Anyway to counteract sleepiness from ropinirole?

[SueJohnson]

I am taking ropinirole for restless legs. I am having the side effect of feeling sleepy all the time. Has anyone found a way to counteract this?

[Redrojomum]

I am in the same boat. The Ropinirole was fantastic for treating my RLS but then I was drowsy most of the time. I'm also having these other side effects (some rare) - unexplainable sudden weight gain, waking up with headache, pain in my legs and feeling generally stiff all over (despite always having been very flexible and supple), stuffy nose (no cold or flu or anything like that). So, my doctor and I decided I should come off the Ropinirole and try something else. I have to cut down over a week and then spend a week without any meds to see if all those symptoms disappear so we can be sure that its the Ropinirole causing the problems or if there's something else causing it. After that, I can start on a different medication.

Last night would have been the 3rd night without medication. The 1st and 2nd nights were not bad at all. I only experienced the very slight beginnings of RLS but subsequently slept really well and felt great in the morning. However, last night I crumbled when the RLS hit me with a vengeance! It even got my arms going too, something which used to happen only occasionally. I felt so frustrated and upset and eventually gave in and took the meds. It's scary how RLS has such a psychological effect as well as the obvious physical issues.

[Hidden in reply to Redrojomum]

Your doctor appears to have seriously misadvised you. You cannot reduce and stop ropinirole over a week!

Depending on what dose you were taking, it can take months to wean off any dopamine agonist such as ropinriole.

What you will now be experiencing is the severe withdrawal effects that will be caused by reducing it too fast. This could have been avoided if you had been given good advice.

Normally, it's advisable to reduce ropinirole in steps of no more than 0.25mg at a time in no les than every 2 weeks.

[Redrojomum in reply to Hidden]

Wow! I didn't realise the weaning had to be done over such a long period. At first the doctor told me to stop outrught and didn't even mention tapering at all. It was me who said I'd read the package insert on the medication where I read that it should be gradually decreased. The doctor called me back later and said she'd gone online to check the manufacturer's instructions and advised me to decrease over one week as I described earlier. I'm now thinking that she probably didn't even do that. No wonder I had such an awful night!

Today I spoke to another doctor and she said that instead of stopping I should stay on the Ropinirole while we wait for the results of an iron test. If my iron is low she'd like to get me on supplements and see if that doesn't help my RLS. Otherwise we'll change to a different medication (maybe Pramipexole). Any thoughts on this course of action?

[Joolsg in reply to Redrojomum]

Pramipexole is in the same category of drugs with the same side effects.

The stuffy nose I can remember! I used sea spray Sterimar & it helped. Ropinirole & pramipexole only usually cause weight gain if you start eating more because of Impulse Control Disorder. It can also cause compulsive spending/drinking/gambling in people who have never exhibited that behaviour.

If it was working for your RLS, are you able to tolerate the side effects?

The other drugs that work for RLS are Gabapentin & pregabalin but they definitely cause weight gain in many people ( it’s listed as a side effect) or opioids like oxycontin or , if you can persuade your GP, Buprenorphine or Temgesic. They can cause constipation.

All drugs for RLS cause side effects so you may be better sticking with Ropinirole ( but don’t increase the dose) unless you really find the side effects intolerable.

[Joolsg in reply to Redrojomum]

One week is way too fast and very dangerous. All experts advise 3 month’s minimum to avoid traumatic withdrawal. Believe me it can be hellish- it can lead to severe lack of sleep & an increase in severity & intensity of the symptoms. GPs have no knowledge or experience of dopamine agonist withdrawal ( there’s a syndrome called DAWS which is very real). It’s worse than heroin or crack cocaine withdrawal according to US experts.

Many of us have been through it & I remember sobbing in my doctor’s room begging for help after 3 days without any sleep and constant twitching everywhere while she looked bemused. Clearly didn’t believe me & suggested I drink warm milk as ‘we all get aches & pains as we get older’.

I suspect you may encounter similar problems with your doctor.

[Hidden in reply to Redrojomum]

It's great that the Dr decided to do iron tests. Iron deficiency is a causative factor in RLS.

Just in case this Dr isn't that familiar with managing RLS, the key test is for ferritin. If the Dr simply says your ferritin is "OK" or "normal", then ask for the actual result. If it's less than 75ug/L then you may benefit from starting an oral iron supplement.

Here's a link to some info about iron therapy for RLS.

sciencedirect.com/science/a...

Ropinirole is a dopamine agonist (DA) and hopefully whoever prescribed it warned you of the risks of taking such a drug. The main ones are augmentation and Impulse Control Disorder, (ICD), which Jools mentions.

I would suggest strongly that you do not switch to pramipexole which is another DA with yet higher risk of augmentation.

If you find the side effects of ropinirole intolerable, then I'd ask your Dr about the alternatives Jools outlines, not another DA.

In addition, if you're taking any medication for other reasons these may be making your RLS worse.

You may find this link useful

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

[Joolsg in reply to Redrojomum]

I agree with Manerva. That’s negligent & dangerous advice. Ropinirole should be reduced very slowly over a minimum of 3 months. Withdrawal is horrendous & usually requires heavy opioid pain killers to get through it safely.

[Tharg]

Hi, SueRegret that my experience with ropinirole will not help you. Started taking it when first suffering from RLS, some seven years ago. Worked fine until now. Starting to lose its efficacy. The withdrawal-like symptoms of RLS sometimes hit me about an hour after taking the stuff. Do not have the sleepiness which you are experiencing. Will have to give up the stuff soon but v difficult right now. Have found the only thing I can do to make the damn things work is to take 'em by surprise by changing the dosage and varying the time of taking. Having to take hot bath nearly every night. Either that or walk the night away on treadmill.

[Joolsg in reply to Tharg]

Sounds like augmentation.

[Tharg in reply to Joolsg]

Yup. Reckon you're right, Jools. Need to talk to GP about it. Will probably involve going through the withdrawal symptoms of reducing dosage until I can switch to something else. Very difficult for me right now. Having to do the carer thing for Mrs T who is recovering from BIG emergency stomach operation. Cannot afford to take risk of "losing it". Thanks for your message.

[Joolsg in reply to Tharg]

It’s a tough time for you. When I reduced from 4mg to 2.5mg I actually enjoyed a period of about a year when it helped settle the increased severity of RLS. It then came back with a vengeance.

You need to make sure you set aside a 3 month period to reduce slowly by 0.25mg every 14-18 days. You’ll get no sleep or rest for the 10-14 days after the last dose ( I only know 2 people on this site who didn’t have a traumatic withdrawal).

You will need to clear your diary for that 2 week period & ideally have someone who can stay up all night with you while you’re going through it.

Also discuss replacement meds with GP & you can start them as you begin the withdrawal.

Pregabalin is now first choice amongst experts & if it doesn’t help- an opioid like oxycontin or Buprenorphine or Temgesic.

[Tharg in reply to Joolsg]

Thanks for the detail, Jools. It is as bad as I thought. Particularly since when I get withdrawal symptoms I REALLY get them badly. Will think on it.

[Jules1953 in reply to Tharg]

I suffered terribly with augmentation due to being on Sifrol (Pramipexole) for approx 10years, it took me 2 years to slowly wean off the Sifrol medication. And unknowingly, I was on a very high dosage.To help me during this withdrawal period I used Endone (oxycodone) 5mg at night, during the last 3 months.

You can introduce other RLS treatment medications during this weaning process but make sure it is not another dopamine agonist type.

I introduced Gabapentin for a period of time.

Three months ago I heard about Temgesic sublingual 200mcg tablets, this is an opioid medication which is placed under the tongue and held there to dissolve, takes about 10mins. Temgesic is micro dosages of Buprenorphine.

I use 2 tablets each night.

I have now completely weaned off Sifrol and Gabapentin medications and only use the Temgesic sublingual 200mcg tablets to control my restless legs. King regards Julie McGowan from Western Australia