Hello AB and thanks for responding. I'm suprised that you take XL twice a day since its a slow release over a 24 hour period..is'nt it? If so then it would still be releasing when you take the next dose? I did'nt realise one could split the dosage, this is interesting and a good question for my PD nurse
Thanks for the response Titan, wish i could still write long posts like you do
You've got me thinking now kyloe! I checked the instructions on my requip xl boxes & all it says on both the 8 & the 4 is take one a day. I am sure that the helpline nurse advised to do whatever suited me. I should be grateful to hear what your PD nurse thinks, since I do not have one, my GP says to follow the consultants advice & I cannot get past the consultant's secretary!
I do remember asking the question to my pd nurse when i was on 6mg (4+2) and was advised to take both tabs together as they slow realease over a 24 hour period. I'll certainly ask again and let you know
I've tried all of the DA's. I preferred controlled release because it gave me a smoother day than the regular dose. It treated my motor symptoms very well ~ especially the restless leg during the night. Shame I had other side effects and had to withdraw from them because I really didn't want to introduce levadopa this early.
I benefited from sleep so didn't have to start my morning dose until I'd been up a good hour. Some people struggle first thing in the morning so have to take them as soon as they wake up. It's trial and error. I slept well on the lower dose of DA but once I passed the therapeutic dose, my sleep pattern changed and I hardly slept. Unfortunately, due to sleep deprivation I developed hallucinations and paranoia but this calmed down once the dosage was adjusted. We are all so different in the way we respond to the drug treatments.
I strongly advice you to keep a drug diary and make note of drug dosage, timings, motor and non-motor responses and review it regularly with your PDN/Neuro. I think when introducing a DA you should be reviewed every month for the first 6 month because every 3 to 6 months isn't enough.
Thank you for contributing such excellent, constructive advice, Cutiepie. In the light of your unfortunate experience of the downside of DAs, it's particularly valuable.
Everyone who is currently being prescribed these drugs will appreciate receiving the benefit of your unbiased input, I'm sure. This is exactly what we need to enable us to make up our own minds about whether to accept or reject them.
Hi Cutiepie, The area you have highlighted regarding monitoring is indeed one of the problem areas for those embarking hesitantly on DA medication.Personally,i have had an appointment every 6 months with my Neurologist.I know this is not the case with many,everyone should be seen at least every 6 months.Six months seems to fly by,like xmas coming around each year.If any problems occur between appointments i can get in touch with the local pd nurse.I have had to call for advice on a few occasions.I know many do not have access to a pd nurse or regular appointments.Indeed i was not aware of a pd nurse in the area until enquiring on this forum and given the details.That is the only fault i can level towards my Neurologist,apart from the usual feeling rushed scenario that presents itself at nearly all medical appointments. I am definitely in favour of your suggestion of a monthly review, especially when first embarking on and considering the importance of choosing the right medication,getting the balance right,and avoiding any problems. All the best Titan
Really interesting information being given here about DAs. My o/h is on Mirapexin 0.7mg 3 times a day but not on the full maintenance dose yet due to a some hallucinations (which have now settled down pretty well). I was really interested to hear about when people start their first dose of the day. This was something that the GP didn't know about when we asked and said just to give any time a go and see what worked. Not the best advice really. However, a bit like Titan we worked out a schedule and my o/h takes his DA about an 3/4 of an hour before going to work as he finds this gives him the added boost he needs to get started in the day. It can make getting ready a bit slow but the benefit he feels is worth it when he gets to work. Also, thanks Cutiepie for your advice about the drug diary. I really think that this would help to show the effects of the drugs and their timings. I also agree that there should definitely be a review every month when you first start meds as it can be a really scary time and with consultants being unreachable (We have also come up against the dreaded secretary) and the GP not really having enough information it can be frightening and stressful when something happens and you need an answer. It is one of the reasons I am so grateful this forum is here as there is always someone there to give advice.
You say your o/h is on Mirapexin 0.7 mg 3 times a day but has not yet reached the maintenance dose. By my reckoning (and I’m no mathematician) that is 2.1 mg per day. The leaflet quotes 1.05 mg as being the maintenance dose, which means your o/h is on twice that. This might explain the hallucinations. It’s true that he now seems to be coping well, but I wonder if he might be able to function just as well on a lower dose.
Whilst I would never advise altering the dose without obtaining expert advice, it might be worth a mention at your next visit.
I was dx in 2003 and started on mirapexin titrating up to a dose of 0.7mg x 3 a day within a few weeks.
This was steadily increased as the disease progressed 2004 0.7mg x 6 a day, 2005 0.7mg x 9 a day finally 2006 0.7mg x 12 a day. Which is 8.4 mg a day, some way over the maximum dose of 3.15 mg. At this point I was put on sinamet plus as well as the mirapexin and the selegeline 10mg which I had been taking since 2004.
I dont thnk anyone would be put on such a high dose these days, as the maximum dose is now stipulated on the information leaflet. At the time I recall the dosage was advisory but could be increased by a neurologist.
I did suffer from OCD/ICD probably straight away, but more noticable as the dose increased and also with with the introduction of sinamet in 2006. In 2008 I raised the issue with my neuro with a view to coming off the drug (because I had to, to remain in work, not because I wanted to.) After trying to come off the drug I found I became increasingly depressed. I also found that my body felt like it had ants under the skin. I returned to a 0.35mg x 3 a day dosage and now take it in one slow release tablet with selegeline as before and 150mg x 4 a day of Stalevo.
In my experience the mirapexin was beneficial in that it extended the period without the need for levadopa, it helped my body movement to improve, took away muscular pain in the back and gave me a feeling of well being.
On the negative side the OCD problems were instrumental in my having to finish work early and had a detrimental effect on my relationship with my partner and cost me a few hundred quid. Fortunately gambling was not a problem for me.
I would say that it has been learning curve for all concerned. More explanation and careful monitoring of the drugs would certainly help the situation. It is difficult for the medics to get it right because the feedback is not forthcoming from the patient.
Problems with behaviour due to das have been covered elsewhere ad nauseum, however, I will say this: there is only a problem when you perceive it to be a problem ie when it affects your lifestyle or impinges on others.
There is a lot of fear of this issue because there are lawsuits being bandied about which make it difficult for medics and drug companies to be as open as they should. I am sure there are deserving cases where it would be appropriate that people received financial compensation but these would be relatively minor numbers of people and once this issue is dealt with should be closed out if proper patient advice is implemented. I believe that compensation for damages incurred are appropriate in certain cases, however, I dont believe that operating a blame culture helps anyone.
I also feel that we as patients are largely ignored. My own experiences are very similar to others I know who have had behavioural issues. These could be utilised better. Statistics to my mind on this issue are meaningless. If only one person is affected by these drugs then they deserve the correct treatment and our support.
In conclusion I believe that das are beneficial as a treatment for pd provided there is patient awareness and proper monitoring.
As regards this issue as a whole, remember this, we are all ill or caring for someone who is, we all need help and support from each other. That support needs to come from the whole of this community.
Hi Lily, sorry for the confusion He takes mirapexin 0.7mg three times a day which makes up a 1mg dose overall (I really struggle with the titration stuff to be honest). He is supposed to be on Mirapexin 1.1mg three times a day which is the largest dose I think but the GP has held off for the moment. He is isn't on the slow release Mirapexin but we are going to enquire about it at his next appointment as others on this forum have found it to be beneficial.
The maximum dose for mirapexin is 3.15mg as stated on the leaflet. The dosage can be confusing because they refer to pramipexol and pramipexol salt which have different equivalent dosesand to tablet sizes that we dont use.
The maximum dose equates to four and a half 0.7mg tablets.
When I was on mirapexin alone I took them at 7am / 1pm / 9pm and found those timings to be effective for me.
When I started taking a lower dose because of the OCD I used normal tablets.
I have since gone on to slow release which I now find ok but as I take it to avoid depression / restlessnes / agitation it would be difficult to give a fair comment. Also the stalevo I take would account for the majority of the improvements I feel.
Some people take domperidone when they start the drug to avoid sickness. I did at first but I found I didnt need it as I tolerated the drug quite well physically.
Oedema can be a problem but again I never got that symptom.
The OCDS kicked in on the higher doses for me. As I know of several people who take mirapexin and have no serious problems it would appear to be the higher dosage ie above maximum that cause problems rather than the length of time taken. Of course with all drugs theres always an exception to the rule and it may affect someone else entirely differently so it pays to be aware of behaviour changes.
Dear Leyther, thank you for your astute,informative & helpful post. One (more!) thing that puzzles me - the choice of medication prescribed. Is it based on clinical observation of symptoms, personal preference of consultant, financial/supply constraints? I know that I, in my ignorance, would not have queried my prescription. Pre diagnosis one tends not to have knowledge of the treatments available for possible conditions
I dont understand the drug selection crieria either but I have a theory it may be something to do with which drug company provides the best tickets for the FA Cup / Wimbledon etc.
Is'nt it a fact that we all have some type of compulsive behaviour whether we are on drugs or not, ie some folk find certain tv progs compulsive viewing, some people just cant resist chocolate, sugary things, fresh cream cakes, betting, gambling, shopping, and then there are compulsive liars, one could even argue that any form of hobby is compulsive, I guess the line from what what is acceptable in society and when it is'nt is when one over indulges.......but then
Hmmmmm......I must try and reduce my 3 spoonfuls of sugar in my mug of tea
Compulsive behaviour is very different to pathological behaviour
Compulsive = always must have 3 spoons of sugar in you tea, but no real harm done.
Pathological = must keep pouring sugar into your cup of tea and cant ever stop. Even if there is no tea left in your cup, or in your house or in the UK or the world come to that! Nope that don't matter coz you just keep pouring and pouring and pouring that sugar....
So does that mean those of who are healthy but have pre existing compulsive traits are more susceptible to pathological compulsive traits if we then suffer from PD aand subsequently take DA's
The group of pwp who are at the greatest risk of developing pathological OCD from taking DA's are; Young onset PD sufferers, with a family history of OCD or other mental health issues including depression. They also found a couple of other factors increased the risk, such as living alone and having a risk taking job!
I can identify with having compulsive behavior prior to diagnosis of pd.
I have always rinsed three times when I brushed my teeth for example.
The pathological behavior was only related to things that gave me a kick, which I would do all day given the opportunity. That seems to be the difference. The doing something to excess until it loses its original point.
I think this is the thing that people who haven't experienced the problem cant get their heads round. For sure there are people without pd who use the internet for kicks. The difference with agonist induced compulsion is that you need to find something that gives you that "dopamine spark". This can be an image that appeals for example, it then becomes an obsession to find exactly what your looking for to the point that it becomes totally out of context.
Prior to taking agonists I was a very cautious and moral person, however, the thrill from taking a risk would again create that spark. Each risk taken leading to another greater one. Morality guilt and conscience fall by the wayside as you take more risks. In my experience the lack of these restraints was only in relation to my obsessional fixations etc. ie I had no desire to go out and commit criminal offences ( I was to busy on the pc even if I had felt that way inclined).
I found that my behavioural changes were born out of my own personality but magnified and made obsessive. Things that I would only of considered fantasy I set out to make reality. The other thing that I think is key is circumstance, for example I was encouraged to work from home by my employer which allowed me to do as I pleased through the day. The oddest thing is that you are totally aware off the situation but cannot stop. If what you are doing is not problematic to your life then it could go unnoticed.
The other factor is the amount of drug you are taking and your sensitivity to it and possibly the length of time you take it for.
In my experience you start off with minor changes to personality which due to individual circumstance can become uncontrollable obsessions.
I would still advise the use of DAs provided awareness and monitoring of the patient are undertaken.
Hi, I come on this friendly section shaking my head in disbelief.Having read Goldengirls section and having supported it early on,it seems latest postings on there appear to be causing more angst by segregation.Should we not be trying to get on,pool views and work together.Pwp who see themselves in the now referred to 1 in 4 post on this friendly thread.I don,t see an issue with that.What is so different the other way around on Goldengirls thread. I feel that going down two separate one way streets is not the answer.Also the grey area is those who may,or think they could be having,or in danger of suffering problems with DA's.Well that could be any body taking Da's,even those adamant that everything is fine. I continue to believe that people should have the right to post their views where they want to as long as things remain civil and discussions don,t get abusive.After all this is a forum for discussion and we should all be working together. All the best Titan
