"The most important factor in initiating medications for an individual patient is whether Parkinson’s symptoms are affecting quality of life, (read; interfering with...) or alternatively whether symptoms are affecting work performance."
You must be aware that when people say there is "no reason to delay Sinemet therapy", people mean that sinemet won't bring forward motor complications or otherwise advance the disease, not that you should start sinemet before you need it for symptomatic relief?
Its pretty obvious you don't need symptomatic relief drugs before you have symptoms that impact your QOL.
I would say that the primary reason people take CL from dx is that by the time they are dx, they are already experiencing symptoms that impact their QOL, i.e the symptoms that pushed them to see a neurologist in the first place.
No kenwpd, you are completely out of the way about how PD diagnoses occur, but I understand you have no experience. PD has motor and no-motor symptoms and the latter come first and are little affected by the use of Levodopa.
Very often the diagnosis of PD comes after an ordeal of visits to other specialists, but how did your diagnosis go?
😁
Hi Marc:
I can't recall anybody ever taking the position that 'meds should be taken automatically at the time of diagnosis'.
And the position 'there is no reason to delay Sinemet therapy' is not saying that 'meds should be automatically at the time of diagnosis'. It is saying take meds when they can help (not sooner, not later)...
Kevowpd, I agree with your comment, but I'm not offering commentary on that. But, since you raise it, there is a reason the 2nd cohort is much larger. I think most people have a built in resistance to pharmaceuticals - and I think that is smart. Too many doctors are too quick too prescribe IMHO.
There are a lot of comments on here from people who were prescribed C/L at the time of diagnosis, automatically, and I do question that - and that is all I'm questioning.
Yes, because they have PD symptoms that need treatment. Which is why they wound up in a neurologist's office. You have no way of knowing that any of those prescriptions were 'automatic' in that they weren't warranted by symptoms.
Otherwise, I can't be bothered. You have set up a straw man to argue against.
"I think that most people have a built in resistance to pharmaceuticals"
I don't think it is built in resistance to pharmaceuticals that is the problem... i think the resistance happens in cases where the pharma drugs have a reputation for inducing very awful side effects
I'm neither kevowpd or Levod. I agree with their comments that "don't delay ldopa therapy" means "starting ldopa therapy won't bring forward motor complications or otherwise advance the disease"
I am 3 years post diagnosis and my only ldopa therapy presently is self administered macuna. 18 months post diagnosis I was prescribed Pramipexole because tremor and bradykenesia were interfering with my computer keyboard use - and my job needs me to use a keyboard.
My Dad and Father in law were prescribed Sinemet on diagnosis. They were both 80 or older on diagnosis. My Dad had a tremor, serious rigidity, festination and freezing - he was a good 3-5 years more progressed at his diagnosis than I was. My father in law likewise (although not freezing)
"I agree with their comments that "don't delay ldopa therapy" means "starting ldopa therapy won't bring forward motor complications or otherwise advance the disease" "
I'm NOT going to attempt to put words into your mouth... but the implication of what you said is that 'you will have PD less worse if you don't delay ldopa'.
If you plot on a graph- pd progression with delayed ldopa vs pd progression with immediate ldopa... the implications of this graph (according to what you said) is that ldopa slows down progression
No. Ldopa definitely doesn't slow progression. It improves quality of life (for many, not all).Jimcaster would be a good example of somebody who delayed Ldopa and as a consequence missed a year or two of better quality of life that he can never get back
Iwas dx with a sticky finger so held off c/l for a while. My neuro prescribed immediately for me without even telling me anything bout PD apart from to researc it on line. My view is become knowledghable n then commit.
My mum was 80 when diagnosed with Parkinson's - she had a stiff arm and walked in smaller steps, no tremor, no falls - she can still knit, etc. The diagnosis went between PD and Alzheimer's, and landed finally on PD. She got prescribed Levodopa/Carbidopa right away, and has felt awful ever since. She's lost all quality of life, also because of her severe anxiety and panic attacks. She takes all that the doctor orders, on the minute, otherwise she freaks out. Now she has tremors, both before and after medication, seems related to the cycle she takes her medication as they seem to have started when going on medication. But maybe she would have developed tremors anyway because of the timelapse and probable development of her condition (she was diagnosed around 3-4 years ago)? It is really difficult to know how best to help her, she is really frightened most of the time.
It’s very tough to convince an older person who will only follow a doctor’s orders that there might be a benefit otherwise. Maybe she could ask her doctor if she can reduce her dose or vary the schedule to see if it might make a difference?
Your poor mom. I take Lexapro 10 mg a day for the anxiety and depression and it seems to help quite a bit. Perhaps her doctor could come up with something that would help her. That's such a crummy symptom to deal with. Doctors tend to want to treat what they can see but quite often the symptoms we suffer most with are the symptoms that are not noticeable to other people.
I was diagnosed with a lessened arm swing and an Intermittent and very slight right arm tremor. After I got the diagnosis the anxiety was overwhelming and the tremor went from a 1 to a 10 in days. The neurologist really heavily encouraged me to start sinemet telling me that my anxiety issues were likely dopamine related and the sertraline I started wouldn’t help. This was all before I found this forum almost 2 years ago. Fast track- I feel almost back to my old self before I knew I had pd. I am taking a handful of supplements as most of you too. I asked my neurologist at my last telehealth appt ( which is how she has seen me over the last year and a half) if I could start taking half tabs (currently taking 1 sinemet 25/100 3xaday) and see how i do now that I am stable, and she said that could play havoc on my brain and she wouldn’t recommend it. Now that I have been on c/l for this long, could anyone with experience tell me their opinion on whether I could or should try and titrate down. Thanks in advance
Just to verify, the Sinemet did help with the anxiety? A non-motor symptom. Three 25/100 tablets is a pretty low dose, if you are stable and feel good why do you want to reduce?
I will never know if time or the meds helped with the anxiety. I discontinued the sertraline when I started the sinemet so I always wonder whether time helped decrease the anxiety and tremor or did the sinemet do both.
My advice, FWIW, would be to hold steady where you are and enjoy the “normality “ for as long as it lasts. You can always experiment in the future when it comes time to increase your dose.
Missy, my doctor doesn’t like me to do that either. It seems to be that the stable dose is the way to go. But it is frustrating at times at least for me because I also get some dyskinesia which makes me want to take fewer pills. But when I try I end up taking a higher dose and a lower dose on the same day which is not good at all apparently. So if you function well on your current dose and don’t have any side effects it might be worth it just to stay on that. Safer too possibly.
You said: "... the popular position, 'there is no reason to delay Sinemet therapy'."
Do you mean that you perceive it to be a popular position among members of this forum, or among neurologists?
I've never noticed that to be a popular position within the forum (i.e. starting Sinemet at the time of diagnosis, regardless of the severity of symptoms).
My husband had manageable symptoms but went to the Neurologist to find out what was causing them and to get a diagnosis. The Neuro then prescribed Madopar straight away to see if they helped. my husband felt they did not really make too much difference so dose got upped and he started them about 5 years ago. The thing is if you have little experience with PD it’s difficult to know what to do for the best, whether to take meds or not.
He changed Neuro and he had slightly different ideas about meds and added in Rasagaline as my husband did not want to keep upping the dose of Madopar.
Finding out about HU has helped enormously with trying other supplements or alternative things that may help.
We overexcited New Englanders often envy the more balanced and calm approach of many MidWesterners. Marc Andersen is an excellent example of that balanced attitude.
In 1989, I edited a newsletter for the director of Lown Cardiovascular Center, which had been founded by Bernard Lown, winner of the Nobel Peace Prize for Physicians Against Nuclear War. He also invented cardio version which is still used today to stop atrial fibrillation. The Lown organization is dedicated to the idea that 1/2 of all bypass surgery and 1/2 of all angioplasty performed in the U.S. is unneccary. They also believe that we over medicate the elderly, which they call poly pharmacy. Ironically, the director the organization, Tom Graboys died of Lewi-body syndrome.
My neurologist used sinemet in the beginning to diagnose. If it lessened the symptoms which was mainly dragging foot, which it did, then I had PD. That was 6 years ago. Didn’t make sense but the years since have proven to be true.
Personally, I think the best advice is to take the minimum amount of levodopa that brings you a quality of life that you are happy with. Simple as that
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