Diagnosed last Thursday


#1

Ho hum :-(

So the next step is meds. Have docs appointment on Friday afternoon. So the big question is Agonist or Levodopa? Ropinirole or Sinemet?

Any advice would be gratefully received, I'm tending towards the Ropinirole at the moment.

Need to reduce the shakes and fatigue.

Should I tell them at work or will meds hide symptoms?

I work on the support desk for a software company, mouse hand shakes a bit, and shows up quite a lot when I'm using a projector during training sessions.

Robin


#2

Hi Robin, 

How are you feeling today? I'm sure it's been quite a shock.  

Your consultant should be able to discuss medication in more depth with you, Parkinson's is so unique to the individual and it affects everyone differently. It's not uncommon for people to slowly start medication and test how they are feeling. 

We do have some advice on approaching your employer about Parkinson's and talking about it in general with people you're close to here https://www.parkinsons.org.uk/information-and-support/talking-people-about-parkinsons

Hope this helps, let us know how your appointment goes. 

Kat 


#3

Hi Kat, thanks for post.

Complete disaster, had appointment with doc and I'm sure we/I decided on Ropinirole, however when I picked up the prescription it was for Sinemet.

I then had to phone the doctors frantically asking for another prescription for Robinirole. Thankfully they faxed the prescription over to my local chemist in Sainsbury's where I picked them up on Friday night. Took the first one Saturday morning and about an hour or so later was so tired and weak and dizzy I ended up sleeping all day. I put it down to the dosage of 2mg once a day, whereas the leaflet I received from the Neurologist was to start on .25 mg once a day for a week and then gradually increase.

Fearing the dosage was too high and 111 were no help, I took no more on Sunday,

I've now spoken to another doctor at the practice who agreed to prescribe .25 mg for first week, (once a day). I need to start this over the weekend to give me the time to cope with any side effects as now I'm worried that I'll get to work on a Monday only to fall asleep at my desk, and as at the moment I have not opted to let them know of my condition it could be a bit of a problem.

So now I'm worrying the I chose the wrong drug and should have started on the Sinemet. Now I'm going to wait until this weekend to try the lower dose of Robinirole.

Robin


#4

Please look back at posts about Ropinirole on the forum.

Are your symptoms   so bad that you need medication now?

20 years ago, and, knowing no better, OH was prescribed Ropinirole straight away. 18 months later OH was on 24mg/day, the highest dose when in reality they did not need this at that time.

Ropinirole may reduce your symptoms in the short term but please look up the long term effects and actually how diffiicult it may be getting off this drug in the future. Question why you have been prescribed this drug and be armed with all the information that you can gather about it. There's plenty on this forum alone.


#5

Hi Robin, 

Sorry to hear you've not had a great experience, it must be pretty stressful. Benji has offered some good advice here. 

If you would like to talk to a Parkinson's nurse, you can do so by calling our helpline on 0808 800 0303. They specialise in medication and may be able to offer advice whilst you're waiting for more discussions with your doctors. You can get a call back within 24 hours usually. 

Wishing you a much better week than the last!

Kat


#6

Thanks Benji / Kat

Now I have 3 packs of 0.25 mg Ropinirole with instructions to take ONCE DAILY increasing to THREE times a day as instructed... What instructions?

The original prescription was for 2mg ONE to be taken for one week then increase to two a day.

Oh gloom :-( and the doctor's aren't that much help, spose I'll have to make up my own mind. Unable to get appointment with my doc until 29th Dec or later. Only got 36 .25mg at 3 per day gives 12 days worth... what do I do then? What if I run out? Cold Turkey? Well spose it is the season for it!!!!!

Robin


#7

Phoned the Helpline: 0808 800 0303 on this site and spoke to  very helpful and sympathetic advisor who said she'd arrange for a nurse to give me a callback.

This happened within 15 minutes.

Spoke to nurse re dosage who explained different dosages and plan to follow. Needless to say neither neurologist or doctor had explained it to me well enough.

Wasn't told that the 2 mg was slow release and needs to be taken once a day. So going to try increasing from .25mg 3 times a day up until 1.75 then hit the 2mg once a day to start with. Could do with idiot's guide to Ropinirole somewhere!

Robin


#8

And as Columbo always used to say... just one more thing...

Is Ropinirole accumulative? i.e. if I find the dose that reduced my symptoms, does it work straight away after I take it and then drop off towards the next dose, or does it top up each time?

In which case, what happens during the night when I don't take one? If I take my last of the day at dinner time (evening meal) at 6:30 pm what happens to my symptoms during the night until my first next morning at 7:30?

Just like to get it in my head?

Robin


#9

Anyone?


#10

Hi RAtilio,

When you get a chance it would be good to go back to your doctor for advice about this. You can also call our Helpline again on 0808 800 0303. We have reduced hours over the holidays but you can find the details at: https://www.parkinsons.org.uk/news/living-parkinsons-festive-season. If you are worried about your dosage while we are closed, do call NHS 111 for advice. Hope this helps.

Best wishes,

Edwina

Moderation Team


#11

Hi Edwina,

Thanks for advice.

Robin