Ropinerole query: Hi all. So I’ve been... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinerole query

Alfsdad86 profile image
10 Replies

Hi all.

So I’ve been thinking, I currently take 2mg (2x1mg) ropinerole 1 hour before bed for PLMD, Currently it hits me like a truck and I go to bed like a zombie, I’m having the worse nights sleep I’ve ever had, waking up multiple times with really sore dry throat and unbelievable sweating, and I’m equally zombified in the mornings. My ‘twich’ possibly RLS but it’s only in my torso, shoulders and neck, is getting quite bad early evening. I’m debating taking 1mg early evening then the other an hour before bed, hoping it’ll ease the twich and morning symptoms. Does anyone else do this, is it something I should discuss with my doctor first?

Many Thanks In Advance

Sam.

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Alfsdad86 profile image
Alfsdad86
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10 Replies

If you're twitching when you're awake it is most likely RLS rather than PLMD.

PLMS. i.e.PLMD when sleeping is much more common than PLMD when awake.

The symptoms you describe sound like you're beginning to suffer augmentation. To an extent it's irrelevant whether it's PLMD or RLS.

In which case it's inadvisable to increase the Ropinirole.

Ropinirole, like all dopamine agonists can cause augmentation.

I suggest you read the information about augmentation on this site and then decide your next step.

Alfsdad86 profile image
Alfsdad86 in reply to

Thanks for the reply, PLMD is the diagnosis I’ve been given, I was actually being tested for sleep apnoea, the evening ‘twitch’ is something I’ve always had, even before diagnosis rather than something that’s gotten worse since being on the medication, leading me to believe it’s not augmentation it’s just a case of it happens before I take the medication if that makes sense?

in reply toAlfsdad86

Hi yes that does make sense.

However, the twitching is still most likely RLS and it's still inadvisable to increase the ropinirole.

The higher ther dose, the greater the risk of augmentation.

Alfsdad86 profile image
Alfsdad86 in reply to

As always, thank you for the brilliant answers you give. However, the question I was asking is does anyone stagger their dose, rather than taking it all at once? I’m already on 2mg a night I just take them as 2x1mg pills. I was wondering if I should take 1mg earlier, like with tea, then take the other an hour before bed. I know we aren’t doctors, but thought I’d see what others do.

in reply toAlfsdad86

Sorry I misunderstood.

Are you sure the dry throat and sweating is due to ropinirole?

Have you been tested for sleep apnoea?

Alfsdad86 profile image
Alfsdad86 in reply to

I was tested at home for one night using a pulse oximeter, the result of which was ‘insignificant apnoeas’ and a diagnosis of PLMD.

The sweats and dry throat I’m just assuming is a result of ropinerole as I’ve read they are a side effect, and the dry mouth comes on 45 minutes after taking the medication.

I personally think I do have sleep apnoea, as my partner has observed me gasping and has said my snoring is a lot worse, however I’m not sure what to do as my doctor doesn’t really care/doesn’t know anything about it, and the hospital didn’t even let me see a consultant, from me speaking to my doctor to diagnosis was all done via phone and letter, I never got to speak to anyone.

I took a private test that took pulse and breathing measurements, over a week, that said I have moderate sleep apnoea, but the hospital totally disregarded it in favour of their one night test that only monitored my pulse.

Sorry for the long reply :)

in reply toAlfsdad86

Don't worry about making long replies, nobody should apologise for that. I don't think your posts are long in any event.

I'm frustrated for you that you appear to be getting less than an acceptable standard of care.

I read of other members of this forum being referred to sleep clinics which they attend for "polysomnography" and getting a proper diagnosis. I don't know why it is that some people, like that get a good service, then you don't get a good service.

Reading back through your posts, it does appear you've been given some confusing information.

Just to clarify, it does appear that you have PLMS, Periodic Limb Movement when Sleeping. PLMS usually doesn't fully wake you, and so you may not be aware of the leg movements. A proper polysomnography test in a sleep clinic would record leg movements and their frequency.

It also appears that you have RLS, which you describe as "twitching" during the evening.

As regards sleep apnoea, again a polysomnography test would pick that up. A pulse oximeter doesn't just detect your heart rate, it's main function is to detect your oxygen level. If, for some reason, you're not breathing properly then the amount of oxygen will fall.

There are two main types of sleep apnoea, and I guess you might know that you have some symptoms of "obstructive" sleep anoea. e.g. snoring and gasping. It may not be to such a degree that your oxygen levels fall, but it does sound like it may be disturbing your sleep.

Along with your PLMS.

When it comes to the ropinirole, whether you take the whole dose at once or split it, it doesn't really appear to be working. It seems to be causing drowsiness, but not controlling RLS/PLMS symptoms.

I'm not clear if you get the dry mouth when you're still awake or if you get it after being asleep for a while. A dry mouth isn't usually listed as a side effect of ropinirole. You can get a dry mouth from sleeping and breathing through your mouth.

"Night sweats", isn't usually listed as a side effect either. There are various causes which include menopause, hyperthyroidism and sleep apnoea. I wonder then if you've had a thyroid function test.

Although, with hyperthyroid, you would also have a rapid pulse..

After all that's said, side effects or not, it doesn't appear as if ropinirole is helping you and may be causing more problems.

In which case it may be better to switch to an alternative medication for your RLS/PLMS.

I'm sorry, this might be of little help, your problem seems to be the ignorance and lack.of concern of your doctor. I'm not sure how you can get round that.

Perhaps you could change your doctor. At least you could consider making a formal complaint that you don't feel your case is being adequately dealt with.

Alfsdad86 profile image
Alfsdad86 in reply to

Many thanks for such a thorough and in depth response. I have had my thyroid, and many other things tested recently due to other medical conditions and all is normal.

The reason I was blaming ropinerole for the sweating is that it only started when the medication did and I read online

“Ropinirole (Requip), used in the treatment of restless leg syndrome and Parkinson's disease, is a well-known cause of excessive sweating. Why? Ropinirole activates dopamine receptors, which leads to increased sweating.”

The dry mouth start while awake after taking the medication, but gets a lot worse throughout the night, although on saying that, it’s been better the past 2 nights.

I’m a 33 year old male, so I believe menopause is out of the question 😁.

Once again, thanks for the information, I think I’m going to return to the doctor and push for a better assessment.

in reply toAlfsdad86

You may still have male menopause ahead of you :-), but night sweats doesn't come into that.

in reply toAlfsdad86

I used to take 1 mg ropinirole about 6 pm (I have a fairly bad case of RLS) which would just barely get me through the night, in addition to an iron supplement every day. However, about a year ago, I overdosed on the iron and landed in the hospital with terrible side effects. Now I am on ropinirole only, 1/2 mg around noon and another 1/2 mg around 6 pm, and this seems to be working perfectly, with NO iron. This is what my neurologist has prescribed for me. It has been my regimen for about a year now and I don't have the need to increase dosage at all. No RLS at all.

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