i have been diagnosed with PD in 2013 but I had the symptoms for a lot longer. I think the medics did think I could have PD as I was in a good shape. once diagnosed I started with Selegiline but gradually ended up with the cocktail shown below. I am still having off times but i can manage. I have been seen by three different consultants in the past 5 years and I have the feeling that they prefer to add more medication rather than taking a holistic assessment. have you had a similar experience? am I overmedicated?
1. Selegiline 1.25mg - once in the morning
2. Ropinirole 18mg - once in the morning (2-capsules)
3. Madopar 600 mg - 6 times of 100 mg each throughout the day
4. Opicapone 50mg - once last thing in the evening
5. Amantadine hydrochloride 100mg - once in the morning
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Xabojuro2
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IMHO this is not an unusual amount. It would be on the high side but we dont know whether you are a big person or small. how long you have been on meds, your age, how physically active you are, what symptoms you have that suggest over medication to you... so what do we base our comments on, i think they reflect our own biases.
As to medics, i find they do their best in the limited time they have (many countries have very few neurologists) and are totally reliant on how accurately we can communicate our experience. I do think systems are far from ideal for something so complicated as Parkinsons.
Do you feel overmedicated or are you just thinking you should be able to manage on less meds.
I am 51 and weigh 73 kg. I'm in good shape and on Monday to Friday, I do a hard gym session for at least one hour. At the weekends I go for a run or a Nordic walk. before my diagnosis, I competed for half marathons and 10k distance. I ran half marathon in one hour and 15 minutes. and my PB 10k is under 34 minutes.
my main problems are fatigue, stiffness and gait.
I feel over medicated and think I can manage with less. it will be nice if I could end up with 8 mg of Ropinirole and 300 mg of Medobar . dailly.
you're right it's not always easy to communicate the symptoms and Doctors are responding to what the patient tells them.
Many people I know who are doing well are on combination therapy like yours. Im guessing you may have recently added the opicopone (within the last year). Often people find they can reduce levadopa meds once they are on a COMPT inhibitor. If you havent reduced sinemet since adding it you could discuss this with your neuro.
Ropinerole XL comes in 2mgs so you also could look at reducing that. I find agonists great for movement, i was on 16 requipxl and slowly reduced to 8mg xl but any lower and i dont have good control
I would be very wary of changes. You sound like you are dong really well on your current regime. Far better than many on here who are just coping while looking for the magic potion.
Do you havee family and work commitments. I would want to be as active and as well as I can be at your age rather than compromising for the sake of some future hope. But I always remember my first neuro who said “i like to under treat rather than over treat” I agree but its finding that place.. Good luck
you know your stuff. yes, i have added opicopone recently. but did not reduce my Levodopa. I did not know you could and/or should that.
my attitude so far has been:- I will live today and do everything I can to have a better day today and deal with tomorrow when tomorrow becomes today.
But at the same time, I think maybe I am being stupid and will pay a heavy price tomorrow.
I have a wife but no kids. I work full time but likely my office moved next door to where i live (just coincidence ).
I am active and do lots of gym work and outdoor walking and cycling.
the other thing which I failed to mention is that I am considering the B1 high dose treatment and will be going to Italy in Jun to meet with Dr. Antonio Constatini.
I am also lined up for DBS this Autumn.
I think it is in my character to panic and throw everything at the problem i am facing
I like your advice of gradually reducing ropinirole.
i am reading this book g.co/kgs/HFkRhz and so far i don't what doses was/is John on. But i like his attitude of i will do what it takes to get going.
Your attitude “I will live today and do everything I can to have a better day today and deal with tomorrow when tomorrow becomes today” is exactly right. No matter what you read it is not the medicines that make your PD worse over time it is the disease progressing.
I urge you not to jepodise your well state now because of some half truth you read on line. There are no miracle cures, there is progress in research but we are not there yet.
Your best approach is to eat well and exercise and enjoy your life and with your wife attend the World Parkinson Congress in Japan next year. There you will meet hundreds of other people with pd along with scientists physicians physios etc. Its life changing for many people.
I know of John, havent read his book but I imagine it is good.
come to think of it all the talk against medication is always about unknown future state .. one thing that works in favour is i love the gym and exercise is wired in my being
Since I have a few friends and family around me who want to manage my expectations and tell me that what ever protocol I am trying now may not last long, I have created a simple saying.
ONE DAY FEELING GOOD
IS BETTER THAN ONE DAY FEELING BAD.
They want to help but do not understand how great it is to feel good, even if it is for only one day.
IMHO, for being diagnosed only a few years ago, it is a lot. You're taking 1 of every thing. Too often we want to take a pill and make everything go away. Try learning to cope with the symptoms. You've got the rest your life to take drugs.
Thanks. I think i was in denial in the past and i did not look after myself well. this perhaps lead to needing more and more medicine. you are right i need to cope with the symptoms.
I was diagnosed in 2005, my current meds are Madopar Dispersible 4 x 125mg daily. I have times where I cannot do anything except wait for the meds to work. Neurologists are not much help!
October61 that is a very low dose to get you through the day. Of course i djont know your age but i would be noting how long a dose lasts and that is the tme interval you need between pills. It is often 2 hrly by your stage.
I'm not a medical professional so I can't say. But I once waster medicated witch/ld and other meds and it gave me terrible side effects. I think less is more. More meds, more side effects.
well i think your way over medicated as well as the more you take the more your body will want.and as the years go by it will get worse for you im copeing well with 1 madopar 3 times a day 200/50mg...1 madopar 3 times a day100/25mg inbetween taking the 200/50mg tablets..1 thiamine tablet 3 times a day 100mg.1 mannitol tablet 3 times a day..hope this helps.
I think you are on 900mg ldopa a day motherfather and he is on 600mg ldopa and requip 16 eqivalent to about 320mg ldopa sototal 920 day so you could say you are both on similar amounts
yes you could be right hikoi i just had a think about that, if anything he should be taking the same madopar as me. as for the azilect that did nothing for me and i know nothing about the other pills hes taking.the madopar for me is the best..im taking the thiamine now but im not sure if its the same as the one with h c l so ill check out the differents tomorrow.regards.
hi xabojuro well i had a good think about what you asked and as far as your madopar goes im surprised your on such a low dose i take 1 madopar 3 times a day 200/50..plus 1 madopar 3 times a day the same as the one your taking.plus the patch,every day.i dont take my first meds till 9.30 .so the 200/50 at 9.30 am the second at 2.30 pm the third at 8,30 pm...in between i take the ones your taking one at 12 pm one at 5,30 pm and one at 11,pm...i take the usual vitamins.im starting now on thiamine tablets 400 ml 3 times a day,i have ordered some 500 ml capsules so ill up it 1000ml 3 times a day ,and continue untill i find the right dose for me.if not ill go get some more stem cell treatment in china.so for my advice for you is to try taking 1 200/50 3 times a day plus 1. 3 times a day of the madopar u are taking..im not sure of the other meds except the selegiline i give that up as it did nothing.for years.try the nuro patches as well.ill let you know how the thiamine trial goes,the best one you are taking is the madopar.regards.
My first Neurologist put me on meds immediately which I decided to study more before taking. I found a Neurologist-Motion Disorder Specialist for a second opinion and told her I wasn't comfortable taking meds at that time and she agreed to monitor symptoms and left it up to me when to start. My right hand didn't function well and of course I'm right handed and after 2 years she told me I should try a minimum dosage to help me because I run a business and writing along with other things was getting very difficult. It was October and I'll never forget, she said wouldn't you like to carve the turkey Thanksgiving Day ? I still get emotional when remembering that day, I felt broken but agreed and knew she was just helping me feel like me again. 3 years later I'm still on a small dosage, I do everything from 5am until 9am with no medication, exercise, shower, dishes, cleaning ,driving etc. Sure I struggle a little but I feel I don't need meds until I get to work and this surprises my doctor and she is very positive and supports me 100%. I share all of this because I know we're all different and all the information I've read tells me the medication will last so many years and I'm hoping to stretch it out so the meds will work until I hit 100. I also know for a fact after my diagnosis that some doctors want us on meds right away and others help us make better decisions without pill pushing. I hope you find something of use from my long reply !
Everyone's PD is different. What helps me may not help you. Are you seeing a movement specialist? If you are and you're not feeling well, You must tell them. There are other meds on the market that may help (especially with the off periods, however to many meds may resemble an off period). If you're not seeing a movement specialist, try to find one. Maybe your cocktail of meds needs adjustment. unfortunately there is no holistic healing, except for exercise.
thanks Ton. the Dr. i am seeing is a movement disorder specialist. i have an appointment with my PD nurse mid-June and i will use the opportunity to review my medication.
Only a neurologist can answer that question. As neurologists are often locked into the belief that there is nothing that can be done to stop the progression of Pd, and no mediation has yet been designed to do that, then whatever medication you take will not help you. If you are lucky and get some sort of temporary relief and you are happy with that, then that is your choice.
I would personally take myself off all Pd medication, slowly, but surely and start doing some exercise, which CAN HELP YOU OVERCOME MANY OF YOUR PD SYMPTOMS!
Contact me on my website - reverseparkinsons.net - and I will try to help you, free of charge.
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