Avoiding DAs: Hi ... I have moderate... - Restless Legs Syn...

Restless Legs Syndrome

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Avoiding DAs

MrNigam profile image

Hi ... I have moderate symptoms of RLS (some sensation in legs all day, aggravates at night, usually go the sleep by 3 am) and have been suggested ropinirole by my GP.

Is there an RLS management approach that can avoid DAs, thus augmentation risk? Or, given the progressive nature of the disease, in the long term DAs (thus risking augmentation) are unavoidable?

many thanks!

11 Replies

if this is going to be your first medication for rls then I would stay away from dopamine agonists. they can make your rls permanently worse.

Go for gabapentin, gabapentin enacarbil (Horizant), or pregabalin (Lyrica) before even thinking about a DA! Way less risky than ropinirole.

Another thing you can do is have your B12, vitamin D, and magnesium checked. Definitely have an iron panel done (including ferritin). A deficiency in any of those can trigger RLS.

Good luck :)

MrNigam profile image
MrNigam in reply to mmjxc

Thank you @mmjxc for your reply. Awaiting Vit D results. Have started on Mg supplements, not much improvement though.

Good tip on B12, will ask for it now.

The first two thing to be considered for RLS is iron therapy. The second is to identify if anything's making it worse.

Then you could consider medication.

Internationally it's now recommended that the first medication that should be tried is either pregabalin or gabapentin.

These are not dopamine agonists.

Please read a comment I posted earlier this day for more information.

Follow this link

healthunlocked.com/rlsuk/po...

MrNigam profile image
MrNigam in reply to

Thank you Manerva, for your reply and for your detailed post that you've shared.

The post was really helpful for someone like me: at an early stage of the condition and still researching.

Thank you again and hope you have a restful, sleep-filled holiday season.

Like others have said I’d make sure you have especially iron ( ferritin ) checked & make sure your dr understands that what is usually regarded as normal is way too low for rls.But, as it’s often a progressive condition I would say from personal experience to start no treatment till it is essential & until it is interfering with your life & ability to function.

I never took a DA & started Pregabalin for another condition & found by chance it helped my RLS ( at a time it was not yet recognised as a treatment ). I thought it was a miracle & bliss. At the time I too usually got to sleep around 3am.

I think it may have permanently worsened my RLS ( even now off it ) which is now often still on the go at 7am or later.

I would start nothing till you absolutely have to.

MrNigam profile image
MrNigam in reply to

Thank you. Indeed, I won't start on any medication, unless I have to.

Re Pregabalin worsening RLS: I came across this study that monitored a group for 1 year, that took pramipexole vs pregabalin.

hopkinsmedicine.org/neurolo...

The lot that took pregabalin didn't develop any augmentation, unlike those that took pramipexole.

May I ask, how long did you take pregabalin before your symptoms worsened?

in reply to MrNigam

Quite a long time. That’s the problem with studies. A year isn’t necessarily enough. I took it way way back before it was recognised to be a treatment. I wrote to the company who make it saying what I’d noticed & asking if they knew & they said they had had anecdotes & were going to do a trial. I had never heard of augmentation & thought the effect was just wearing off or I was naturally getting worse ( which is still possible but my gut feeling is it was augmentation ). Gradually over a few years I asked to increase the dose. I never got beyond 150mg due to side effects. It came on earlier in the day ( still does & lasts longer ) & spread to other areas. It was hard to come off. My suggestion of caution is because if it had caused a permanent worsening I wouldn’t have taken it if I’d known. As I said I took for another reason - pain for a new neuropathy & thought it was a happy accident. The one thing it did do though was to help me remain at work. But I would give my eye teeth to go back to the level of severity it was at that time.So , I would only take a treatment if you have tried all other simpler options, you can’t stand it & it is interfering with your ability to live a normal life

MrNigam profile image
MrNigam in reply to

Thanks again for that advice. I'll take heed.

Absolutely agreed, given research in this thing is at infancy patient experience and advice is all important.

Happy Holidays.

Hi, sorry you are suffering. There is some very good advice in these replies. Magnesium and Iron work well for me and I keep my vit D and Bs at the higher end of the scale. Epsom salts in your bath nightly may help, double whammy as magnesium relaxes muscles, helps sleep and the warm bath also helps sleep by allowing the body to cool and trigger melatonin release.

Its well worth trying this before meds, private blood testing is not very expensive, medichecks or thriva are quick which will give you a good indication of where you are starting from.

Good luck

Definitely check your iron ferritin levels. This is the number one thing to try first. Anything below 100 and you need magnesium bisglycinate (gentle iron). DO NOT accept your doctor saying it is normal. Ask for the number. This can be bought from Holland and Barrett. Take one every other night on an empty stomach with vitamin c (orange juice etc). This is more effective than every night. Take this for at least 6 weeks before taking stronger meds. This helps a great many of us on this forum. It may not totally eradicate it but it may be enough to keep you off the meds. Also watch your diet. Any type of sugar is bad. Additives, sulphites gluten, alcohol and many other things make it worse for some.

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