Away with the fairies


#1

Hi I'm fairly new to the forum. I was diagnosed in June 13 and after fainting with shock  in the doctors surgery I am gradually coming to terms with it. I am active and have been doing well on 3 sinemet a day and am about to start taking 1 pramipoxole a day has anyone had any experience of this drug. Also be interested to hear what medication were you started  offf on as I understand sinemet does stop working eventually was wondering whether i would have been better to start off on one of the other medications available. Look forward to hearing from anyone am new to this and feel rather shy and awkward!! Thank you 


#2
Everyone needs to be given drugs to assist with their specific current symptoms. It's not that drugs stop working per se but that your PD has moved on and a drug is less effective regardless of when you first took it. It is true the more you take the quicker it seems to wear off. Sinemet and Pramipexole all carry the risk of doing things you can normally stop youself doing. Some people think it changes your personality, I think it's more that the feel good factor of having Dopamine levels up again make your inhibitions drift away. Consider what you're like when tipsy or worse, would you buy or do things that are normally out of character or you regret. Have a read of the other replies, talk to your PD specialist and nurse but above all, keep an eye on feedback from family and friends. Best wishes on finding the right combo for you and be as active as you're up to each day

#3

hi awtf,     I started on pramipexole at the start and after a few years i developed impulsive behaviour on them ,then i switched to sinemet i was great on them for a very good number of yrs my parkinsons was very aggressive tho some people go for yrs just on very little pd meds & have a life with very little changes .JUST REMEMBER TO WATCH OUT FOR IMPULSIVE BUYING,GAMBLING,SEX.TELL YOUR PARTNER & FAMILY MEMBERS TO KEEP A EYE OPEN JUST TO BE SAFE  !  You can come on this forum & find good friends & good answers all the best gus


#4

hi awtf,     I started on pramipexole at the start and after a few years i developed impulsive behaviour on them ,then i switched to sinemet i was great on them for a very good number of yrs my parkinsons was very aggressive tho some people go for yrs just on very little pd meds & have a life with very little changes .JUST REMEMBER TO WATCH OUT FOR IMPULSIVE BUYING,GAMBLING,SEX.TELL YOUR PARTNER & FAMILY MEMBERS TO KEEP A EYE OPEN JUST TO BE SAFE  !  You can come on this forum & find good friends & good answers all the best gus


#5

hi awtf,     I started on pramipexole at the start and after a few years i developed impulsive behaviour on them ,then i switched to sinemet i was great on them for a very good number of yrs my parkinsons was very aggressive tho some people go for yrs just on very little pd meds & have a life with very little changes .JUST REMEMBER TO WATCH OUT FOR IMPULSIVE BUYING,GAMBLING,SEX.TELL YOUR PARTNER & FAMILY MEMBERS TO KEEP A EYE OPEN JUST TO BE SAFE  !  You can come on this forum & find good friends & good answers all the best gus


#6

Hi awtf, no need to be shy! And we're all awkward (no? Just me then).

What Gus tells you three times is true - Pramipexole can lead to compulsive behaviour. And you'll be the last one to realise it - so make sure your carer, o/h, best friends know about the possibilities and will be brave enough to tell you what's going on - in which case, get yourslef off to your GP pronto.

I've been on the max dose of Pramipexole for best part of three years, and a jolly useful drug it is. Received wisdom is that it's a good starter drug, and can delay the need for levodopa which was thought to be a Good Thing. Latest studies, however, show that there's not really any advantage and you might as well start on levodopa.

PWP are really very different clinically speaking, and drugs that suit one can be horrendous for another. You may be given the opportnity to try out different combinations t osee what suits you best. Or, like me, you'll find it's all very general, and one drug is much the same as another. Oh the joys.

Very best

Semele

 

 


#7

Hi awtf,

everything the guys said above is true, I started on pramipexole straight away June  although i have not suffered ICB there are some on this forum that have virtually been to hell and back with that drug.

so go careful and stay safe x

BB


#8

Hi I  started on Azilect when I was dx almost 6 years ago, then went onto Pramipexole 5 years ago.  I have recently had Madapor added.  I have had very few problems with any of these meds other than I hate having to take them.  Dread to think how I would be without them, so extremely thankful for them.


#9

Hi 

Usually a dopamine agonist (DA) is given as a first drug to delay the use of levodopa

DAs Mirapexin (Pramipexole) Requip etc

Levodopa  Sinemet Madopar

All PD drugs can have behavioural side effects but there is definite link with the DAs and more extreme behaviours

With hindsight my behaviour was affected from the start of taking Mirapexin but it is very subtle. How it develops is very individual and its worth reading up on how dopamine works. Basically it effects things that give u a kick and also it increases risk taking behaviour and so can escalate any problem. What you perceive to be a problem may not be same as me so you need to monitor and be monitored individually.

On the plus side DAs can be good for mood and as a muscle relaxant but can be a devil to withdraw from.

Ask your consultant why he want a DA introduced after starting on sinemet. (sinemet taken correctly is vastly more effective than any other pd drug and on a sensible drug regime with proper titration dyskinesia can be avoided.

All my opinion of course

L

 


#10

Away with the fairies

I noticed you have been a member of the forum since June 2013.

Out of interest in making the forum more welcoming;  what held you back from posting for so long and what inspired you to make your first post?

 


#11

Thank you for all your helpful replies. I'm going to delay taking this new med until after Easter as I'm off on holiday and like a glass of wine or 2. Perhaps that's another question I should have asked can u drink alcohol with it. In answer to Leythers question I'm not sure why it took me so long to start posting maybe I was observing from afar believing this was not really happening to me. I think I've finally 'come out' so to speak. Look forward to getting to know everyone. Thank you 


#12

Hiya

I'm Tracey.

I was diagnosed at 26 and Sinemet was the medication i was started on, was probably on that for about 3 years until they started wearing off really quickly. I was then put on Sinemet Plus but they made me very jumpy, so those were stopped. I now take Stalevo, as well as Madapar dispersible in the mornings to kick start me off, and I also take Ropinerole now too.

Hope you find your happy medium.

X


#13

You are a sweetheart what a lovely way to meet you. Even though I know that PD affects all ages it was still a shock to me to see you were dx so young, I do hope the PD has a slow progression on you good luck sweetheart . BB


#14

Betty, 

I feel my PD is slowly getting worse, i take my meds every 2 hours, its a major pain in the behind.

Thanks 

X


#15

In all the time ive had PD i havent seen a PD nurse, only my consultant...or am I being a bit blonde and they're actually the same person???!!!

Haven't even been told what stage i'm at :( I just take each day as it comes....infact, today has been the first day in about a week and a bit where i haven't had 'down time' whoop whoop, although at this precise moment in time, ( nearly 23.15)  i can feel myself begin to fidget, my hands are slowing down slightly, could be in for a bit of an uncomfortable night..Boo Hoo


#16

Blondie I am going to Private Message you xx


#17

 

              Hello Tracy, I have a insatiable need to know things which has not diminished despite parky or even because of it,it has got me more than a few times,, into very deep  doo doo, I find the more I know about BLACKHEART  the more able I feel  I can deal with it if you get my drift, your posts are well put together  and easy to read, remember 4 warned is 4 armed.???????? so research as much as you can.

            sorry im fading so BFN   MY FRIEND,,, FED


#18

Hello

I've been through many different drugs over the last 16 years and they have always worked for quite a while and have been changed as time goes on. 

"Live for the day" is the motto of the month.  Yesterday has gone and there's no point in worrying about tomorrow as there's lots of things to do before then.

 

All the best

Casie


#19

I forgot to tell you, I tell lots of lies!!!

(Only Joking)


#20

confused

         I have been visiting the same dentiist since I 6YRS old, thats 22 yrs ago ( I WISH ) ITS 59 yrs,and it was in my late teens when I discovered he was gay, well that made no difference to TEENFED, but as it was comparitively rare to be THE ONLY GAY IN OUR VILLAGE, especially a Dentist, he aquired the nickname

 of THE TOOTH FAIRY, sad but unfortunately true.cool

                                                                    FED   EXLIKE