Hello everyone, and thank you for taking a look at my post.I have had Parkinson's now for nearly 7 years and have over the last year had more difficulties with my medication being effective. I am currently taking a total daily (24hrs) dose of 900mg of Levadopa. I was wondering if this a lot more than other people are taking at this stage in the disease?
I'm aware that everyone is different, and people will be taking different forms of levadopa and agonists but I was just interested in getting some comeback from others on their total daily levadopa (or equivalent) intake, rather than just existing in my own bubble.
Many thanks for your input
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Thank you for your reply No off periods sounds good! That is the main reason I have had to increase my medication because I have long off periods of feeling unwell (almost like permanent very bad flu! Except for the short periods my meds kick in), yet my motor control has always been well controlled. Leaves me wondering if I'm over medicated? Hence wondering what dose others were on.
Sounds like you could be over medicated. There’s a fine line there. I take between 5 - 7 C/L’s a day. I was diagnosed about 20 yrs ago. I’m also taking Amantadine to help my “on” time. Most of the time I feel better when I only take 5 . Sometimes I add a 1/2 pill if I feel like I need it. 🥊
Do you have any side effects from amantadine? Does it effect your driving? I've read it can make you fall asleep uncontrolled?? in the middle of the day. while eating meals ???
It doesn’t make me fall asleep. I actually sleep a little better when I take it . I take 3/day . 5am, noon & 4pm. The only side effect I get is a dry mouth. I haven’t gotten the fly since I’ve been on it. Did you know it was originally developed for the flu? 🥊
I take 8 25/100’s daily plus an extended release 50/200 at bedtime. I am struggling with a lot of pain but my body can’t handle more levodopa as I get dyskinesias and feel like I am on speed. Horrible feeling. I have met with a neurosurgeon about DBS and he said that he believes it will help me but he won’t do the surgery until I put on weight & demonstrate that I am absorbing nutrients, as I have gastro mobility issues. I am praying that somehow I can get to that place as I so want that surgery.
Thanks for the link - interesting. Certainly a very different approach to the one my consultant advocates! I just wonder if there are more negative long term impacts to taking "high" doses of levadopa relatively early on, particularly if, like me, you have early onset Parkinson's.
Salve, sono stato diagnosticato nel mese di Maggio del 2018. Attualmente la mia terapia è la seguente: una pillola al mattino di Xadago 50mg e una pillola/una pillola e mezzo al giorno (100+25/150+25) di Levodopa. Quanto precede contrariamente alle indicazioni del neurologo che spinge per dosi più elevate. Sin dalla diagnosi sono sempre stato conservativo nell’assunzione di Levodopa per timore delle discinesie, grave effetto collaterale di cui il neurologo raramente ti mette al corrente. Potrei stare meglio se usassi più Levodopa, certamente ma preferisco stare “benino” piuttosto che bene. Finché posso naturalmente, perché come dici tu, ognuno ha il suo Parkinson ed evidentemente il mio mi lascia degli spazi di manovra. Ad maiora.
Hi. Thanks for your reply. That's really good that you can take so little levadopa and still feel fine. I currently have to take co-careldopa 25/100 every 2.5 hours throughout the day, plus 2 night doses, and that still gives me significant off periods.
You wrote in your first post in this thread that you have upped your dose to 900 mg LED. Do you still have "significant off periods." If you do, it sometimes works to try increasing just one of your doses, leaving the others unchanged.
Incidently, after 18 years post-diagnosis, I'm on 760 mg LED per day (includes 8 mg ropinirole, 1 mg rasagiline and 5 x 75 mg Stalevo). I've been on this dose for about 7 years, but I'm now in the processs of increasing it.
My symptoms of PD started on 2017, diagnosed on 2021.
I started levodopa on June 2021 with 300 mg p/day.
Now I take 400/450 mg p/day.
I cannot take dopamine agonists.
I do a lot of sports (swimming, running, cycling, walking, yoga, dancing). I travel, I do freediving underwater, I create many things with computer, I read books.....
I eat vegetables, meat, eggs, not much cheese, pasta gluten free, trehalose in rice/almonds milk, blueberries, fava beans, chicory coffee...
Technically I have had early onset symptoms for 7 years as well; however, now that I know what to look for, my right hand would trip up and fatigue while typing and I started getting frozen shoulder when I was 40. I was diagnosed at 48. Long story short, I am currently taking 1,100mg a day. I have nasty off periods and sometimes nasty dyskinesia. I try to take a little less when I suspect that a regular dose will result in dyskinesia. It’s frustrating and I am preparing for DBS. I have found that sometimes I can push my way out of an off period by eating a little bit of candy, such as two or three Hershey’s kisses, followed by some pushups and a few yoga poses. Jumping rope as best as I can, also helps and some big side to side reaches. Basically you push the envelope and make yourself uncomfortable, especially when you are in a public place, then you are physically and socially uncomfortable. Then rest for five minutes. I find that it at least helps take the edge off of the off and I can move a bit better.
Do 2 years my PD had disappeared and I have been free of it since then! Dont' bother with useless medication. I have been there and done that! In 1992 I started to do FAST WALKING, for one hour, every second day and within 2 years I was completeely fre eof PD and have never looked back!
Hi. That's a great result! I do a few hours of sports 4 or 5 times a week, and I'm starting a no sugar diet, which may help, we'll see. Ideally I'd eat keto, but as a veggie with PD, a high protein/fat diet is pretty challenging! I'm also trying to isolate which would be the most effective supplements to take, but not sure yet.
Hi. No, just my badly worded sentence! I'm just trying to look into the bewildering number of supplements to see what's potentially most effective (like everyone with PD is I guess!). For example, those currently on my list to look into: Spermidine, Berberine, Lithium, baicalein...etc
Thanks. for the info. You say you exercise 4 to 5 times a week. I have no trouble with that but, are you aware that PD is caused by a shortage of GDNF in the brain?
The best-known way of producing GDNF, in the brain, is FAST WALKING. So why not concentrate on doing FAST WALKING, for one hour, three times a week? You may only be able to walk as fast as you can for 2 minutes, every second day, but it will slowly build-up to one hour. All the time, you are going to be getting better. It only took me 3 years for all my symptoms to disappear. That was in 1997. I am now 89 years old and am still walking and am still fit and active, But I am aware that because of my age and having other health problems in the past 5 years, my symptoms are slowly coming back, but hell, I have had PD for over 31 years and nobody would ever know I still have PD!
Don’t forget to do some warm-up exercises before you do the FAST WALKING! I was only able to walk fast for about five minutes, at the beginning but, I had done very little exercise all my adult life, and almost no sport. I am a workaholic and deserve to have contracted PD. I had tried gym and other exercises over the first 2 years of being diagnosed with PD but, it did nothing for me! My late wife had started to do the RUN/WALK for LIFE program and while I was progressively getting worse, she was getting fitter. She had never done any exercise before then and she saw herself as likely to soon becoming a widow, because of my PD.
PD restricts movement and I eventually I stopped going to the gym and joined her RUN/WALK for LIFE program and within 3 years, all my PD movement symptoms had disappeared. I was only able to walk fast for less than 5 minutes at the beginning but, slowly, my time and distance walked every second day got longer and faster until, thee-years later I walked in a 10-kilometre walking race, which was open to all adults and I came in the top 10, at the age 65. You may ask ‘If you could not walk before you started WALK for LIFE, how come you were able to do WALK for LIFE? Well, that is easy! Normally we walk, not thinking about what our legs are doing, they are on automatic control. Your subconscious brain controls the walking, but your brain is not working properly now, because of PD! I had learned to CONSCIOUSLY WALK and still do so to this very day. I still concentrate on each step and arm movement! So, WHAT! I have made that last statement the title of my 3rd book, because I have had to learn to consciously control many of my movements.
Forget all the medications, none of which reverses PD and start to reverse your own PD by FAST WALKING! ordinary walking does not produce GDNF in the brain and neither do many other exercises. The fast walking makes your brain think you are in danger and you are running away from that danger and it produces the GDNF to renew damaged brain cells, which might result from that damage!
Hi John. Thanks for taking the time to reply, much appreciated, and I'll definitely start integrating some short fast walks into my week to see how I do.
Please don't do too much exercise. Ideally, we sjjhould not do streuous exercise every day. We must give our muscles time to recover from strenuaous exercise!
Hi. Yes! It stopped my tremors and it enabled me to walk as fast as possible! I was able to walk at more than seven kilometres an hour within three years of starting the walking.
That! Obviously is too much, but I would guess that you stroll rather than do FAST WALKING? If you are fast walking then you are not doing yourself any good.
Hi John. I first had contact with you about 8 months ago and I have been increasing the speed and time on the fast walking. Started at 4kph and 15 min ,now up to 6kph and 30 minutes though I've been inconsistent. My tremors are actually worse when I'm walking fast and after I finish. I'm taking 6 125 mg tablets c/l dopa a day. Any comments or suggestions - thanks. John Quinn
My experience with exercise is the same - for reasons I don't understand, my whole body tremor is worse after I finish. If I lie down and close my eyes the tremor subsides. I'm taking 7 × 100/25 Madopar capsules a day.Any comments will be appreciated.
"It is common for people with PD to feel worse immediately after exercise, having more tremor and slowness – this is normal! It is not a sign that you are exercising too much, rather, it is due to the temporary exhaustion of your dopamine, and will return to normal after some time has passed. If it bothers you, you could ask your prescribing physician if you can try taking an extra dose of medication right before exertion." - from parkinsonsblog.stanford.edu...
Hi I am 6 1/2 yrs along and I was taking 4 x 100 up until July. Doctors just seem to want to keep increasing the meds but they affect my gut badly. I have changed to mucana puriens which is a natural levadopa and I find it works much better.
I take a quarter of a kinson 4 times a day with mucana and I feel soooo much better. The mucana works quicker in about 20 mins and off times aren’t as severe.
My neurologist laughed and didn’t think it would work but I stuck to my guns and I feel sooooo much better.
I get them online from Piping Rock.
It’s called Dopa Mucana & two 350g capsules are the same as 1 x 100/25 PD med.
I am taking 2 25/100 ,tablets 5 times a day but not feeling well during most of the day. I am also using a 5mg Neupro patch which is a dopamine agonist which has done nothing for the general weakness. If I added Mucana, would I substitute my regular Sinemet with Mucana or add it in addition to what I'm taking.
Wow Gigi 2 x 25/100 5 times a day is a high dose!!!! I tried Neupro patch too but didnt suit me.
I suggest you dont change to Mucana all at once but gradually swap it over. Perhaps start with 2 mucana & 1 Sinemet once or twice a day and keep 3 sinemet the other times and do that for a few days. Gradually do the change and gauge how you feel.
I will be interested to hear how you go. After 5 years of feeling very unwell, since I have changed to mucana I feel so much better and have periods of almost feeling normal.
I get Mucana Purien called DOPA MUCANA online from Piping Rock and they are 350mg. Two Mucana are equivalent to one 100/25 Sinemet of Madopar.
Thank you so much for the help but I'm not sure what you are saying about switching . Are you saying to substitute 2 Mucana and 1 Sinemet for my 2 Sinemet once a day and gradually substitute all my 5 doses like this?
I have been reading more about Mucana and the article said studies had shown it to be faster acting and beneficial when used short term but not long term and often caused digestion problems. Has anyone experienced that?
I have been reading more about Mucana and the article said studies had shown it to be faster acting and beneficial when used short term but not long term and often caused digestion problems. Has anyone experienced that?
I am 4 years post diagnosis and taking LD 100mg at 8am , 1pm and 6pm. Off periods between doses have been increasing and I was going to discuss upping my LD at my next appointment with the consultant. Then I began intermittent fasting and the increased effectiveness of my meds was almost instantaneous and pretty miraculous. I take my meds as normal but do not eat until after noon. I stop eating at 8pm and have nothing (not even milk in tea) for 16 hours. I am off when I wake up but after my first dose at 8am I now have no off periods at all for the rest of the day.
I have been doing this for over a month now and it is working well. Food clearly has a massive impact on the effectiveness of LD. So watch what you eat and when. Intermittent fasting seems to be working brilliantly for me. If you can, I would urge you to give it a try before increasing medication.
I’m still tweaking it. So far the best regime seems to be fruit nuts and yoghurt at 12 , lunch at 2.30ish and dinner at 7pm. I miss my 1pm and 6pm doses by at least an hour. It’s amazing how much you can eat in 8 hours!
I'm in my 8th year, and food interferes big time. I take meds on a similar schedule, higher doses. Breakfast around 10-11, I eat almond yogurt, puffed amaranth, a bunch of berries a bit of other fruit, mct oil (keeps fruit from spiking glucose), Ceylon cinnamon. Sometimes a plate of veggies instead.
Lunch around 3 plate full of veggies, with olive oil, and 1/2 avocado, sauerkraut and kimchi.
Dinner around 7-8, protein, veggies and chia pudding for desert.
7.5 years post diagnosed, but symptoms for 10 years. Was taking 300mg until 6 months ago then that increased to 450mg about 4 months ago. Suffered a bit of an overnight worsening and now take 600-700. Off time pain and general discomfort can be horrible but I am more mobile now , so I was probably under medicated before and have caught up to where I should have been.
Hi everyone. Thank for all your replies, it's much appreciated.It's really striking just how varied different people's experiences are.I do still get multiple painful/feeling ill/dystonia/some tremor 'off' periods a day, but I'm reluctant to increase my dosage from 900mg. A couple of months ago I was taking around 1100mg (Stalevo + sinemet) a day, but was experiencing severe off symptoms 2 or 3 times a day. I believe part (most?) of those were LD withdrawal symptoms, so I have reduced my meds to 900mg sinemet/day, which has made the offs less severe. I'm tempted to reduce my meds again to try and find out how much of my 'off' symptoms are actually LD withdrawal, rather than underlying Parkinson's symptoms. It's very hard to tell. I'm not sure if anyone else has had experience with this?
Thanks for the Mucana, and intermittent fasting suggestions, I'll certainly look into those.
Apologies, I have probably misunderstood you but are you saying that you were experiencing withdrawal symptoms from levodopa before you have actually reduced your daily dose of levodopa?
Yes... possibly. My consultant suggested that the sudden and very deep offs I was increasingly experiencing in the last 6 months were partly due to me being use to too high a level of dopamine ie. Overmedicated, as opposed to my PD symptoms showing due to low meds. But as well as reducing my meds, I've also come off Stalevo and on to sinemet recently to see if that helps, so maybe this has been the factor in helping. It's so hard to tell, but the amount of levodopa I was taking had increased from around 800 to 1100mg in about 9 months. So I'm open to the idea of reducing my meds.
I understand now. I too was on 1100 mg per 24 h. The problem with me is that I have not yet found a dose of levodopa that works for me, and I have been on 550 to 1100 and now down to 900 mg.My Neurologist told me that it is a common misconception that there's addiction (and hence withdrawal) to levodopa. However, despite levodopa not helping at all with my symptoms and actually exacerbating them, I still cannot miss a dose or increase the time interval between individual doses. So I'm finding it very difficult to further reduce my levodopa intake. This to me sounds like addiction.
Yes, I guess it's about trying to find a "sweet spot" somewhere between dopamine disregulation, and uncontrolled PD symptoms. But it feels like there is no sweet spot unless you're lucky, it's more about finding what's tolerable one way or another, and being prepared to experiment. It's definitely not an easy road!
I have had a similar experience. If I take the full dose of Rytary that was prescribed, it's like I'm high or speeding for a few hours then drop off a cliff! Dopamine converts to noradrenaline, so you can get the freeze/sluggish/ or other symptoms along with high anxiety! Not fun.I also reduced the prescribed dose, which leaves me with some off periods, but they are manageable.
So I wouldn't call this withdrawal, exactly. I also am getting more foot cramping and thigh tightness when meds are low. But unless meds are low enough to have symptoms, I can't fall asleep! I do take 1 1/2 CR sinemet at bedtime.
Hi. It's interesting to hear this. This is very similar to me. I felt like my doses were making me feel very 'on' which is great for being active. But the offs were increasingly getting really (like really!) bad. This is why I called it potential "withdrawal" symptoms during these off periods, because I wonder how much of the feeling terrible was my body craving LD as opposed to the PD symptoms showing. Certainly on the lower dose the offs are not as bad, although they're certainly still there a few times a day, so there's still work to be done.
It is normal Modopar. I have had no experience with Stalevo or Snemet. I did make a trial with Mucuna Pruriens instead of Modopar ( with same L-Dopa content) and I could not find any real difference. NB : my neurologist seems to know only Modopar ...
Dx 6 years ago. I take 6 C/L pills per day. I have 15min to 30 min off periods. I used to have to no on periods until I was treated for H-pylori. Now I can absorb the medication
I’m 7yrs in and currently I’m taking 18x Rytary 195mg every 24hrs(3510mg). I recently had DBS(gpi) and although my symptoms all but went away for 10 weeks after switching it on I am unfortunately regressing back to partial pre surgery symptoms. I never had a tremor but did suffer with bad dyskinesia and upper torso dystonia which affected my ability to walk normally.
I’m recently experiencing the waring off again. although my dyskinesia hasn’t returned I was taking 15x195mg Rytary plus 4x 0.25mg mirapex. My MD recommended slowly reducing the mirapex and I’m off it now but am not sure if this has caused the regression. Currently experimenting with adding a few extra doses of Rytary and so far so good.
certainly seems like I’m taking a lot of C/L compared to others ! Frustrating journey for sure!
Levodopa medication depletes vitamin B6. Those taking high doses are at the highest risk. So you will probably want to supplement your vitamin B6. See here for details: healthunlocked.com/cure-par...
So many variations on dosages. Depends on the symptoms I presume and whether rigid dominant vs tremor dominant. I'm rigid dominant PD, diagnosed in 2021, I am now on 950 mg of c/L. Started in 2021 at 600 mg c/L, increased in 2022 to 800 mg c/L, and now up to 950 c/L.
Rigid dominant (no obvious tremors) I have read can carry more disability and cognitive dysfunction than a tremor dominant form of PD. Due to the different areas of the the brain impacted. From what I've seen on youtube videos and read, the Putamen is more impacted in rigid dominant Parkinson's (it's closer to the cerebral cortex) and in Tremor dominant it appears the Globus Palidus is more impacted.
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