Long term Levodopa use

[Sherman Paskett]

I’ve been on it for 11+ years. Dyskenisia showed up about 3 years ago. Last year we started trading off time against time with dyskenisia. By that I mean my dose is titrated so that I spend about as much time in tremor as I do in dyskinesia, currently about 3 hours a day for each. Dyskinesia is easier for me to tolerate than tremor, but both can bring an end to anything I try to do until the meds either wear off a bit or kick in.

My first med was Mirapex — that junk turned my world upside down. It nearly got me fired. I couldn’t sleep at night, I couldn’t stay awake at work. After a year of that I went to C/L and would do the same again.

Response to these meds varies. The doc had me try a couple other meds that were ineffective, but they might do wonders for other people. You never know. If you are worried about dyskinesia I would suggest you consider how much time you have left. That is a hard thing to contemplate, but if you are close enough to end of life you have nothing to worry about; start the C/L and enjoy life. If you are under 50 you have a much more difficult question to ponder. Best wishes on your journey.

[Ron B]

I’ll be 56 in a month.  So far, my main symptom is left hand and forearm tremor.  Although I am  also getting numbness in my left foot lately.  I have weird twitches throughout my body, which are worse at night.  My neurologist suggested I not go on Levodopa yet since my symptoms are relatively mild.  In the meantime, I have been doing bi-weekly IV infusions of B1 / glutathione and I also did 20 IV treatments of NAD+.  In addition, I take a lot of neuro protective supplements.  NAC/Glycine, PEA, Luteolin, ALCAR, Coffee Fruit Extract, Acai Berry, Bacopa, Resveratrol, etc.

So I will likely hold off on Levodopa until my symptoms get worse or new symptoms are added.

 

[Ruth Geiser]

Hi Ron
I  was diagnosed at the age of 27 and now I am 66 which makes it 39 years that I have been taking L dopa. It still works. Not as it used to but without I would not be able to cope.

I take very  little every 2 and a half hours .$

you shouldn’t worry too much. Enjoy the time that you are given!

 

ruth

[John Martin]

I was diagnosed with PD in 2007 so it’s been 13 years. I’ve been on Levodopa for 11 of those 13 years. For me, this drug has been very successful. I have very few side effects and Levodopa (Rytary – like Senemet extended release) works almost as well now as It did when I started using it. To those who feel that it’s not as effective now as it used to be, I would say Levodopa  is probably working as well as it ever has but your Parkinson’s is getting worse making it appear as if the Levodopa is not as effective as it used to be.

[Ron B]

Thank you John.  It’s good to hear about your long term success with C/L.  Are you taking any amino acids to compensate for the Levodopa induced depletion of Tyrosine and Cysteine?  Is there anything else that has contributed to your success?

 

[Jon Busch]

Hi Ron –

Thank you for asking that question. I have at various times taken Taurine, You caused me to look at hat might have made a difference. The answer is Astaxanthin. I stopped taking it about the time my symptoms rather suddenly increased. Coincidence? Maybe but I’ve [ut it back in my supplement regimen. It’s appeal is that it seems to address many PD symptoms without mention of PD. It’s cheap so why not.

[Kurt H]

Have you discussed DBS with your doctor? It allowed me to reduce medication to 1/2 pill per day. Pushes out the side effects of levodopa well into the future.

[Ron B]

That’s really good to know … thank you.  I will keep DBS in mind for future reference.  Did you have to pay for the surgery, or do you live in a country with a national health plan?

[Jon Busch]

Yes, I’ve been on Levodopa (25/100) three times daily for 13 years and have only noticed progression of symptoms in the last six months. I’ve also been on generic Azilect (out of India) for nearly half that time. I suspect after all that time progression was inevitable rather than wearing off of levodopa.

[Hugh McCrackin]

Hi, I noticed that, like myself, you are making the assumption that using Levodopa causes the eventual decrease in effectiveness. I am not an expert but I would suggest you ask your doctor. I have seen some research that suggests the loss of dopamine neurons both reduces the production of dopamine and the ability to process dopamine. If this is the case then the reduced ability to process externally supplied dopamine would happen whether or not you took the meds. Then options like DBS become more appealing.
My point is just to be careful that you don’t under medicate for no benefit.

[Ron B]

I requested a nuerotransmitter test which oddly showed my Dopamine and Seratonin levels are normal, however my Dopac is highly elevated.  Dopac is a dopamine metabolite which indicates an inhibition of dopamine beta hydroxylase.  I am guessing this happens in early PD.  I used to work for an aerospace company where we used the chemical Trichloroethylene, so this is my likely culprit.

[Mike P.]

Hello Ron B, I’m 72, first tremors were 6 yrs ago. I started C/L 3 months ago. It’s the only PD med I’ve taken. I talked to 2 neurologists about holding off, neither were really much help. It’s a very personal decision and I would never give advice. Advice is worth what you pay for it, right? I’m retired and my days are not busy. For me, this summer it got tough for me to do the normal things around the house. I have a friend my age who also has PD and we both agree the C/L only knocks the tremors about in half. Hope that helps. Regards, Mike P.

[Ron B]

Hi Mike, You went 5+ years without meds?  Did you take any other supplements? Do you have tremor in both hands/arms?

[Mike P.]

Yes, 5 yrs. Whether or not it was the right thing to do I’m not sure. Doc says I have typical tremor-dominant PD. Started in one hand and gradually went to other side and then the face. Other symptoms too, all the typical ones you read about. I’ve always been a vitamin user and still am, no PD vitamins really although I’m thinking about trying the B1 regime you see on YouTube.

[ROBERT SUTCLIFFE]

I see elements of truth in each of these responses. The point is,  everyone juggles c/l to get the best results. In my case: I’m 75, diagnosed 8.5 years ago. Started struggling with c/l effectiveness about four years ago. Tremors vs dyskinesia. I work my ass off in the gym and yoga studio 5 or 6 days per week.  Very rigorous interval training, Rock Steady Boxing, and yoga 3 or 4 times per week. I mention this because, if you aren’t doing rigorous pulse raising exercise, (did I use the word rigorous here?) you are missing a major factor in the effectiveness of your meds and to slow down the progression of your symptoms.  Almost 18 months ago, I had DBS surgery on the right side of my brain. Things are advancing, so in about a year, I’ll have the left side done. Having said all this, you probably are thinking that I’m in bad shape. Quite the contrary. My neurologist concluded , after the battery of physical and psychological testing for DBS, that my biological age is 65. Friends say that on many days, they can’t tell that I have Parkinson’s. Of course, that’s based only on what they can see. But, all in all, I can do more than most 75 year olds, which is my goal., to be able to do anything that I would have been able to do without the disease. I road my bicycle 14 miles with friends last Friday. I have a new goal. I climbed the 35 foot rock wall at my gym to celebrate my 70th birthday. I wanted to do that again for my 75th, but I started too late.  So, I’m going to scale it before my 76th. As I occasionally say to myself while boxing, f$@k Parkinson’s.

[Gregg I Daniels]

Robert, You are definitely on the right track with the exercise routines.  I am 72 and have had PD for 11 years.  The main symptom has always been a right hand tremor.  I started taking C/L about 2 years after getting the disease and gradually increased it to 6 per day before getting DBS in 2020. Now I take 1/2 to 1 C/L per day with no problems with dyskinesia.  No noticeable increase in symptoms in the last 2 years. I also take 1 mg per day of Azilect.  I supplement with N-AC, Vitamin D and Vitamin C.  Try to eat a healthy diet with lots of fruits and vegetables ( although I do cheat).  I lift weights combined with interval cardio, ride a mountain bike and a dirt bike. work out on the heavy bag, hike, and ride a fast street motorcycle (used to roadrace and hard to give up the speed rush). Also, try to keep my brain working by taking some pretty difficult online classes from MIT. Basically, I am trying my best to hold this disease off as much as I can.  While hitting the heavy bag I also say to myself, F$@k Parkinson’s!

[George Sharp]

i think that long time use of Levodopa is ok i am sure the docs will find a cure soon.
They will have to because the number of people who have PD is growing at such
a rate pretty soon they will be calling it a pandemic every country is being effected and that will drive the recherché to get a cure. Or is that just a dream i am in my 70s so i have lived a good life but what about the poor buggers in there 50s or younger its time we got a cure , all the best George

[Jo Elmblad]

I was diagnosed with Parkinson’s in 2013. My most obvious symptom at that time was a small tremor in my right hand. I started taking carbidopa/levodopa shortly thereafter….a lighter dose…I think it was half a pill three times a day. Over time the dose increased to a full pill three times a day. Over more time, my neurologist has added pramipaxole. Now I take 1 1/2  carb/levo and one pramapaxole 3 times a day. For me, the medication’s worked pretty well. I’ve really felt like I didn’t have much side effects. Now that it’s been a pretty good length of time, I’m starting to experience the quick jerky movement on rare occasions. Also the medication makes me sleepy. I try to do my Jazzercise exercise class 3 times a week and try to be active and involved and generally can still do all the things I could before….except sometimes a bit more slowly and deliberately. For me, the levodopa seems to have helped me without causing any significant problems so far.

[Troy]

Hi Ron,

Hugh puts it very well. My “it’s so easy, even a caveman can say it” explanation that I usually give others is that eventually, our loss of ability to produce dopamine outpaces the effectiveness of the levodopa.

I have EOPD and started l-dopa before 50 without hesitation. I also am on Mirapex. I’ve included a link to a video from the Fox Foundation which helped to put my and my wife’s fears about long term l-dopa use at ease.

https://youtu.be/QyBGAuhBYzA

 

[Trish K]

Simple answer. Up your dose or dbs.

[Tony de Morée]

Hi Ron,

Talk to your neurologist or ask for a second opinion, if you’re not happy with the first.
To my experience (some 5 years now) worrying about this, would increase my symptoms for sure.
So, get your answers, take the C/L, exercise and enjoy what you still can do!

I wish you well.

[TC]

My partner has been taking Levodopa for about 15 years, which was prescribed a couple of years after diagnosis. Dyskinesias started within five years of taking it. These have been managed somewhat with amantadine but it doesn’t take too long for that drug to become less effective in counteracting the unwanted movements. If you stop taking amantadine for a few weeks, it becomes more efficacious again, but the trouble is, once you’ve been taking amantadine for some years, the effect of not taking it seems quite acute and I can guarantee you that as a carer, I can tell whether amantadine has been stopped or forgotten, because my partner is horribly rigid. So it’s hard to stop it and start it again.

I don’t mean to rain on anybody’s parade, but DBS should not be taken lightly. Please don’t assume it is necessarily the path to replacing, perhaps even partly, L-Dopa. My partner had DBS at one of the world’s leading neurosurgery hospitals a few years ago. It had never worked properly. Far from enabling my partner to cut back on a complex medication scheme, hospital consultants are now suggesting more L-dopa could be taken, despite continuing and acute on/off problems and increasing dyskinesias. OK, my partner is probably deeply unlucky, but to me, it is a little worrying to see DBS suggested as a logical step that will help fix medication problems. There is a strong possibility it will, but this is not always the case, regrettably. We have experienced this sad fact every day. DBS is an option, but success is by no means guaranteed.

I wish you well in your battle with this awful disease. Take good care of yourselves.

[Robert Harris]

Here is what I have experienced over the years. Some, all, or none of these experiences may apply to you if you have Parkinson’s.
1. Neurologists who don’t have many Parkinson’s patients still call CD/L “Simemet” because that was/is the brand name when the med was rolled out. No generic for many years.
2. Neurologists who don’t have many Parkinson’s patients are sometimes hesitant to start and hesitant to increase the CD/L dose. Patients might be started on 12.5 / 50 and leave their patients there for years, fearing that it will gradually stop working. I was diagnosed somewhere around the year 2000. On my journey through seven or eight neurologists, the doctors gradually increased my CD/L to 2175 mg/day. I have taken this dose for about five years.
3. My first or second neurolgist added Mirapex (pramipexole) 2.5 mg /dau and Azilect 1 mg / day. After I’d been on Mirapex for a year or so, it went generic and I continued on pramipexole. However, while researching the drug to find out if I could still eat cheese, I learned that studies showed that there was little benefit to doses over 1 mg / day. So I reduced that.
4. About two or three years ago, I read some research that showed Azilect (rasagilene) didn’t really do very much, and my then current neurolgist said, “Why not drop it?” so I did.
5. My current regimen is 2175 mg / day Rytary and 50 mg / day Ongentys (a COMT inhibitor that doesn’t turn your pee brown.
I’m in generally stable, good shape, with only a relatively new sensitivity to protein. Protein beats up on dopamine, so if I eat an In-N-Out cheesburger (or a double double!) I feel awful for three or four hours. Your mileage may vary, but I wouldn’t be shy about asking for a dose increase if you have significantg Off-Times.

[Grey_Area]

I’m 8 years in. Started on 300mg a day, now at 800mg. Dyskinesia more of a problem now.

Just seen someone’s post that they are on 2175mg daily…wow! My doctors have all refused to offer a number for what the daily maximum should be, but I have seen 800 mentioned in several places. Seeing such a high figure gives me hope.

As to when to start…the REAL question that I asked was “What else could happen to me in the next ten years?”. At 48 when I was diagnosed, I could already feel the impact of the symptoms…the decision therefore was…do I “put up with” a lower quality of life now, hoping for a better one later, or have the best life I have now, and “put up with” a lower quality of life later?

I realised that between “now” and “later” there were quite a few pit traps that would make L-Dopa’s effect almost irrelevant. Arthritis. Dementia. Heart disease. Prostate disease. Cancer. And that’s just the “old guy” disease options…I could be hit by a bus or otherwise injured seriously injured.

So I chose the early start. Even though symptom management now I’m 56 is challenging, I still believe I made the right decision. For me. Your decision is personal, and whilst it is wise to inform your decision making process by asking others for their opinion, no one else can (or, I suspect, ever would) tell you your decision is wrong.