Intro from a new member - and questions on how to use Ropinirole

About me Introductions and personal stories
1

I was first aware of “something wrong” when aged 57 I noticed a tremor in my left ankle in Feb '17. 3 mo later GP referred me to neurologist who saw me in Oct. Halfway through 15 min appointment I said I feared I might have Parkinsons, which got the reply “I rather think you do - I knew before you sat down”. Direct, but I’d rather that than wasting time. He sent me for blood tests and MRI to exclude other things.

Seen again in Feb this year, the MRI apparently shows lots of dots on my brain, which he said nobody knows what these are, other than interruptions in normal blood flow - sounds alarming. However he said my case is mild and he can control it with tablets for 25 years - sounds encouraging. Anyone else know about these dots?

He sent me back to the GP to start on Ropinirole which I started in March. Three weeks each so far on 2mg, then 4mg, and now 6mg modified release nightly. Had nausea to start with though that seems better now, though taking it after a glass of wine that evening is just horrible next day - headache, nausea, congested lower abdominal feeling.

I feel brighter and less brain fuddled - maybe psychological, or spring time, but I’m less tired and my affected foot drags on the floor less. However tremor is not better, and does seem to be spreading from left leg to left and right hands.

Is night time the right time? GP had no suggestion, pharmacist said not morning because it can make you drowsy. But forum users seem to be taking it in the morning.

I’m in the 3rd week of 6mg a night. How do I know what is the right amount to stop at? What am I looking for? GP, normally excellent, doesn’t seem to know and asked me what neurologist suggested. Meanwhile neuro has said he doesn’t need to see me again. I seem to be in a care gap - too trivial for a consultant, too specialist for a GP.

I know from reading the forum today there are Parkinson’s nurses here at PUK, but is that the only way to access such a service? Maybe I should just ask my GP, as I’d want such care integrated into my medical records. Anyway I will call the helpline tomorrow to see when I can arrange a call back.

I have a busy, stressy, highly mentally demanding job as a department manager and subject expert - most of which I love and am extremely keen not to give up. I have told my CEO who has made all the supportive noises I’d hoped for, but I have no idea whether I can keep up the pace - last autumn after the diagnosis was pretty tough.

I know this is a journey and all the meds can do is slow the decline. Also that depression and dementia are more common in PD sufferers. I guess I just need to take it a day at a time - though some of the days seem long…

So that’s a sample of me. What can we do for each other?

2

Hi Simonsse,
I take 12mgs Ropinerol XL. I take it in the morning after breakfast. Ropinerol can go to mx dose 24mg. So you are on a low dose at the moment. But it’s best to go slowly. Be careful of obsessive behaviour / one of the side effects.
Work on maintaining a good exercise and diet routine and keep the stress down if possible.
Check if there’s a nurse attached to the hospital or consultant. You tend to see them more than neurologist.Hope that helps.

3

simonsse

Please look up previous and extensive posts/discussions on the forum regarding Ropinirole. On being diagnosed OH was, with 18 months, on 24 mg. 20 years ago, we knew no better than to take medication as soon as one was diagnosed. In hindsight we would have chosen a very different route.

It took many attempts to come off Ropinirole for my OH, for many years.

Take care on this drug, is all that I can suggest.

Motilium can ease nausea symptoms.

4

Hi Simonsse

Your symptoms sound very similar to mine and my neurology consultant’s reaction was much the same. I really felt unsupported until I saw our local PD nurse. Here in Essex it’s possible to self-refer which is what I did. There’s a search facility somewhere on this website which lets you find your local nurse, I think.

Best of luck

Clare

5

I was diagnosed at the end of March and the neurologist put me on 2mg Ropinirole which was increased to 4mg on 22nd April. Saw my GP yesterday and he’s a bit clueless when it comes to PD bless him, I’m convinced he doesn’t think I’ve got it as, so far, I’m only mildly affected in my right arm. I was lucky not to suffer any nausea, just a little fatigue for the first couple of days of taking Ropinirole and when I increased the dose. Looking forward to seeing the nurse for the first time next week, got a list of questions as long as your arm!

6

Hi simonsse - I’ve had PD for eight years now - started on Ropinirole XL (slow release) Started on low dosage and gradually built it up to 18mg a day, guided by my Neuro and PD Nurse. The Neuro didn’t want me to go any higher than 18mg per day and started me on Sinimet to run alongside the Ropinirole XL last year (2017)

I have always been fine taking this drug, but I must tell you it doesn’t suit everyone, in fact some have a lot of problems with side effects, the main one being the compulsive behaviour, as in spending, change in sexual behaviour, so please be aware of these changes and get help.

I don’t wish to alarm you but it must be told about this particular drug, but you could always be one of the few who can tolerate taking it and be perfectly fine.

Sheila

7

Does anyone have any positive stories on this drug. I am on no medication currently but it has been suggested for me

8

Been taking it for a couple of months and it’s helped me, I’m only on 4mg but my pd nurse said if I’m comfortable at that dose just to stay with it. My right arm feels like it belongs to me again and tremors are almost zero.

9

Hi Gordo, I have had PD for eight years and was prescribed Ropinirole XL slow release in the first instance, this drug is not for everyone due to the side effects. I have and a few others have been fine on this medication, I now take 18mg of Ropinirole along with Sinimet, this suits me, but you must find out about the side effects this drug can cause before you decide to start taking it.

sheffy

10

Hi Gordo,
Im 52 and diagnosed 2 years. I started Ropinerol XL 18mths ago. 2mgs slowly worked up to 12mgs now. No side effects as such. Im about to add levadopa.
Obviously you have to be aware of the side effects of any Parkinsons meds. Everyone reacts differently too. Its Nerve-wracking but make your own decisions and take your time.

11

Daily Mail today.
New French research shows 50% of patients on Dopamine Agonists develop impulse control disorders. Number rises the higher the dose.
Lives wrecked. Families ruined. Finances destroyed.
No recourse to compensation.
No publicity from Parkinsons UK.
Take care.
Too late for me and my family.
GG

12

I Was diagnosed about 12 months ago, I’ve been taking 2mg of ropinerole. I also take 10mg selegenin. I feel like I’ve got my life back. It’s a shame it doesn’t suit everyone, but for me, I have nothing but praise for the medication.

13

Thank you all for the information, I have held off for now. I have no tremors, my biggest problem is pain caused by rigidity in neck, shoulder and elbows and a drop in my energy level.

14

Hi Gordo i am64 diagnosed four years ago taking 2mg cobenaldopa and 2mg repinex xl it seems to work well and I like the fact it is low level of meds my neuro has suggested taking 4mg of cobenaldopa to increase positive effects I am not so sure. Yoga three times per week workouts 3 times a week golf1/2 times per week keep me positive and strong major impact of PD is swallowing and occasional constipation plus some tiredness in the afternoon

15

I would appreciate if you could give me some more information on what your symptoms were and what it did to give you your life back.

I have no tremors but stiffness in the joints and an increased lack of energy in general

16

Hi Gordo
My problems were, fatigue, so much so that I dreaded the two days a week we look after our grandchildren, I was continually dizzy, to the point that looking left and right before crossing the road was troublesome, my right hand shook to such a degree that it was embarrassing to visit the dentist etc.
After taking the medication all of those symptoms became lesser, I visited my PD nurse a month ago, and by mutual consent, my dosage is staying the same,and i don’t have another appointment for 12 months.
If you’re worried about compulsive disorders, why not give your partner permission to track your movements on your phone, check daily your bank account, and also see your internet history. What is there to lose?
I really hope this answers your question.

17

Hi Gordo,
I have been diagnosed for 6 years like you have no tremor main symptoms are fatigue and stiffness and now so slow,but I have been helped immensely by madapor and selegeline I was also on rototogine patches for a short while but they did not agree with me at all,mainly compulsive behaviour,Madopar helped me practically immediately,hope this info is of some help Anne29

18

I’ve taken ropinòrole for 8 years and I get swollen ankles

19

Thanks for your feedback, please excuse my ignorance but I haven’t heard of madapor, I have only been offered ropinirole or rasagiline, what’s the difference?

20

Hi gordo ny symptoms were exposed by heat in Brunei and the stress of presenting and facilitating groups of head teachers symptoms were mainly talking gibberish and tremor now on 2 mg of ropinex xl and 2mg cobenaldopa I lead a pretty normal life swallowing is sometimes problematic