Taking C/L on demand vs regularly

[stlewy]

I was diagnosed earlier this year, but probably had PD for 3-4 years. My doctor prescribed me a low dose of C/L to take 3 times a day for my PD symptoms. I have asked my doctor if it is OK to just take it when I need to go to the office/give a presentation to control my symptoms (primarily for tremors). Approximately once or twice a week at most (sometimes no medication for a couple of weeks). He said yes it is OK. I do exercise daily and it helps with many PD symptoms, but not much on the tremors. I wanted people's thoughts on the "nonregular" use of C/L (people exercising but facing the public with tremors). I do believe in attempting to solve medical problems without medication. I am hoping to hear people's real experiences.

[pdpatient]

Based on my experience, either way is okay depending on what works for yo.

I have tried both and after 12 years with the disease I have been through several phases of one or the other. It's not long before you can tell whether you're not going to need the next dose and can delay it. However it is not an exact science and you just have to adjust your next dose.

Unfortunately, there is no testing or feedback mechanism like the ones that are available for diabetes such as Continuous Glucose Monitors.

The early stages of Parkinson's is more adaptable and forgiving, so don't fret about it but don't expect it to be the norm 😊😭

[stlewy in reply to pdpatient]

Thanks pdpatient. My concern with C/L is my body getting immune to C/L where the medicine may not be as productive. I've read posts where the medication doesn't work for some people as they keep taking it over the years. I was wondering if much less usage helps prevent the body from immunity to C/L? As you stated, based on individual responses to C/L. Wanted to hear testimonials from the users that take C/L infrequently (1 pill once or twice a week) and use exercise to help control other PD symptoms.

[PixelPaul in reply to stlewy]

I think your concerns about becoming immune to C/L have been largely debunked. The decreasing effectiveness of C/L over time is more a result of the disease progression. If you need the C/L for symptom relief today, take it. There is no benefit to saving it for later.

[pdpatient in reply to PixelPaul]

💯 agree

[Jefferami in reply to PixelPaul]

Absolutely agree. I've done a lot of research on the subject as I'm relatively recently diagnosed and when it comes to C/L dont hold back from the meds if you need them. I take a regularly 6am dose then the rest of the day completely on demand and seems to be working fine for me with plenty of exercise.

[TeamPG in reply to PixelPaul]

Debunked where and by who? Do you have any sources to cite?

[Gioc in reply to TeamPG]

academic.oup.com/brain/arti...

Here, but don't trust it 100%, IIn every medicine there is always something toxic that accumulates. Risks/benefits.

[stlewy in reply to Gioc]

Thanks, Gioc for that very informative article and sounds plausible. My concern is what happened to me when the lowest dose prescribed by the doctor was too much. Most likely, the doctor was following standard protocol. I was getting dyskinesia on the first day of taking the medication. It took me a while to figure out too much medication. Also, when I exercise, the same dosage would cause my dyskinesia to be worse. I even had one case of dystonia which scared me. Exercising and taking a few pills a week (3 or less at 50 mg C/L per week) seems optimum for my body and daily routine. My dyskinesia and dystonia went away as well as other symptoms such as stiffness. Tremors were not 100% hidden but controlled enough where it was minimal. I am considering the MRI non-invasive treatment for tremors which candidates that I know are reporting 100% tremor-free. Exercising and vibration therapy are my goals. The day when I'm not getting enough relief, I will probably induce or increase the medication to a value that works for my body and weekly routine.

[Gioc in reply to stlewy]

Hi stlewy

Did you inform your neurologist about this situation and what did he say?

if I may ask.

Greetings from Italy.

Pusiano lake

[stlewy in reply to Gioc]

I did tell my doctor (many times with doctor's assistance). They must have thought I was crazy calling them a lot and telling them about new symptoms which I thought was PD, but instead reaction to medication. I switched to a new doctor. He told me that I should have started for 1/2 pill first, and see how it worked.

[Gioc in reply to stlewy]

as far as I know the response to ldopa should be one of the parts of the diagnosis, but I'm not a doctor.

In my case I started with about 100 mg ldopa ( Madopar )every four hours three times a day and after about three months I was visited again to evaluate the response to the medicine on the symptoms. I had already had a negative brain MRI and a positive Dat Scan for PD

ncbi.nlm.nih.gov/projects/g...

[Gymsack]

Pixelpaul and PD Patient are correct

I am basically taking the CD/LD on demand when I need it , thing is I am taking it every 3 hours and it lasts less than 3 hours (varies depending on many things) kind of the opposite to you.

You will find ways of identifying when you should take one. The only person who knows when and how much is you. Yes as the years went by I had to take more and more to stay reasonably stable as the PD increased and it still works I just dont make any of my own dopamine any more. Two things you should know.

1/ No matter what medication or how much you take , there will always be a little bit of PD left, later there will be more , get used to it and know that taking more medication will not clean the body of PD completely.

2/ Know that if you let the dosage slide too much and you become under medicated you may find that you can not exercise as much and that could have an effect on your future.

Be happy

[stlewy in reply to Gymsack]

Gymsack, I've missed your post earlier. Great info to all of us. So true. It is a degenerative disease. We all hope as the doctors say: exercise to slow the disease. It's good to hear more PD veteran's experiences. In the end, whether we know it or not, we are all striving for survival. For many non-PD people, it is about looking young, having Botex, and surgery to look good. For us Parkers, it is about relieving the symptoms. A cliche: there is no true cure for baldness, but you can hide it: wigs, toupees, hair club for men, Bosley. Likewise with PD: no cure, but we strive to hide the symptoms: exercise, medication, vibration therapy, MRI guided focus ultra-sound, B therapy....

[CuriousMe12]

No one really knows the long term effects of hitting your brain with chemical meds, or not. Especially, early stage plenty people vary their dose frequency or timing.

My opinion is whether naturally produced, or via meds, as long as you have enough dopamine in you to support your activities safely then try what you think.

Many people exercise with no or reduced meds, especially early stage.

You know best your own body, lifestyle and needs.

[stlewy in reply to CuriousMe12]

Good point and I like the exercise info. I've been diagnosed as pre-diabetic about 20 years ago. My doctor told me because I'm exercising and dieting, it is controlling the levels to safe ranges, and didn't need to take diabetes medicine. 20 years later, it is coming to the point that exercising/dieting is not enough, and taking a low dose of diabetes meds is needed. Your PD meds info is similar. Thank you

[Graciedog123 in reply to stlewy]

I don't know what diabetes medication your dr. has you on, but, if it is metformin, that may help your PD too. There is a website called pubmed that has a millions of articles. You can simply search "Parkinsons Disease and Metformin" and read the data. Like you, I also take C/L only as needed, it works out to be 1-2 times a week or even off completely 2-3 weeks. Anytime I can avoid taking medication that is not necessarily beneficial by the time you weigh the pros and cons I do. I am also concerned about becoming "immune" to C/L. AND also the side effects of C/L. I see my friends on C/L and they seem to be for lack of a better descriptions, "out in the ozone". There just isn't anything out there for PD and to me EXERCISE is the "gold standard", not C/L. I hope this is helpful.

[stlewy in reply to Graciedog123]

Hi Graciedog123. Good Info! The diabetic medication is Metformin (lowest dose). About 8 days now taking Metformin, and the heavy feeling in my legs has vanished for the most part. I must give exercising some credit as well as I have been exercising daily with some routine of jogging/speed walking/sprint mix. I generally feel great after exercising sometimes for two days. The tremors; however, get worse during exercising and 30 minutes after (especially after heavy sweating/dehydration). 30 minutes after exercising and hydration (food as well), I feel great everywhere.

[Edge999]

im only 1.5 years in at age 45 but madopar does very little for my tremor and sleep which are my primary issues. Diet helps alot as does propranolol.

[Parkie1]

I tried going without meds, desperately looking for alternatives, but have come to the conclusion that I need the meds to live ' normally' to some degree. I struggled for years knowing that I had PD before diagnosis, because I'd observed family and friends with it. Eventually I submitted to Co beneldopa and got some of my life back. I think it's wise to go slowly with the meds, but give yourself enough to function. You'll find your own level. Keep up the exercise and things that bring you joy in life. I've also found this forum to be a great help and encouragement. In turn You'll be doing the same for others.

[Windermere1]

research the Parkinson’s b1 therapy and join their fb group and read daphne Bryan’s book off Amazon. It works for me

[Nicopwp]

Yes! Great question and why is 100mg the std dosage? A 120 lb person gets the same as a 180lb person? The 100 mg pills are hard to cut and there are no smaller pills available in my world.

the possibilities for customizing our protocols could be vastly expanded employing these two concepts;Timing and dosage.

[space44]

i do both. Stalevo 150/50/200 every 4 hours or anything over that during the night and symmetrel 100 twice a day. If i am meeting someone new or going to the dentist and feeling anxious i use madopar rapid 62.5 as a top-up. I can go weeks without the madopar and sometimes twice a day.