And looking back, I'd say it was worse than that! I was taking gabapentin and oxycodon, which initially helped a little bit, but ultimately I was still suffering rather badly.

Wow, you are so lucky to be under the care of Dr Buchfurer. He's very highly thought of on this forum! Unfortunately, we don't really have anyone of his calibre here in the UK as we are years behind in the treatment of RLS compared to the US. Most of us have had to battle our way through to get our GP's to prescribe anything remotely suitable to help treat our symptoms. Most of them just don't have a clue!

It's taken about 6 months for me to find the right combination of meds to manage my symptoms. Currently, I'm on 300mgs of Pregabalin and 400mcgs of Temgesic (buprenorphine). I did have to fight to get the Temgesic as it's rare for a consultant to agree to prescribe it over here. After a bit of a shaky start, it's working well and most importantly, I'm getting about 6-7 hours sleep a night now, although I do have periods of wakefulness a few nights a week. But rarely with symptoms. It's usually because I need a bathroom break! 😁.

I hope that your recovery goes well. If you need to take meds then don't worry about it. I think that because I've been taking ropinirole for such a long time and at such a high dose, my dopamine receptors have been permanently damaged. I wonder if Dr. B would agree?

All the best. 🤗.

[Birdland in reply to rls-insomniac]

RLS-insomniac, Most doctors here don’t have a clue either. My GP refused to prescribe me any opioids. I was lucky to find Dr. Buchfurer although I wasn’t very happy with him a couple years ago when I got so sick on Methedone. But my faith in him has been restored and I appreciate that he really has a desire to see his patients succeed. Wouldn’t it be nice if more research was done so that this awful affliction could be more understood! I will ask Dr Buchfurer about dopamine receptors possibly getting damaged. Wishing you the best.

[rls-insomniac in reply to Birdland]

I think it's scandalous that doctors and consultants are so ill-informed when treating RLS sufferers . So many of them prescribe medication that ultimately exacerbates symptoms and furthermore, have little or no idea how to treat them when they do. I live in hope that at some point in the future student doctors will be taught about RLS at medical school. As you say, there really needs to be so much more research undertaken.

[DicCarlson]

Low ferritin could indeed be the linchpin of your RLS. It was with me - severe RLS, on and on. Docs offered me DA, but I refused (knowing the side effects). Ferrous Bisglycinate Chelate raised my ferritin from 49 to 105 in 3 months. Severe RLS went away in the first week!

[jaime77 in reply to DicCarlson]

I’ve been prescribed ropinirol but don’t want to take it! Trying to get through with CBD oil

[Hidden in reply to jaime77]

If you want to use A CBD oil, it might be a good idea to research it first. They can be expensive.

The term "CBD oil" covers a host of different products. Their effectiveness depends on their particular content.

There's no evidence that any of them work. From other members comments, it seems the products most likely to be effective have a relatively higher THC content.

These aren't legally available in the UK, unfortunately.

[jaime77 in reply to Hidden]

I’m stuck between a rock and a hard place, I don’t want to take ropinirol, I might give the Gabapentin a try

[Hidden]

It's well worth trying, but you'll have to be patient. First it takes 3 - 4 weeks to work. Second, you have to have a sufficient dose. Third, it's not very effective at relieving augmentation or DA withdrawal effects.

You can start it before stopping ropinirole, but if it doesn't seem to be working you have to continue it until after you've stopped the ropinirole.

[jaime77 in reply to Hidden]

I’ll give anything a go!

[jaime77]

I’ve been prescribed 300mg Gabapentin! I’m hoping it will help me sleep to, starting them tonight, I’ve also noticed on ropinirol that my symptoms have started getting earlier and earlier!

[Joolsg in reply to jaime77]

The average dose of Gabapentin for RLS is 900mg taken in the evening.

It’s worrying that you are already suffering augmentation on the Ropinirole but that makes sense because you had Impulse Control Disorder on it and the 2 are linked.

As advised by Manerva- get off the Ropinirole by reducing 0.25mg every 2 weeks.

You could ask your GP to increase the Gabapentin to the average dose of 900mg as well.

[jaime77 in reply to Joolsg]

Thankyou, he’s also told me to book in for blood test to test my ferritin levels at last!!

[Joolsg in reply to jaime77]

He should have done that before prescribing Ropinirole under current NHS guidelines. As Manerva advises- levels should be above 100, preferably 250. Fastest way to raise levels is by IV Injectafer iron infusion but if can’t get an infusion, take ferrous bisglycinate EVERY OTHER NIGHT. It raises levels faster than taking every day.