Newly diagnosed - indecision about treatment


#1

Hi

I'm recently diagnosed and have started on rasagiline. I don't think it is having much effect and was thinking of moving to the next advised medication Ropinirole. My symptoms are still relatively mild but my tremor inn the right arm is more noticeable to me - I don't think others notice particularly (except my OH). I also find walking quite awkward. However one of the main things I'm hoping it will help with is the overwhelming fatigue I feel by the end of the day. 

So my question is (and I realise everyone has different experiences) ... might the Ropinirole help with fatigue? Presumably if it helps the other symptoms subside I might not be constantly having to work so hard just to move.

As a bit of background, I'm mid-forties and have a small child (which may also contribute to the fatigue)

Thanks for any thoughts or experiences you can share on moving to Ropinirole.


#2

Hi SkyeBlue,

I am also recently diagnosed, and as yet am not on any meds, as I had an   adverse reaction to the Madopar they tried me on and see the Neurologist again in September to se where I go from here,like you I find the fatigue overwhelming the tremors come and go some days are really severe and other day hardly noticeable.

I can't answer your question but there are a lot of lovely people on here who I am sure will, 

I just wanted to say hello and welcome

C x


#3

It's like trying to wade through bitumen.

Please be careful with Ropinerole, it is a dopamine agonist.  It improved my mobility a great deal, but the downside were the side effects.  Ruined relationships, obsessiveness, insomnia, the list goes on. I only realised how awful I had been once I stopped taking it.

The first drug I took after being diagnosed 18 years ago was Sinemet.  I keep noticing that there seems to be a reluctance nowadays to prescribe it early on.  However, for me, it has proved invaluable.  I remember about half an hour after taking my first Sinemet tablet, I was signing a cheque and noticed my signature was larger than usual.  I cheered up immediately.

Good luck.


#4

Hi Martini,

Your post was music to my ears as Sinemet is what the neurologist is trying me on next, but is introducing it slowly, I can't start it until 4 weeks after my last Madopar which I didn't tolerate very well it apparently it stays in the system a long time, I should start the Sinemet end of August. I look forward to being able to sign my name again does it also relieve the tremors.

C x


#5

hi Clemmo

Thanks for the welcome! There's a lot to learn and get your head around early on isn't there. My only free time to research is evenings when I'm often too tired. Still, I'm trying to stay positive. Just need to work out what to do for the best with meds. 


Good luck with the next meds you try.

SB


#6

Hi Martini


Thanks for the warning about side effects. Drs have mentioned them which  I think is why I'm a bit concerned about the next stage. After ropinirole, dr has suggested ldopa. 

I might have a look at info on sinemet to see if worth pushing for.

Good to hear you got such good results with it and so quickly.

SB

 


#7

Hi skyeblue, 

I'm 18mths into doing. I started Ropinerol XL in November. 2mg and now upto 8mg. I've tolerated it well. I know about the down sides (as does my OH), we keep our eyes peeled for anything different . It does help with fatigue and gives me a 'normal' feeling. I have stiffness in my right hand and have to concentrate on walking. But I'm active with 3 teens. Like you, family life is tiring. 

It takes a while to get meds right and lifestyle to suit you and your family going forward. 

Good luck. 


#8

Hi DivineR


Thanks for the response. Really helpful to hear you are on ropinerol. I had a difficult day yesterday as it followed a busy day out, several bad night's sleep and I had a lot on at work. I think I'm ready to try ropinerole ad like you will keep an eye out for side effects.


I'd be interested to hear how you decide on what dose. Is it just trial and error? Do you discuss with Drs and OH or just go by how you feel?


Thanks

SB

 


#9

Hi SkyeBlue, 

Ropinerol is a Dopamine agonist and is usually given to early stage PDs. You will probably start on 2mgs and work up to a dosage that suits. This is over a period of weeks ie I went from 2-4mgs in 2or 3 weeks then 6-8 few months later. 

Everyone is different so don't worry if you don't get prescribed that way. You will feel nausea for the first few days. 

I'm still working part-time and active but you do have to look after yourself. Diet and exercise play a part in keeping you well.

There are some fb groups that may be of interest to you also. They can be quite supportive. Find a balance and try not to look too far ahead. Live in the moment. 

Others on here may have better advice. Take care. 


#10

Hi SkyeBlue, welcome to the Forum. I took Ropinirole for a while.....gradually went up from 2mg.-10mg. Unfortunately, although it helped symptoms a little, it also caused my ankles to swell, affected my eyesight and made me feel a bit spaced out at times. Plus I compulsively bought things on eBay!! This drug seems to affect people in different ways......some people do find it beneficial though. The Levodopa medication is not usually given to youngster like yourself, as it tends to only be effective for 5 - 10 years, before other drugs are added to extend it's effect. I'm 68 and have been on Madopar (Levodopa+Benserazide) for just over a year and find it the best drug so far for me. There's always plenty of help and advice on here, so keep reading!

Twinks.


#11

Hi DivineR

I've had an easier day today and am in two minds again re moving to Ropinerol. I guess it's always going to be a balancing act. I'm discussing with GP again next week. Perhaps it's worth trying something more and as I'm likely to start on a low dose just see how I get on.

I told my gym trainer and we're going to work on a new workout plan. I also do yoga. I'm frustrated I can't do what I used to but I'm determined to do what I can. I think I need to be better at stopping before I get too exhausted. I'm staying reasonably positive though. As you say, live in the moment, after all who knows what the future holds for any of us.

Thanks for sharing your experience on the meds though. It is so helpful to hear from others in a similar position.

SB

 


#12

Hi Twinks

I love the kitten picture :o)

Thank you for sharing your experience of Ropinerol. I think all I can do is try it and see what happens. The Parkinson's UK website is a goldmine of info and the forum is illuminating. I'll keep reading for sure! I'm also gathering confidence to reach out to a local young onset group. 

Really grateful to everyone who has responded with welcomes and their experiences

SB