Seeking Advise

[Mischl]

Hello fellow Parkies

I am in dire need for some advise regarding the dosage of my medications.

I am in my 7th year since diagnosed with Parkinson's and I have for most of the time been on Madopar (200mg of levodopa and 50mg of benserazide). I started of with half a tablet 3 x per day, later increased to 4 x per day and several years into it I am now on half tablet 5 x per day (every 3 hours) plus a slow release 125mg Madopar at bed time. On top of that I take half Azilect in the morning after breakfast. I have no idea whether this is considered a normal dose with room for more, or if it is an already relatively high dose of levodopa with not much room to increase the dosage. However, it worked quite ok, means I got around 1.5 hours of quality on-time out of every 3 hours interval. Last week I underwent eye surgery to remove a cataract from both eyes. The surgery went well, though it is obviously a stressful situation as anyone can imagine, including the aftercare with lots of eye drops throughout the day. I am sleeping even less than I usually do and my Madopar seems to have lost potency, so to say. I get max. 1 hour out of the 3 which I would call on-time, and the on-time is not as "quality on"' as it used to be. I did regular exercise before, now I can hardly get my butt moving. My Bradykinesia is extreme, getting dressed is becoming a real challenge and often I need to ask my wife for help. My voice is almost gone and my speech is slurred. I am not so much tremor hit, but my posture is awful and I walk with a shuffling gait like my dad used to when he was in his early 80'is. I am 63 years young btw.

I am poised to increase my dosage again, but not sure how to do. Should I increase the dose to, say 3/4 of a tablet and keep the frequency the same, or should I take the meds more often?

You may advise me to go and see my Neurologist, but here is the problem. I am living in Phuket/Thailand for the past 30 years and my Neurologist is not really a Parkinson's expert. He learns as we go along and often it is me who make suggestions about treatment. The nearest movement disorder specialist is in Bangkok, about 1 hour by plane. Since they don't know me there I wouldn't expect the advise to be too helpful.

Any comment on the dosage of my meds would be highly appreciated.

Cheers

[MellowYellowcup]

I’m early in PD JOURNEY watching this thread closely…

[Grumpy77]

Hello Mischl, since your situation with your neuro is what it is, I'm suggesting you go experimental bcos while there's a lot generality amongst us to some extent, PD meds, and how it affects our progression is also unique to each PwP.

Increase your meds, vary the freq, try various combinations and permutations and see whether your symptoms get better or worse. Even the best of Neuros do this. When you zoom in into the micro details of each PwP, there's hardly any "one size fits all" protocol

And please don't forget other therapies like exercise, good diet, supplements and a cheerful mind

[eschneid]

Mischl,

Many have followed your pattern of decreased on times, myself included being 17 years in.

I would increase the potency first at this point before shortening time in between doses. I take 7-8 doses daily and it brings forgetting issues into the mix --forgetting all those dose times & forgetting if you even took the last dose, believe it or not. There are days my "windows" to get stuff done are too narrow.

Also, a stronger dose more spread out, gives you more options to eat a meal with a better chance of your next dose working out, especially if you've eaten protein.

You have to be comfortable with whatever you decide as you find relief , but don't be afraid to experiment. Let us know how you make out with dosing.

Eric

[Grumpy77 in reply to eschneid]

Good points, yeah with too many doses, forgetfulness and chance to have a meal becomes an issue

[Mischl in reply to Grumpy77]

I already struggle with the meal time's, trying to get it organized with just 3 hours in-between doses. So I don't really want to shorten that.

[Gallowglass in reply to Mischl]

My doctor said it’s ok to eat low protein fruit and low protein green veggies any time.

[Mischl in reply to eschneid]

I started today and added a quarter of a tablet to the dose. So that's now 3/4 of a tablet every 3 hours. I will keep you posted how it works

[eschneid in reply to Mischl]

Thats a good place to start Mischl. It might seem small, a quarter of a pill addition, but it's still a 50% increase. Keep us posted and write down any changes/dates that might affect your symptoms. Examples, new supplement or vitamin, new food, alcohol consumption the night before, anything that is different in your routine.

Eric

[Mischl]

I'm particularly interested to hear about how others dose their levodopa. I want to know where I stand

[Esperanto in reply to Mischl]

It is tempting to compare your medication with that of others, but everyone's experience with PD and medication is different. The reactions to medication can vary greatly, as well as the progression of the disease.

Based on your description, it seems like you are on track and a small increase of a quarter dose may be appropriate. However, it would be wise to first investigate why your current medication is no longer effective. What has changed since then? If you are experiencing insomnia, it can negatively impact the optimal production of dopamine. The same goes for constipation. Maybe you should try to improve that first.

Furthermore, addressing your medication temporarily does not mean that you cannot reduce it later if your condition improves. Personalized medication is so also an option.

By using the graph app from our member johntPM parkinsonsmeasurement.org you can see that your initial medication dose in the morning is likely slightly too low, which may be exacerbated by your poor sleep. So perhaps it would be advisable to start with an additional quarter of Madopar for your first dose.

parkinsonsmeasurement.org/t...

[Mischl in reply to Esperanto]

Insomnia is definitely a big issue for me. And whenever I had a particular bad night my symptoms are becoming worse. Insomnia has been a very big problem since the operation since I'm forced to sleep on my back and I am a side sleeper

[Zella23]

it’s a shame that your Neuro is so far away so you’re unable to add any additional meds into the mix. My HWP after 5 years after dx had a MAOB inhibitor added to his Madopar, so he was able to keep the doses at the same level but they were more effective.

He still moves Madopar doses around now to find what helps him. Too much and he gets dyskinesia. He tried the taking the Madopar more frequently but he kept forgetting to take it and with a lower dose each time, he slowed down.

There are many posts on here about natural supplements have helped with PD symptoms such as B1, it’s a matter or trial and error to find what might be helpful.

[Bunny622023]

Hi Mischl, i think all the posts above are clear and concise. Firstly you need time to get back on even keel. Any surgery is stress, your body needs to recover. Experiment with your doses. You are unique to your situation. My husband is 61 yrs, he has had PD a long time. He is on 14 C/L a day, with no dyskinesias at present, especially when keeping to every 4.5 hrs. V Good on time.

Stress causes all sorts of issues with body, meds etc. as we found out during a major earthquake, total failure of meds. Gait and speech, not tremor, is also my husbands issues. Happy for you to PM me if you need. We also are away from home without our Neuro in proximity. It can be challenging but just means thinking outside the box a little with your wifes help. Cheers JB

[JohnPepper]

I came off my medication when I started to do the FAST WALKING.

It is not normal walking it is walking FAST WHILE CON CENTRATING HARD ON THE WALKING!