Ropinirole

[Sewsweet]

Hi I have just been prescribed ropinirole ,before I take this I would be grateful for your thoughts.

[Joolsg]

Did a GP or neurologist prescribe it? Did they order any blood tests to check your serum ferritin? Are you taking any meds that cause RLS like anti depressants, anti histamines, cough & cold meds?

I was prescribed Ropinirole in 1997 when I was clearly anaemic ( pregnancy) and no bloods were ordered and no one knew that serum ferritin below 100 can be a cause of RLS.

It was wonderful at first so I don’t want to deny you that relief BUT 15 years on Ropinirole permanently damaged my dopamine receptors and I now have very severe refractory RLS which is largely controlled by Pregabalin and OxyContin but could probably have been prevented in the first place by raising my ferritin levels.

Dopamine agonists are no longer first choice treatment among top experts because of the risk of Impulse Control Disorder and Augmentation. If these haven’t been fully discussed with you by your Doctors, that’s not good at all.

My MS neurologist refuses to prescribe dopamine agonists- she starts new patients on pregabalin.

So, to conclude, I personally wouldn’t touch dopamine agonists as there are better, safer medications available and it would worry me if your doctors haven’t run blood tests and discussed ICD and augmentation in detail with you.

If you read all the latest posts you’ll see the problems Ropinirole can cause and how most doctors and neurologists haven’t got a clue.

Read Manerva’s responses - he includes all the links you need to learn about dopamine agonists, augmentation and the recommendations by NICE.

[WideBody in reply to Joolsg]

This! Joolsg and manerva are much more eloquent than I.

DA drugs are horrific and can ruin your entire life and relationships. Do you have a significant other? Warn them about behavior changes.

Did your doctor do a blood test? I also was clearly anemic. I am a 50+ year old male.

[Gibbliturtlbitz]

It seemed like a magic pill when I started taking it. And then I noticed that if I missed (or even just took it too late) that night time dose my RLS was worse than ever before (this is called augmentation). Or I would wake up to go to the bathroom and symptoms would pop back up as I was trying to go back to sleep (I believe this is called rebound). And then it stopped working as well and I needed to take more of it (tolerance). If your RLS is severe and interfering with sleep I do recommend trying it. However, if it is more moderate I would look at nutritional deficiencies first. Have your doctor refer you for a full panel. Low iron, B12, very low or very high sodium, and magnesium deficiency can all contribute to RLS symptoms. As can too little, or too intensive, exercise. I hope you figure it out and that your doctor is knowledgeable and compassionate enough to guide you through the process rather than throwing medicine at you. <3

[Hidden in reply to Gibbliturtlbitz]

Hi, just for information.

What you describe if you forget to take your tablet or take it late is not augmentation, it's a wthdrawal effect.

There is no comparison to augmentation, this is significantly worse and occurs even if you DO take yoyr tablet. All over, any time of day, within seconds.

[Hidden]

Hi, I guess since you last wrote your doctor has said you have RLS and has advised you to take ropinirole.

I wonder what else the doctor said to you.

My personal advice is don't take this drug until you have found out more about it, more about alternatives and more about other things that can be done to treat RLS.

I'm not saying ultimately whether you should take it or not, it's your choice. but I think you need to make that choice based on complete information. If you decide it's the best option and you don't need to do anything else that's OK.

Based on you calling this drug ropinirole, I am guessing you live in the UK. Sorry of this is wrong, I hope not, because what I'm about to write won't be as relevant.

The UK government has a agency called the National Institute for Health and Care Excellence. (NICE). One of the functions of NICE is to collect evidence about the best way for doctors to manage health conditions and then publish guidelines for doctors based oin that evidence. If doctors follow these guidelines then they know that what they're doing is on the right lines. If they don't follow them I believe this reflects badly on them becasue they cannot claim that what they're doing is esed on good evidence.

NICE published some guidelines on the management of RLS in 2016, what follows is based on these guidelines which I will refer to as NICE.

Firstly, it would have been helpful if your doctor had discussed any "underlying"causes with you. Particularly iron deficiency and any otber drugs you might be taking that may be exacerbating symptoms.

If your doctor did not do this, then they haven't followed NICE

As regards iron deficiency, although NICE mentions only anaemia, it is well documented that low levels of iron in the brain are a contributing cause of RLS. This can occur even if there is no anaemia.

If your doctor did not carry out a blood test for "ferritin" he/she has not followed NICE. What NICE doesn't say and what your Dr may not know is that for somebody with RLS, in order to have the same level of brain iron as somebody who doesn't have RLS, the ferritin level needs to be about 200ug/L

Ferritin levels can be raised by iron therapy, this is a treatment. This is not necessarily instead of drugs, it can be as well. If your ferritin is under 75ug/L ferritin can be raised by taking an oral iron supplement.

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

sciencedirect.com/science/a...

If you are taking any other drugs which may affect your RLS, your Dr should have discussed these with you. If none OK. If you are on any of these drugs and he/she hasn't discussed them, then they haven't followed NICE.

It may be useful for you to find out what drugs can make RLS worse so that you can avoid them in future.

Not mentioned in NICE are other things that can make your RLS worse and this is largely a matter of what you eat ir drink.

Your doctor has prescribed ropinirole, this is an example of one of the two classes of drugs recommended for RLS by NICE. Ropinirole is a "dopamine agonist". (DA). So your doctor has followed NICE in this.

However according to the Law of Informed consent your Dr should have told you of any alternatives. In this case NICE identifies "alpha 2 delta ligands" (A2D) as alternatives. If your Dr didn't mention these then you weren't offered any option, which you should have been.

Your Dr should have warned you about the risk of possible complications caused by a DA (but not an A2D). These complications are augmentation, loss of efficacy and Impulse Control Disorder. If they didn't, then they haven't followed NICE.

There are two classes of drugs used for RLS, DAs are one, A2Ds are the others.

It would be useful for you to find out about the relatives benefits and risks of these two.

There are differences between tihe two and some common things. They both produce side effects, they both cause dependency, they both have complications. Neither of them are perfect.

The biggest difference between them is that DAs cause augmentation and Impulse Control Disorders and A2Ds don't.

If you read quite a few posts in this forum, even over the last week, you will read about both people who are suffering augmentation due to a DA and people who are suffering an Impulse Control Disorder.

Ropinirole is a DA. It can be effective for RLS (at first) , so can an A2D. DAs are possibly more effective and the effect is more immediate. A2Ds don't cause augmentation or Impulse Control Disorder.

You will see different opinions about ropinrole and the other DAs. There are those that think they're wonderful, (I used to be one of them), but they haven't suffered augmentation ever. There are those that think they're evil, (I'm now one of them), and that's because they've suffered augmentation.

I suggest you find out more and if you decide to go ahead with the ropinirole, you may find it really good. For a while. That while may be years or it may only be months. Know about augmentation and Impulse Control Disorder, so you can recognise it if and when it happens. Know what to do.

If augmentation or Impulse Disorder does happen, you'll have to stop the DA and that is very hard to do.

Here's a link to the NICE guidelines : I strongly suggest you read these.

cks.nice.org.uk/restless-le...

[Pam34]

My advice, don’t take it. Read everything you can on this forum about dopamine drugs and augmentation.

There are better things to try. I took ropinirole and suffered because of a GP who was too arrogant to admit he knew little about RLS, and dismissed any information I offered as conjecture. Stopping ropinirole was one of the hardest things I have ever done.

Pam

[Zadoc]

I have been taking this for over 7 years now and I just couldn’t survive without it, I was taking 2 at night now I take three. I get restless kegs during the day and in the early evening but it is not until I go to bed that they become unbearable so..I take the Ropinerole an hour before I am going to bed. The downside for me is that if I don’t go to bed I begin to feel quite nauseated and very drowsy, I can’t take alcohol in any form( that includes in food) as a few moments after taking the Ropinerole I am sick! There you are then, it is not magic, sometimes it only dulls it, sometimes it stops it, but it is my lifeline. I hope it can help you. PS I don’t think I have seen this anywhere official but to deflect from the nerve impulses I move my feet, up and down, round in a circle and bend my legs up and down and sometimes it just takes the edge off the awful pull on your legs

[troopdad]

Hi Sweets,gee i am sorry about your RLS..Straight out of hell they are.. I am 86 years old and have been bothered since 4 or 5..They come and go.My Dr. has me to take one 300mg each day about 3pm.Ropinrole is a blocker not a catch up med. Take it hours before needing same..To my knowledge no ill effects.. I was on Gabbapentin 3x a day and it caused a personality change. My wife and kids thot I had gone nuts..After stopping the meaness went away and the Rpinorle works for years..Remember I am not a Physician sso ask the Neuro..

Some times I feel anxious and take aa Xanax or two Tylenol.Sex helps exercise helps meditation and prayer help..See you girl..

Jim Rags dad