I was diagnosed approx. 18 months ago. Currently taking Mirapexin 3.15mg per day and Madopar 100/125 6 tablets per day. I am having problems with my legs which are swollen, bruising from the knee down and pain 24/7. Don't know if this is a side effect of the tablets or another condition. Any thoughts?
If so, it's probably the Mirapexin which is an agonist. Not the worst side effect of mirapexin mind you, you can get mad delusional spells.
My mum had swollen legs, leading to Warfarin on a dreary weekly basis, years back. I think it stopped when she gave up Mirapexin, though can't be sure. Obviously she continues with Madopar and no swollen legs.
I would guess you're being prescribed too much Mirapexin, Belfast Boy. I was diagnosed at around the same time as you and I'm on only 1.05 mg per day. Even so, my ankles swell (albeit slightly) at the end of each day so, if you're on three times my dose, I'm not surprised you're having problems. If you take a close look at the leaflet which accompanies the tablets, you will see that swollen ankles is listed as a side effect.
If I were in your position, I would contact my neuro or PD nurse and ask for advice on how my dose of Mirapexin could be gradually reduced to a more sensible level.
Hello Belfast Boy,
There are loads of old posts regarding agonists and the side effects. I have been through the gamut of OCD's, skin discolouration and stiffness of the joints. Almost forgot the cramps! By far the worst is an undiagnosed condition which mimics angina. Every day whilst walking even a short distance I experience uncomfortable pins and needles in both arms rapidly followed by a chest pain which feels like somebody is tightening a metal band around my chest. I have had all the tests and although they know something is there they are unable to identify it. Both lungs and heart have been passed ok. I have been told I will have to wait until it manifests itself properly.
My Mirapexin has been reduced from 3.05 to 1.57 Sinemet 100mg introduced 4 months ago. Today I stated on 200mg of Entacapone and noticed an immediate improvement in mobility, fingers crossed. It has taken me two years to get to this point.
I am telling you all this because every body's PD is different and there is a lot of trial and error in getting the balance right.
Do contact you PD Nurse as soon as possible and get an appointment to start seeking what suits you best.
Watch out for the other side effects mentioned as they cause major upheavals and upsets, I sincerely hope that you do not experience them and that you get sorted soon.
Very interesting , Bogman, your post seems to be the first that mentions these angina attacks.
I have had similar experiences of pain in left shoulder and chest discomfort, but it only happens with exertion and even then not always (it did not happen on the treadmill), it disappears at rest and there is no visible evidence of heart disease to be found. I have been on Mirapexin now for 10 years.
I wonder how many others are there out there?
first of all welcome to belfast boy to the forum ,im sorru have bin havin these difficulties as well ans many other people includin my self,mira is a dopamine agonist drug ,which there is many people on the forum whom have had strong feelins about this drug,bogman ,the thigs u describe about ur self ring bells to meslf very much so,and im very sorry ur goin through these bad times also.belfast boy there is a gent who has had alot to do with these drugs on this forum ,he is away at the mo from the forum and is back on monday ,im sure he will be able to give u some very good advice about it,i hope u the very best ,we all do,there is very good friends here to meet,we tend to have good chats in the social rooms,all the best ali x
I have today taken my first Mirapexin tablet (0.088mg) following a diagnosis of PD on the 7th of September 2011.
Before today I have not taken any meds, as I wanted to be aware of the full effects on me, of my PD in it's untreated state.
The symptoms that most trouble me are feeling unsteady, anxiety and left side tremors. These symptoms are at a level that prevent me from working.
I will report on here the effects of the Mirapexin, good or bad, as I progress.
I did the same, waited a wee bit before starting meds (still not sure if i should have held out longer!) Do you know why you were started on Mirapixen in favour of other drugs? I've been given sinemet and am starting to question why neurologists decide on different initial treatments. Just wondering if you were given any firm advice or just accepted his judgement? Would be interesting to share advice/views/opinions!
Thank you for your reply.
The neurologist prescribed Mirapexin (0.088mg) and Clonazepam (250 micogrammes.
I have seen him only once, for a 20 minute assessment and diagnosis.
He was brisk, efficient and had no time to take questions from me.
I have no knowledge of PD medicines and am in the learning curve with all of this. The PD has come as a shock to me as I guess it does to all of us.
I too wonder why a neuro chooses a particular tablet. We know not whether they they do this on a basis of patient need, cost, or drug company incentives.
Thus far I have not taken any Clonazepam and only one Mirapexin.
The one Mirapexin which I took last night, as a try out, had the effect of reducing my symptoms overall and the downside of leaving me slightly spaced out during the day today.
The dose of 0.088 mg is, I am told, the lowest dose as a starting point with this medicine.
It is probably the case that practise makes perfect with this drug and that it takes time to adjust to it's effects and arrive at the exact dosage to suit the user.
Only by trying it can we discover the effects while being aware that drug use is easy to begin and can be a one way street to continuation thereafter.
I have not yet tried the Clonazepam as I am still reading up on that.
Also, I know two guys whom use this regularly (for symptoms not related to PD) and to put it mildly, their state of mind is not a place I wish to visit.
You and I are both seeking to control this condition (PD) without being adversely affected by "the cure".
I have yet to determine if this can be achieved.
It would be good to hear more of your PD experience and how you are affected by both the PD and the medicines you have tried.
I will look to see if you have any other posts I can learn from on this site.
Hi Arsene,Good to hear from you
I had a dat scan to confirm my diagnosis and on the day i was given the news was told that i would be prescribed some tablets. I was given a schedule to start on sinemet 62.5mg (lowest dose) and gradually build up over time to end up on sinemet plus. He did mention stopping at a point where i felt benefit before needing to continue at a later date, although i didn't really take this on board on the day! surprise surprise
Anyway, six weeks later i hadn't started them and think i upset him (he told me he was the expert!) after seeing my pd nurse her first response was to put off meds for as long as poss, but then she back tracked and suggested i started them after my holiday. Reluctantly i eventually have started on 1 62.5mg sinemet 3x a day (when i remember)
After being told that this dose would be non-effective, i have realised that i have stopped tripping (stubbing foot) and for a while my leg stopped dragging although this has started again recently but i'm not sure if it's down to stress as i've started back to college teaching routine again. Also my handwriting will temporarily improve. Things/symptoms seem to come and go/change. My toes have been on the move recently also.
One thing i'm curious about is i take these tablets 3 hourly from when i wake up then go without from say 2 or 3 o'clock and feel fine all evening. Is this because i'm relaxed or is it because i drink a lot of wine?? Do i actually need these tablets yet??? Should i be swallowing levadopa or should i take a risk with low dose D.A's? Either one i don't want the nasty side effects
I'm going to the stratford event and hope to chat to others in this same position and find out if anyone has been given sound factual advice. I'm thinking i may drop back to two tablets a day soon once workload settles a bit???? just need to see keep eye on symptoms and balance this out with disease or stress related. Obviously i know realistically meds are going to increase but i would like to be in controll as to when
I'm not familiar with the clonazepam you were prescribed and i think your'e right to find out more about it first. Also good to try one med at a time to check out effects on yourself. Forgot to say i also take Azilect 1mg a day. Was happy to take this one as i believe it might be beneficial as a neuro protector (PD nurse has witnessed this with old drug selegaline)
Phew..........I do chat alot!
Overall i'm right side affected, have lost 80% of left side brain cells (March '11) get tired a lot and struggle a bit with memory/cognition.
On a brighter note, i went prawning (on the rocks!!!)
at the weekend and enjoyed a fresh prawn salad for my lunch today
Down but not out just yet!
Thanks for your full reply. Very useful information.
I identify with your statement that the symptoms are variable and ever changing and the effects of the Sinemet are also seemingly not entirely predictable.
I am left side affected and so far my limited trial with Mirapexin has given me results I cannot exactly quantify, as it has reduced my symptoms, while also causing slight side effects including; mild eyesight blurring, feeling spaced out and detached, occasional sleepiness and yesterday, mild euphoria.
I am trying to balance the benefits and side effects by taking the med at low dose and at either bedtime or morning.
Taking it only once per day is giving me familiarity without any surprises.
I expect the effect of a medicine to be constant and known.
If I have a headache and take an aspirin I know the headache will go away.
With these DA drugs, things are more complex!
In the last two years, I thought I lacked fitness, as my trips to the gym and swimming pool became less productive and my performance has fallen off.
Now it is clear that the PD is the problem, not simply the ageing process.
My muscle groups do not do what my brain tells them to.
My right knee recently became painful for no apparent reason and neo-gout was the cause. This was remedied by a painkiller injection.
I suspect that there is a link twixt this and the PD.
Also I realise that my trips to the osteopath to loosen tight back and shoulders are as a result of the PD and not owing to lifting strain or gym work.
As the PD symptoms change so much from day to day and during each day, I have not yet adapted.
If you go to Stratford, my question is:
Which is the most effective of the many Dopamine Agonists; which ideally performs at low dose?
Hi Belfast Boy,
I have come across many taking DA's who mention the side effect of swollen ankles/lower legs.It is definitely a side effect.Be careful though to keep you cards close to your chest and not be as open as myself.You may find your medication ripped from your grasp by those running scared of DA side effects and those who want them banished.
I have had my Mirapexin totally withdrawn because i like to bet on the horses.One of the few enjoyments in my life,have been gambling for 27 years and always show a profit.Now i still bet exactly the same,still show a profit but am now solely on sinemet which i will gradually withdraw from in protest.
So good luck,i,m a Forty Seven year old guy being treated like a kid.So i will act as one.Have had deep discussions with professions and others over this issue and they are in agreement with me.The medication roller coaster is the biggest headache on here.I remember the time when i was not so disillusioned,now things are meant to get better,well i will put a forced smile on my face.I have had a multitude of problems these past years and all blame has been placed on the Mirapexin,which is wrong.The problems still remain and nobody listens to the other explanations,its simply withdraw a drug which was functioning perfectly well because the words gamble and compulsive have been mentioned.
So now i am in Limbo and extremely annoyed
How the medical profession treat people is diabolical
but that's another longer story
Arsene, there are not so many DAs. The most effective is probably Apomorphine, which is given by injection or continuously via a pump. The injection is effective within 5 minutes, but this DA is also the one with the shortest half life and the invariably occurring side effect of nausea will have to be prevented by co-administration of Domperidone.However Apomorphine is usually only given when the patient is towards the end of quality treatment and the drugs are no longer so effective and start to give problems such as (sudden,unpredictable)off-periods
As far as I can gather the mildest DA is the Neupro patch (Rotigotine).The most frequently prescribed DAs are Mirapexin and Requip. They are also most often the cause of Obsessive/Compulsive Behaviour. They have been around since the late 1990s. These two are much alike, some people do better on one than the other, both have a controlled release version(one a day pill)that some say is an improvement on the 3xday. Both drugs need to be carefully titrated up to the individual patient's required level. This is to get the body used to them and keep the side effects to a minimum. The beneficial effects will also be found to come on gradually. Keep the dose low and the titration slow. I have been on Mirapexin now for 10 years.
There are older DAs, these are the ergot derived ones (Bromocriptine, Pergolide, Cabergoline), they lost their populartiy when they showed to affect the proper functioning of heart valves in some patients. So they are rarely now prescribed.
As a newbie I am impressed and thankful for that information.
Titration is a new word for me!
I will heed your advice.
HI ..IS IT OK IF I JOIN IN ...
MY MEDS REGIME IS FAIRLY HARSH BUT WITHOUT IT oops i simply dont function ...with them i have good life within obvious parameters ...
this regime taken years to get to but roughly ..
7 am MADOPAR ANS ENTACAPONE
9 AM AMANTADINE
10.30 AM PUT UP MY APOMORPHINE PUMP ...TILL 10.30.PM
7.30 MADOPAR AND ENTACAPONE
10.30 TAKE OUT APOMORPHINE LINE
BEFORE BED REQUIP XL AND SINEMET CR
...SOUNDS MORE complex thanit is ...it suits me ..not evrey one can get used to putting their own needle in ...etc ...
very true that all parkisons patients have slightly differenr symptoms also...
hope this of some help ...
Hi Arsene & Kate,
i too found Kate's advice informative, i've realised that it's about time i started to write this info down so that i can look at it and digest it all at a later date to get full meaning from it and hopefully help me to make more informed decisons. Funny but i just wrote this info down and realised how rubbish my handwriting was, i wouldn't normally write at night time and compare this pd symtom to relation of benefit of meds etc. I've always thought that in evening i'm usually more symptomless? So maybe i'm not really weighing up the true benefits of meds accurately because obviously my day time routine is more stressfull than evening routine?? On the other hand i mentioned alcohol before and tonight is no acception
It's my o/h b'day and have downed a bottle of champers(did share a glass or two!) followed by a couple of glasses of vino and still feel quite sober ( and no i'm not an alkie) so does this have a beneficial effect or is it i'm just more relaxed???? least the wine won't give me dyskenesias
Arsene - yes iam going to Stratford and intend to ask people lot's of meds questions but expect to come home even more confused! lol
The knee thing - i haven't had pain as such but in the last year or two i've noticed that my knee suddenly gives way or lcoks in etc so guess this may be a pd thing!
Bottoms up! Cheers
hi arsene, i agree with kate's posting regarding Apomorphine.
In the last 10 years i have completed the full medication circle! I started off on DA's, then went on to levadopa and now I'm back on DA's. However there are a couple of big difference's with regard to my second venture in to world of DA's.
Firstly I'm now taking Apomorphine as opposed to Cabergoline. As kate already said there are some key differences between them. However i am under no illusion whilst I'm currently benefiting from being on Apomorphine, there is still always the risk of unwanted nasty OCD side effects? Which brings me on to the other big difference, my awareness of this risk is along with a support network, now in place to help reduce that risk!
The key to getting the best out of any PD medication, is to be fully aware of the side effect risks in the first place? Then to effectively manage them via your medical and family support network! This way you will hopefully get the best result from taking your medication.
Good luck and i wish you all the best.
I'm watching from the sidelines with much interest, Bluey me old mucker.
The treatment of PD is symptomatic.
All drugs have side effects.
The benefit of the drug has to be greater than the side effect(s).
Treatment will span a number of years, for some several decades.
So management of treatment is very important and involves the patient, their carers/family and the neurologist. The neurologist needs good feedback in order to prescribe the correct type of drug and dose, this is in PD especially important , because we present with different symptoms and different reactions to the drugs.
I believe firmly that the patient (and/or their carer) will do better if they have some (preferably as much as possible) knowledge of the drugs available, their impact on symptoms,their side effects and their limitations. I remember reading somewhere that patients attending Support Groups were generally doing better than isolated ones,this was thought to be because they were more knowledgeable about the disease and its treatment.
For me it is also important to retain a certain amount of controll over the situation I find myself in for as long as possible.
"...patients attending Support Groups were generally doing better than isolated ones..."
You may be right in thinking that this could be because they get more education and information from the others, but it could equally the case that isolated people may be lonely and/or depressed, and thus demotivated. However they may have phobias about meeting strangers, or crowds.
Or it may be naturally self-selecting, i.e. those who are doing well WANT to attend support groups, to show everyone how successful they've been.