Tips on Taking Your Medications

Roy I was saddened to hear of the recent spike in your symptoms and your subsequent ER visit. I sincerely hope that you're feeling better...

I find if I eat any food, particularly protein, but of any kind I fall headfirst far into the Parkinson's pit. As a result I don't eat when I take the Sinemet and vice versa. leads to a lot of unwelcome weight loss

Once again I hope that you're feeling better...

Welcome to the med club. Hope you have good luck with your dose. Keep trying to you get it right what ever right is for you.

i take 15 25/100 Sinemet tablets a day.

Bailey

If you need as faster response (say you forget a dose) you can dissolve a tab in a bit of ginger ale or any kind of soda. The carbonation will speed the absorption.

I see you are starting with sinamet and not the patch. Has it stopped the tremor completely? I picked up the neupro patch from the drugstore but have not started to take it yet. I listened to your comments and I'm planning a trip to the doctor to reevaluate which medications to start with. I hope the Sinamet works out well for you. Let me know.

Has not stopped the tremor completely. I am still on starter dose and before I see my neuro for his advice. The CarbLevo was prescribed by the ER at a very low dose... I am gradually building it up. I sleep better now that my tremors are lessened.

Hi RoyPop, I am returning to my neuro, I may be repeating myself, to reevaluate the Neupro patch prescription that I picked up at my pharmacy and is sitting there untouched. Your advice has influenced my reevaluation. As you know I am a bit older than you, 75, unmedicated 2+ years post diagnosis. Although my tremor is significantly worse I think I can hold out for a bit longer but, judging from your experience, do you think that's wise or should I start meds now? Do you regret waiting to start meds?

A lot of questions but I appreciate your input.

Best

I do not regret waiting. I knew the day would come and it did.

Maybe the "attack" was not going to occur again, transient, or not soon in the future. But I quess it is time. The ER doc initially said he could do nothing as Parkinsons was out of his realm. But out of care he looked up medicine and gave me a minimal dose prescript (1/2 tablet, 25/100 Sinemet) I have been slowly increasing till I reach full tablet, four time / day.

Neupro patch? I will discuss with my Neuro Feb 24th. It is costly but the manufacturer offers discount, So if they do, I will apply.

The warnings, withdrawal and others may be not likely to occur and are simply the necessary factory precaution statements.

The patch would be preferable. It was the neuro's advice three years ago. Will see if that has changed at this time.

Over the three years, my tremor grew worse. Then I awoke one morning to severe (not pain) discomfort and really severe right arm tremor. I had my wife massage my back and arm (it worked in the past) but this time no. I even knelt beside the bed trying to ease the discomfort without success. My wife suggested the ER as it was 3 a.m. I agreed thinking there they could inject muscle relaxant. The ER doc thought a moment and considered valium. Then he went to the books and came back with Sinemet prescript. I would have preferred this in the patch.

Thank you again, Roypop. Let me know what your neuro says about Neupro patch. I have a scheduled appt on the 26th to discuss meds. I feel very much as you, I would like to postpone meds so I can experience being myself, whatever that be but I notice I am self-conscious of my now visible and obvious tremor and it makes me awkward looking so I will give in and start trying meds.

Racer

Taking that first pill is like crossing a threshold isn't it. But you will join a few million who have tried the meds already especially sinimet which has been used about 50 years now.

Just a note about your patch, you need to consider age in this equation too. The older one is the more likely one is to not tolerate agonists which includes the patch. Many doctors prefer not to prescribe the patch as first treatment when older because of side effects.

Hikoi, you are so correct. The warnings slip that comes with the medication indicates that it is not advised for people over 70. I have therefore not started the medication until I see my doctor to discuss this. I am scheduled to see him on the 26th of Feb.

I am 68. My movement neuro feels that at my age, the side effects are too risky to use the patch or any of the agonists

I am wondering what side affects. I am 67 and on patch. Was told it has least side affects. I would like to know what you were told. Please.

The side effects are listed on the drug info sheet. It's just older people often don't metabolise the drug as well as younger but if you are using the patch successfully then don't worry .

Thanks!

The information clearly advises against people 70 + so my neuro must have known it but prescribed it any how.

I guess that's why we go to neuros because they have knowledge and experience of treating many people with PD. He will know this recommendation but may have had positive experiences using it or maybe He knew your concern about levadopa and an agonist is really the only other choice he can offer.

Medicine is so much trial and error.

Why wait if you can get relief

If you wait you are losing time now for time you may get in the future.

Get relief now and enjoy life. Your quality of life is at it's best now.

Taking my meds now because i may die tonight or tomorrow.

Live for today

Bailey

I agree!

Great news

I started out on the patch but it never helped my tremor. I am now taking sinemet but still hasn't helped left hand tremor. Anyone had experience with tremors and sinemet.

Thanks for all your help.

I am on sinement and patch and my tremor is getting worse. Go figure.

And how is the LDN going cslamb?

Cannot tell how the LDN is working but after reading all the research I will continue to take it. I understand it could slow progression. I started LDN one week before my doc. put me on sinimet. I am on a 2 mg patch and starting the sinimet and LDN. Hoping I won't need to go up on the sinimet for a long time. There is a LDN conference in Orlando middle of Feb. I am not going but signed up for the live stream. Will let you know what I learn or you could listen yourself. Its LDN research. I have been emailing someone who has been on the LDN and she has not needed to increase her sinimet. There is a lot of info on the web about LDN.

Hope this helps

Thanks Roy for posting this. I think most of the advice in the article is excellent. But, as to the claim that you should take your Parkinson's drugs at precisely the scheduled time, I think this is wrong: it scares people needlessly and can lead to psychological dependency.

I'm not disputing that for many people keeping to a schedule is sensible. It's the word "precisely" that I disagree with.

Neither am I disputing that if I take a dose now, rather than having taken it 10 minutes ago, say, I might have an "off" that would have been avoided if I had taken the dose earlier. But, and it is, perhaps, a subtle point, this is not the same as saying that I am best served by keeping precisely to schedule. It could be, for instance, that taking the dose later stops an "off" that would have happened before the next dose if I'd kept to time, or the "off" may have happened even if I had kept to time.

It is hard to believe that anyone's regimen is optimal to the nearest minute, and that the optimal dose corresponds exactly to one of the discrete weights of drugs that are available (100mg, 200mg, or whatever). Indeed, if the regimen is so fragile that a few minutes either way makes much of a difference, it should be disqualified from being optimal in favour of something more robust.

The time it takes the drug to get to the brain will vary from dose to dose according to gastric emptying and protein competition. Constipation and exercise are also factors. Since the body doesn't keep to schedule, it seems wrong that I should.

I keep roughly to schedule, but "listen" to my body to fine tune the decision as to when to take my next dose.

John

I agree.

I'm of the same opinion as you John. I attend to my body and use Sinemet just as needed not on a strict schedule. Works out to about every 3-4 hours on average but not always. Some days I go as long as 6 hours. Depends on my activity level, how well I slept and if I'm under stress, diet, many things you know? I like to hope that by minimizing my intake of Sinemet I am putting off habituation , the need for more and more of it. I do not want my neuro to switch my therapy to something riskier.

yes, i do exactly the same thing...... after a terrible month of cutting of mirapexin (used it for 7 years) i am taking 25/250 l-dopa/caridopa 3 x a day. i only keep a rough schedule. my body tells me when i need it....it works fine for me gabriele

Dont use the alarms on your smartphone.

Use the countdown function.

put in the time (i use 2hours and 50 minutt),you onley due this one time.

When standing up in the morning , different time doesnt matter , you press start on countdown and take your medisin.

2h50m the alarm starts and start the countdown again and take your medisin...........

In this way you got the exsakt same time between your medisin.You dont have to calkulate when to take the medisin , youst relaks

Very easy , very politley

Roy I've been doing this for a while, but I wonder if it causes gum erosion. My gums in front are badly eroding. My dentist had no clue except thought I'm grinding my teeth at night. Has anyone had this?