Dopamine agonists


#1
This thread has been created to give a voice to those people who are currently benefiting from taking Dopamine Agonists and who would like to pass on their experience to others. It is to be hoped that this will encourage the newly-diagnosed, in particular, to ask questions with a view to balancing these benefits against the already well-documented devastating side effects.

#2
Hi Lily,
Its good to know that you are doing well.Thanks for setting up the new thread.You have summed up everything perfectly in your introduction.This is the place were we can discuss the benefits and positive side to taking DA meds.Maybe discuss any hiccups as well,as there will be some,as with most medication.Will post more again.
All the best
Titan

#3
Hi Lily,
Thanks for setting up this thread , a safe place for many of us to share the good things this medication has done for us , and so encourage others who are thinking , 'shall i , shan't i ' to make an informed decision.
Best wishes.

#4
“The way to overcome negative thoughts and destructive emotions is to develop opposite positive emotions that are stronger and more powerful.” :sunglasses:

I truly hope that this thread will not turn into a fight between two opposite sides of thoughts and paths.

One of the reasons why dopamine agonist drugs can be of great use in treating diseases like Parkinson’s is due to the diminishing presence of dopamine in this condition.
A steadily decreasing supply of this neurotransmitter translates too many of the developing symptoms of the disease.
While in late stages, giving medications like straight dopamine or L-dopa might be part of treatment, in early stages, a dopamine agonist may be of most use in preventing symptoms from progressing.
In conditions like RLS, a dopamine agonist may not only slow disease progression, but could result in complete cessation of symptoms, while the drug remains in use.
There are a number of dopamine agonist medications that are in use for different conditions.

For RLS, drugs like pramiprexole (Mirapex®) and ropinirole (Requip®) are common choices. With Parkinson’s disease cabergoline or bromocriptine might be the best choices. Other medications with dopamine agonist properties exist and might be chosen instead, depending on a patient’s individual circumstances. Medications for RLS may be useful in calming restless sensations and for Parkinson’s may be able to reduce involuntary movements.

Such drugs do have side effects including possibility of increasing involuntary movements, or causing severe mood disturbance, especially in mood disorders.
One of the more profound reactions to these medications is change in behaviour that could include development of compulsive or addictive behaviours like gambling, drug use or sexual addiction.
In the first decade of the 2000s, a number of lawsuits have arisen against drug companies for not warning people of these serious effects, which were certainly known earlier.

While these drugs may be viewed as important, all people contemplating taking a dopamine agonist should make themselves fully aware of potential side effects. This allows the individual patient/family to report any side effects early and get medical advice on other treatments that might be more appropriate.

One member on this forum actualy quoted " As soon as I discovered it was down to the drug I hot footed it to the neuro and demanded it be stopped pronto!"
This above quote shows that you can be aware of the problem when it arises.

In my own humble opinion and I know this will go against the current flow as I type.

I believe that while we need to make people aware of the situations that may or may not arise when they are prescribed or take thesedrugs ; many people should be aware that there are also thousands out there that benefit from this medication / drugs and have a good quality of life.

I also believe that the NHS are doing something about informing patients with regards to their use and it is up to the individual patient/family to investigate what they are taking as medication.
(Perhaps they (The NHS) should have started sooner, but,we can’t turn back the clock of time)

I for one, even check the sell by date on a tin of Tuna Fish prior to purchasing, why not check with the medical/medication information sheet , prior to placing something in my mouth? Something that is going to involve my health with a degenerative disease I'd be even keener to do so!

What I don’t want to see is people scared so much that they don’t take medication of any sort because they get so mixed up and say;
“I’m not going down any line of medication, it’s too frightening!”

You may not like this comment so I apologise if it comes across as impertinente.

Over the past months it seems that this whole story of PD Medication has been take into the hand by a few members and if you just dare to say a wrong word you get knocked down.

Lets hope with this thread we can bring some serenity back to the forum where people don't feel afraid to post.

ncn.

#5
i would like to say my opion ,wellmy expence really with out goin in to detail to put peoples off,i was on mirapexion ,it actually did me pd good , but my down fall was i had servere probs with the side effect which go a hold of me,now this does not happin to alot of people ,so plese dont be put off ,it happin to me ,but all meds no mater wot they r have side effects small or large,and some people get effects and some people dont,ihope i have not rote this down rong ,ive read it back before i post it ,just wonna put my bit x:smile:

#6
Between 2008 and 2010 the University of Pennsylvania completed the largest ever Research Study undertaken into, establishing the link between Impulsive control disorders and Dopamine Agonists. The study involved 3,090 Parkinson's patients across 46 centres and was done over 2 years. The report published in May 2010 made the following conclusions;

528 out of the 3,090 patients developed serious ICD's (Impulsive control disorders) while taking DA's. This represented almost 1 in 5 of people involved in the study. The ICD's highlighted were, pathological gambling, compulsive sexual behaviour, binge eating and compulsive buying. Furthermore 190 of the 528 patients developed more than one Impulsive Control Disorder. The report also said, patients taking DA's were almost 3 times more likely to develop ICD's than those taking non DA parkinson's medication. In conclusion the study said that more needed to be done to RAISE AWARENESS amongst Patients, Physicians and Family members about the potential ICD risks associated with taking DA's.

#7
Hi ncn,
Like a breath of fresh air,your posting sums the situation up nicely.It is good that common sense is prevailing on this thread.On a forum which i feel is here to support and help pwp,not scare them.I remember when i first came on this forum.The nervousness of that first posting.Trying to take in all the available information.Reading other pwp's accounts and being comforted in the fact that i was not alone.
Starting medication is a big step and i am pleased that there are some of us prepared to give our positive take on DA's from our own personal experiences.I don't see this as a fight against the DA campaign.I see it as a sensible alternative point of view.
Hi ali j,
Don't you worry about what you have to say.You have just demonstrated that concern of coming forward.Worrying about what you have written,or should you post for fear of being shouted down.What you posted makes perfect sense and i hope you continue to post your thoughts and feelings.I remember coming to this forum with apprehension in January and the warm welcome and support you gave me.
All the best
Titan

#8
blueeyes, after reading the introduction by Lily, I think your post does not belong under this subject, which wants to highlight the benefits of DAs.
NCN, cabergoline and bromocriptine are certainly not the first choice for PD nowadays.For PD too the preferred DAs are Requip and Mirapexin. One thing has changed over the last ten years: several neurologists are no longer deeply committed to DAs and not afraid to start a new patient on levodopa medication,even the under 70s.

#9
Welcome Lorna, Titan, ncn and Kate.

Kate: I hope you will stay with us, as your knowledge of all things medical together with your unbiased views will be very useful, I’m sure.

ncn: I would like to echo Titan’s sentiments, and I wish to add that I read your personal story on another thread recently and found it very moving. The complete lack of self-pity or blame made it particularly poignant and I look forward to hearing from you again.

Alij and blueeyes47: can I respectfully ask you to re-read the opening paragraph of this thread? I’m sure you will agree that your views are already well catered for on at least two other threads and I, for one, will not be posting anything further on either of those although I hope Kate will feel free to lend her expertise to all the threads equally. Good luck with your campaign; let's remember that we are all victims of PD and need to work towards the best outcome for everyone.

#10
Kate, i merely posted information from the most recent and comprehensive piece of research so far, highlighting the link between Dopamine Agonists and Impulsive Control Disorders. I'm posting this so as to balance the risks with the benefits being highlighted on the thread. After all given the research finding were only published in May of this year, many pwp may not be aware of it.

#11
Lily, i don't need to re-read the opening paragraph on this thread thank you.

Furthermore i don't agree with the conclusion reached in that paragraph, when you say the "already well documented devastating side effects". In fact i think its the opposite, because currently what is documented regarding side effects (depending on where you look) is in some cases 4 or 5 years out of date.

#12
Apologies for any confusion, but when I said "already well documented devastating side effects", I meant on this forum.

#13
lily im not to sure wot i rote rong or done really ,ijust rote how i felt ,i thought i was doin somethin rite,but it not mate i wont post on da threads agin when ever i do i seem to get it rong somehow,der me i think agin

#14
Dear Ali,
Don't be worried. You simply stated that you were on Mirapexion , and while it did help your P.D, you had to stop because of unwelcome side effects.
This is very helpful to hear that you actually recognised that these side effects needed to be addressed , and it resulted in you coming off the medication.
Please don't be upset, you posted valuable information.
Take care and all the best , as always.

#15
Hi ali j

You didn’t write or do anything wrong, but it’s probably best if we keep this thread for talking about the positive side of DAs. If you are one of the people who has suffered side effects, probably the best place to post is on one of the other DA threads. In an ideal world, we would all be able to discuss DAs on the same thread, but unfortunately life isn't like that.

Sorry for any misunderstanding, which I’m sure is the fault of my clumsy wording. I certainly don’t want to offend you in any way, so please don’t take this personally.

Best wishes

Lily x

#16
I posted my reply before I saw Lorna's. Lorna is quite right.

#17
Hi,
I come to this safe haven of the forum.As the heading says,"Dopamine agonists","A friendly place to talk".It seems that a lot of unfriendliness has ended yet again in mass deletions.Amongst it all,one posting by myself which by being first on the list appears to be the catalyst.Well i said nothing nasty,but apparently received abusive posts back.I never read any of the subsequent posts,but have been told of their content.
I just want to say that i think all people using this forum are entitled to their views aired in a friendly way.Often there are differences in opinion,sides are taken,peoples views defended.However to continually attack and put down a persons views with such nastiness does the forum no good at all.
I for one have always tried to be non abusive and in fact have always been very sympathetic to those who have had past troubles with Dopamine Agonists.However,myself and others are never allowed to give our positive experiences on these drugs.Every time we do,we are met by confrontation,which generally gets deleted.Why do things have to go to these extremes.
Can everybody not have there opinions ,voice them calmly and constructively,then receive replies of an equally constructive nature without everything getting out of hand.
This thread was set up by Lily following a similar incident a while back.Those who feel like expressing their thoughts should do so in a friendly manner as the title suggests.This should be the case with all the threads on the forum.
I am also of the belief that certain people leaving the forum should reconsider.One person in particular "heading to pastures new",i believe has an awful lot to offer.We have had our differences but respect all that he has done and does for people using this forum.If it was in direct response to my defending post which ultimately made you feel this way.Then all i can do is send you my apologies for making you feel this way.Can we not all pull together,for a while i thought that's where things were heading.
Feeling quite sad,just wish the forum unity
No personal insults,just friendliness and advice
All the best
Titan.

#18
Quote"This thread has been created to give a voice to those people who are currently benefiting from taking Dopamine Agonists and who would like to pass on their experience to others" Unquote

This seems as good a thread as any to start as a newbie since I currently take Requip XL 8mg :grin:
Been on it for over a year now with no known or obvious side affects, in fact quite boring really waiting for something to happen thats either sinister or out of character but it has'nt happened yet. My family have been made aware to look for changes and for me i'm assured that if any serious side affects develop someone somewhere will notice.
Other meds i take are related to my Osteo Arthritis.
I also take as supplements Chelated Magnesium, Vitamin D3, Neurozan, Omega 3 fish oil, Propolis, and Ensure Plus.

The sun is beaming into my lounge as i write and the birds are chirping whilst busily nest building for the next generation, my hens are chuckling as hens do when happy and when the sun is shining, and hopefully there will be a nice fresh egg in the henhouse nest box for breakfast. Too good a day to sit here typing, spring has sprung and its good to be alive and still kicking so its a good day to try tidying up the garden :laughing:
Have a fun day all.

#19
Your post is like a breath of fresh air, Kyloe – just what the doctor ordered! We need more like this.

Thanks for writing in, and welcome.

#20
Hi Kyloe,
Welcome to the forum.I like your introduction,so positive and full of warmth.I am also pleased you are amongst those of us who benefit from taking your medication and like myself have suffered no unwanted side effects.It is good and important that you and your family are observant and on the look out for potential problems,as they can and do occur.
Did you have a good read through and research before posting as you seem to be doing all the correct things necessary to ensure your well being and i hope you will benefit from using the forum.I am sure,going by your introduction,that you have a lot to offer this forum also and look forward to future conversations.
I myself am 46yrs of age and diagnosed in Nov 09.I am on Mirapexin and Azilect.Like yourself,i have suffered no side effects and my quality of life is much improved by taking this medication.
The description of where you live sounds idyllic and your posting has brightened the start to my day.Like a breath of fresh air.
Again,welcome and chat more again sometime soon,
All the best
Titan