Hi Kyloe and welcome. I was dx 16 months ago and like you am on Requip XL 8mg also taking Sinemet Plus, Madopar and just this week started on Selegiline HCI 5mg. I have not had any bad side effects just the usual 'sicky' feeling some days. I have an excellent neuro and PD Nurse who always question me and my o/h regarding any changes in behaviour since my last appointment so I feel quite reassured to continue the regime.
I hope you enjoy posting on the forum. I have found it to be a great place to come to for advice from people who understand what PD is all about.
Hope to chat later, perhaps you might pop along to the social club cafe
I have no problem whatever with those who choose to take DAs taking them (re: side effects), my problem is with 'newbies' being urged to take them without possession of the facts.
30th January 2008 - New research
parkinson's disease patients do better without treatment
Journal of Neurology, Neurosurgery and Psychiatry [2008] Jan 25; [Epub ahead of print] (Asimakopoulos P, Caslake R, Harris CE, Gordon JC, Taylor KS, Counsell C.) Complete abstract
Parkinson's Disease drugs become progressively more counterproductive. L-dopa enables patients to form more dopamine, but it also reduces a person's ability to produce their own L-dopa. Dopamine agonists stimulate dopamine receptors, but in time cause dopamine receptors to become less progressively less sensitive. Consequently, it has been debated whether to adopt a "wait and watch" strategy or to initiate drug therapy soon after being diagnosed with Parkinson's Disease. This research assessed the outcome of the two options. Those patients that started drug treatment within the first year actually had higher symptom scores after two years than those patients that had remained completely untreated. Those that remained untreated also suffered no significant deterioration in their symptoms over the following two years. The researchers consequently suggest that treatment of Parkinson's Disease be delayed after diagnosis.
AZILECT CLAIMED TO SLOW PROGRESSION OF PARKINSON'S DISEASE
Azilect (rasagiline) is a MAO inhibitor that is sometimes used in the treatment of Parkinson's Disease. For more information go to Rasagiline. Teva Pharmaceutical Industries have announced results of the phase III ADAGIO trial concerning Azilect. Teva have claimed that Parkinson's disease patients who took Azilect (rasagiline) 1mg tablets once-daily upon entry into the trial, demonstrated a significant improvement compared to those who initiated the drug 9 months later, implying that it is better to begin the use of Azilect earlier. Consequently, it has been widely claimed that Azilect slows the progression of Parkinson's Disease. However, the claims are misleading and unsubstantiated. As the use of Azilect progressed, those patients that had begun Azilect earlier were no different than those that had started Azilect later. During weeks 48-72, the effect of earlier use of Azilect was described as being merely "non-inferior" to those that started Azilect later. For more information go to the Complete article. MAO inhibitors, such as Azilect do nothing to slow progression of Parkinson's Disease either, as all drugs end up having an opposite negative effect in the long term due to a biochemical mechanism called "feedback inhibition". "Feedback inhibition" is a mechanism via which the body counteracts the artificial effects of any drug.
http://viartis.net/parkinsons.disease/news.0808.htm
30th January 2008 - New research
parkinson's disease patients do better without treatment
Journal of Neurology, Neurosurgery and Psychiatry [2008] Jan 25; [Epub ahead of print] (Asimakopoulos P, Caslake R, Harris CE, Gordon JC, Taylor KS, Counsell C.) Complete abstract
Parkinson's Disease drugs become progressively more counterproductive. L-dopa enables patients to form more dopamine, but it also reduces a person's ability to produce their own L-dopa. Dopamine agonists stimulate dopamine receptors, but in time cause dopamine receptors to become less progressively less sensitive. Consequently, it has been debated whether to adopt a "wait and watch" strategy or to initiate drug therapy soon after being diagnosed with Parkinson's Disease. This research assessed the outcome of the two options. Those patients that started drug treatment within the first year actually had higher symptom scores after two years than those patients that had remained completely untreated. Those that remained untreated also suffered no significant deterioration in their symptoms over the following two years. The researchers consequently suggest that treatment of Parkinson's Disease be delayed after diagnosis.
AZILECT CLAIMED TO SLOW PROGRESSION OF PARKINSON'S DISEASE
Azilect (rasagiline) is a MAO inhibitor that is sometimes used in the treatment of Parkinson's Disease. For more information go to Rasagiline. Teva Pharmaceutical Industries have announced results of the phase III ADAGIO trial concerning Azilect. Teva have claimed that Parkinson's disease patients who took Azilect (rasagiline) 1mg tablets once-daily upon entry into the trial, demonstrated a significant improvement compared to those who initiated the drug 9 months later, implying that it is better to begin the use of Azilect earlier. Consequently, it has been widely claimed that Azilect slows the progression of Parkinson's Disease. However, the claims are misleading and unsubstantiated. As the use of Azilect progressed, those patients that had begun Azilect earlier were no different than those that had started Azilect later. During weeks 48-72, the effect of earlier use of Azilect was described as being merely "non-inferior" to those that started Azilect later. For more information go to the Complete article. MAO inhibitors, such as Azilect do nothing to slow progression of Parkinson's Disease either, as all drugs end up having an opposite negative effect in the long term due to a biochemical mechanism called "feedback inhibition". "Feedback inhibition" is a mechanism via which the body counteracts the artificial effects of any drug.
http://viartis.net/parkinsons.disease/news.0808.htm
I don’t believe anyone is being ‘urged’ to take DAs, krugen, as the initial idea of this thread was to keep a balanced view.
Although there is another thread which deals adequately with the downside of DAs, your contribution nevertheless gives a different slant and is interesting and valid. Armed with as much information as possible, people will be better able to make a decision on whether to try (or continue) with DAs or whether to look for alternatives.
All information is good; it is how we process it that matters, and I intend to read through your message a few more times to make sure I understand it all.
I am grateful for your contribution and I’m sure others are too.
Although there is another thread which deals adequately with the downside of DAs, your contribution nevertheless gives a different slant and is interesting and valid. Armed with as much information as possible, people will be better able to make a decision on whether to try (or continue) with DAs or whether to look for alternatives.
All information is good; it is how we process it that matters, and I intend to read through your message a few more times to make sure I understand it all.
I am grateful for your contribution and I’m sure others are too.
I was really referring to neurologists and 'pharma', my apologies if I didn't make myself clear.
My 2 separate neuros(one NHS, one private) were falling over themselves in their haste to start me on something, neither of them mentioning what would then happen over time
.....Quote ' if WE really hit the drugs hard we should keep you going (working) for the next 5 years '
My 2 separate neuros(one NHS, one private) were falling over themselves in their haste to start me on something, neither of them mentioning what would then happen over time
.....Quote ' if WE really hit the drugs hard we should keep you going (working) for the next 5 years '
Wow ! sorry Krugen but thats way over my head at the moment, i'll try reading and understanding it later if thats ok.To others thanks for the welcome, I tend to try and keep things simple, logical, and positive and take each day as it comes. Please dont expect long posts as typing with one finger is not easy and i find sitting for any length of time uncomfortable, so my posts will probaly be short but hopefully sweet
Speech recognition for pc would be a great help to post more and in that respect i am researching. My HTC mobile phone has it and its so much easiar to text or email, maybe i could use it to post here as well, i shall try later.
In the meantime the sun beckons me to return to the garden and a hen is clucking meaning another egg has arrived, the pleasure of picking a warm freshly laid egg out of the nest is without doubt most rewarding.
just a quick hello to say speech recognition is it working from my mobile phone wha hae
......sun, hens clucking, and a warm freshly laid egg.... sounds marvellous ! (envy, envy )
I started taking meds (mirapexin) when my symptoms became so problematic as to grossly interfere with my day (pain, poor mobility etc). It's your choice when you begin, if you choose to cope with symptoms for a while that should be respected by your neurologist. In my experience I supplemented low doses of meds with huge amounts of concentration to 'teach' my muscles to respond again as they used to. I needed both meds and my own effort to progress, but by doing this I beleive I have regained abilities while keeping the dose as low as possible to maintain quality of life.
Hi Jo72,
This sounds just right , and you have a measure of control in how you manage drugs and the supplementary things you do. Can you tell us more regarding the 'concentration' you used to help your muscles to respond as they did formerly ? Did you use visualisation techniques ?
The mind/ matter phenomenon is a very interesting path to go down , I'd like to learn more.
All the best.
This sounds just right , and you have a measure of control in how you manage drugs and the supplementary things you do. Can you tell us more regarding the 'concentration' you used to help your muscles to respond as they did formerly ? Did you use visualisation techniques ?
The mind/ matter phenomenon is a very interesting path to go down , I'd like to learn more.
All the best.
Lily, you said there is a thread that deals with DA side effects? Don't you mean "there was a thread" because the last 2 threads have been closed down by PUK because of verbal punch ups braking out.
I fully accept 3 out of 4 people are not impacted by serious side effects. Also i accept its your right to balance the debate by highlighting the positives of DA's.
Now i have said my piece i will leave this thread alone. I don't intent to start posting counter arguments highlighting the RISKS or DOWNSIDE of taking DA's. Nor do i intend entering into a verbal punch up
I sincerely hope lots of pwp post on this tread sharing their positive experiences of taking DA's.
Good luck for the future and best wishes
Blueeyes
[This post has been edited by the Moderators]
I fully accept 3 out of 4 people are not impacted by serious side effects. Also i accept its your right to balance the debate by highlighting the positives of DA's.
Now i have said my piece i will leave this thread alone. I don't intent to start posting counter arguments highlighting the RISKS or DOWNSIDE of taking DA's. Nor do i intend entering into a verbal punch up
I sincerely hope lots of pwp post on this tread sharing their positive experiences of taking DA's.
Good luck for the future and best wishes
Blueeyes
[This post has been edited by the Moderators]
Morning all and what a glorious one it is too, clear blue sky so once the sun has risen it looks like another sunny day ahead, might even get hot enough to sunbathe in a sheltered corner
Was hoping that some fresh input from someone new might inspire all sides in this debate to at least try and be more understanding and respectful of others views, and not to be so confrontational
I've been reading these forums for nigh on two years now and as a result of reading about some pwp's problems with side affects I delayed the start of my medication because of the sheer fear, assuming wrongly that all who took DA's would suffer. Thankfully I have a inspiring PD nurse who basically said no pain no gain and that i wouldn't find out until i tried, but i still went onto this medication with immense fear and anxiety mainly from what i had read here, and we all know what stress and anxiety does to our condition.
Fortunately my fears were, and so far, are unfounded, i still remain aware but not in the scary way that i was at first. From my personal perspective some people have gone way OTT in their efforts of making others aware to the detriment of someone newly diagnosed and looking for hope and reassurance, I was one such person.
From the wider perspective people are clearly fed up with the intolerance of some and have left the forum, new folk are not joining in great numbers maybe because of the animosity they see, and some folk who don't get their own way have thrown their dummy out of the pram and fled, none of which is helping you and me and the charity.
Negativity in all respects must be avoided with this illness, one can still get one's view across in a positive way without being personally critical in a vindictive way and respect another individuals view. Hope that does'nt sound too patronising, its just that there shouldn't be a "them" and "us" there should only be "us" the PWP !
Damn...now my mug of tea has gone cold and i'll need to make another, time to let the hens out, just spotted a female pheasant in the garden, maybe she's looking for the resident male ?
LOVE IS IN THE AIR
Was hoping that some fresh input from someone new might inspire all sides in this debate to at least try and be more understanding and respectful of others views, and not to be so confrontational
I've been reading these forums for nigh on two years now and as a result of reading about some pwp's problems with side affects I delayed the start of my medication because of the sheer fear, assuming wrongly that all who took DA's would suffer. Thankfully I have a inspiring PD nurse who basically said no pain no gain and that i wouldn't find out until i tried, but i still went onto this medication with immense fear and anxiety mainly from what i had read here, and we all know what stress and anxiety does to our condition.
Fortunately my fears were, and so far, are unfounded, i still remain aware but not in the scary way that i was at first. From my personal perspective some people have gone way OTT in their efforts of making others aware to the detriment of someone newly diagnosed and looking for hope and reassurance, I was one such person.
From the wider perspective people are clearly fed up with the intolerance of some and have left the forum, new folk are not joining in great numbers maybe because of the animosity they see, and some folk who don't get their own way have thrown their dummy out of the pram and fled, none of which is helping you and me and the charity.
Negativity in all respects must be avoided with this illness, one can still get one's view across in a positive way without being personally critical in a vindictive way and respect another individuals view. Hope that does'nt sound too patronising, its just that there shouldn't be a "them" and "us" there should only be "us" the PWP !
Damn...now my mug of tea has gone cold and i'll need to make another, time to let the hens out, just spotted a female pheasant in the garden, maybe she's looking for the resident male ?
LOVE IS IN THE AIR
Sadly Kyloe it would appear there is a 'them and us' and as for people being in fear of truth, isn't that inevitable?
O/h and me deliberately do not attend support meetings because we don't want to stare the future in the face. Cowardly? No doubt! It certainly doesn't mean we don't care or wouldn't help if possible. Seeing postings is different for us. We don't have to read them if we don't want to.
As for people fleeing. How appalling that anyone who has suffered so much, should be hounded by pwp who are, thanks to the good effects of DA's all right thank you Jack!
It appears there is another forum, where pwp's are happy to be well informed and are not so judgemental.
O/h and me deliberately do not attend support meetings because we don't want to stare the future in the face. Cowardly? No doubt! It certainly doesn't mean we don't care or wouldn't help if possible. Seeing postings is different for us. We don't have to read them if we don't want to.
As for people fleeing. How appalling that anyone who has suffered so much, should be hounded by pwp who are, thanks to the good effects of DA's all right thank you Jack!
It appears there is another forum, where pwp's are happy to be well informed and are not so judgemental.
Sadly its true pwp who suffer or have suffered from DA side effects, are being hounded out of this forum.
I too have had enough of the double standards from PUK on this issue. In addition there is a very arrogant "I'm alright Jack attitude" from a small number of members who were lucky not to experience the side effects. The final straw for me was this morning when the moderator deleted two thirds of my post.
It seems there is one rule on this forum for pro DA people and another set of rules for those who suffered side effects.
I too have had enough of the double standards from PUK on this issue. In addition there is a very arrogant "I'm alright Jack attitude" from a small number of members who were lucky not to experience the side effects. The final straw for me was this morning when the moderator deleted two thirds of my post.
It seems there is one rule on this forum for pro DA people and another set of rules for those who suffered side effects.
Quote "This thread has been created to give a voice to those people who are currently benefiting from taking Dopamine Agonists " Unquote
Thats the topic, lets please discuss it, stay on it and anything else is purely thread hijacking and as a Moderator I'd delete anything off topic too.
Now coming back on topic......
Which DA's are the most prescribed or/effective/popular ? I'm curious
Thats the topic, lets please discuss it, stay on it and anything else is purely thread hijacking and as a Moderator I'd delete anything off topic too.
Now coming back on topic......
Which DA's are the most prescribed or/effective/popular ? I'm curious
Ah Kyloe! That would be all well and good. If some pwp's who benefit from DA's were not so disbelieving and judgemental. Not out of context methinks!
Another question 
Those of you on Requip XL, at what time of the day do you feel the most benefit and what time do you take your medication.
All on-topic input would be much appreciated
Those of you on Requip XL, at what time of the day do you feel the most benefit and what time do you take your medication.
All on-topic input would be much appreciated
Hi Kyloe
I'm on Mirapexin Prolonged Release, so I probably can't be of much help to you. For what it's worth, I take my tablet at 9.00 am although I still have sleep problems. Maybe that's down to the PD, I don't know.
I'm sure someone with more knowledge than me will reply to you soon though.
I'm on Mirapexin Prolonged Release, so I probably can't be of much help to you. For what it's worth, I take my tablet at 9.00 am although I still have sleep problems. Maybe that's down to the PD, I don't know.
I'm sure someone with more knowledge than me will reply to you soon though.
Thanks for the reply Lilly, I take my one 8mg tab at 8.00am on the dot after having a light brekkie at 7.0am
Did have sleep probs too due to RLS, but thats been resolved short term with 3.75mg Zimovane tab taken about 10pm, then i get a good sleep through to 5.30am .
But long term I want to try alternatives, like lavendar and rescue night spray etc
Did have sleep probs too due to RLS, but thats been resolved short term with 3.75mg Zimovane tab taken about 10pm, then i get a good sleep through to 5.30am .
But long term I want to try alternatives, like lavendar and rescue night spray etc
Hi Kyloe,
I like most pwp felt reluctant to start on medication.I was adamant to the point of holding off for as long as possible.I had read about problems which put me off.However,there comes a point were things become so difficult that it is more stressful going without medication.Everyone has their own personal lives which govern their need to start medication.The most obvious being the continuation of employment to expected standards.
Once my mind was made up due to worsening symptoms and on discussion with my Neurologist.The first port of call was Azilect(Rasagiline)1mg daily(i take in the morning),to hopefully slow down the progression.Views are divided here,but i found an improvement with this alone.I was not as slow,felt more active as if given a boost.This i took or a month,and had and still have no bad effects.After a month Mirapexin(pramipexole)was added at a low dose with gradual increase for effect and adjustment.Some need anti-sickness meds whilst adjusting,i had no problems.I now take 1mg three times a day.Stiffness,including frozen shoulder type symptoms,tremor,co-ordination,speed doing tasks all sorted out.I found my interest in reading books renewed,my writing was smoother and it was such a relief.I have no bad side effects and hope this will continue.The other thing i have noticed is that an hour or so after taking my Mirapexin a.m,then take my Azilect,i can feel the added boost,improvement,especially when it comes to writing.
So as you can see,i get on with my life happily to the point that sometimes it takes something stressful to spark my tremor off to remind me that i have parkinsons.Without the meds i dread to think what i would be like.I am not about to try.
All the best
Titan.
I like most pwp felt reluctant to start on medication.I was adamant to the point of holding off for as long as possible.I had read about problems which put me off.However,there comes a point were things become so difficult that it is more stressful going without medication.Everyone has their own personal lives which govern their need to start medication.The most obvious being the continuation of employment to expected standards.
Once my mind was made up due to worsening symptoms and on discussion with my Neurologist.The first port of call was Azilect(Rasagiline)1mg daily(i take in the morning),to hopefully slow down the progression.Views are divided here,but i found an improvement with this alone.I was not as slow,felt more active as if given a boost.This i took or a month,and had and still have no bad effects.After a month Mirapexin(pramipexole)was added at a low dose with gradual increase for effect and adjustment.Some need anti-sickness meds whilst adjusting,i had no problems.I now take 1mg three times a day.Stiffness,including frozen shoulder type symptoms,tremor,co-ordination,speed doing tasks all sorted out.I found my interest in reading books renewed,my writing was smoother and it was such a relief.I have no bad side effects and hope this will continue.The other thing i have noticed is that an hour or so after taking my Mirapexin a.m,then take my Azilect,i can feel the added boost,improvement,especially when it comes to writing.
So as you can see,i get on with my life happily to the point that sometimes it takes something stressful to spark my tremor off to remind me that i have parkinsons.Without the meds i dread to think what i would be like.I am not about to try.
All the best
Titan.
Dear Kyloe, your Q reflects exactly the one I asked a helpline nurse (no nurse specialists around here), i.e. just when is the best time to take my Requip XL?I am sorry to say that I haven't got it figured out yet. I am currently taking 8mg at night aand 4mg in the morning. The consultant was of the opinion that the larger dose at night may aid sleep. It doesn't. But the morning dose gets me going. So I am considering swapping to 8mg am & 4mg pm. There just don't seem to be any rules to follow