The Value Of Carbidopa Levodopa Demonstrated in Two Signatures

[jimcaster]

One of the first decisions a PwP must make is when (or whether) to begin taking medication. There is no correct answer and we all know how PD varies from person to person. I held off for 2 1/2 years after my diagnosis, but a relatively minor event today caused me to pause and think about how well sinemet has worked for me. I'm glad to be taking it.

I own some rental properties and met with a tenant today to renew her lease. The photo attached to this post shows my signature on the renewal today at the top and my signature on the original lease one year ago at the bottom. The difference was dramatic to me. What the signature doesn't show is that it took me a long time to make each of those tiny letters a year ago. I remember skipping my middle initial because it was just too much work.

Whether it's something relatively trivial like my signature or something vitally important like how far I can drive a golf ball (haha), I am grateful for the medication. I don't know how long this will last, but I am enjoying one day at a time and it takes something like my signature comparison to really drive home the point. I am significantly better off today than I was a year ago. I want to give partial credit to my coronet duo red light hat, but the vast majority of the credit goes to the 3 small generic sinemet pills I swallow each day.

[Farooqji]

How much dose you take and is it IR or CR

[jimcaster in reply to Farooqji]

I take 1 immediate release 25/100 pill three times per day. If I am going to exert myself physically (play golf, etc.), I will sometimes take 2 pills as my dose before golfing. So most days I take a total of three pills. Some days I take 4.

[Smittybear7 in reply to jimcaster]

Any side effects? I think I may need to start medication and am scared to death.If your going to have side effect how soon do they occur?thanks

[jimcaster in reply to Smittybear7]

I have had zero side effects.

[mauigirl18]

Thanks for that Jim. I was diagnosed three years ago. I struggle with this every day whether or not to start it.

[jimcaster in reply to mauigirl18]

It's tough to watch Michael J. Fox squirm because of dyskinesia, but then I remind myself that he was in his 20's when he was diagnosed and that was nearly 30 years ago. I worry about dyskinesia, but there are no guarantees (good or bad) about the future. We only have today. Today is much better for me because I "caved in" and started taking sinemet. I have no regrets. I was diagnosed in May, 2018 -- just a few months before you. No matter what you decide, I wish you well.

[park_bear in reply to jimcaster]

The modern pre-levodopa era of Parkinson’s disease: insights into motor complications from sub-Saharan Africa

pubmed.ncbi.nlm.nih.gov/250...

"We conclude that motor fluctuations and dyskinesias are not associated with the duration of levodopa therapy, but rather with longer disease duration and higher levodopa daily dose. Hence, the practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified."

[jimcaster in reply to park_bear]

Exactly. It's not the carbidopa levodopa. It's not even the amount of time on carbidopa levodopa. It's just the progression of the disease over time which leads to dyskinesia and that progression advances at the same rate regardless of when carbidopa levodopa is initiated.

[artinson in reply to jimcaster]

Hi Jim,

What was the tipping point for deciding to start medication? I'm in really early stages (my presentation so far is similar to yours, only bradykinesia - no tremors) and I'll have my second appointment with the neurologist in September so I would like to have some ideas for discussion.

thank you,

indira

[jimcaster in reply to artinson]

I developed dystonia (curling toes) in my right foot when I tried to jog or walk more than a block. Although poor handwriting and poor sense of smell were frustrating, the dystonia was disabling. Sinemet completely resolved that problem.

[artinson in reply to jimcaster]

Thank you.

[laglag in reply to jimcaster]

l glad you're doing so much better Jim. On your comment about Michael j fox, my dyskinesia is better than it used to be but I would rather have it than tremors. One reason is I feel happier when I'm on than I do when I'm off.

🥊

[Juliegrace in reply to jimcaster]

MJF was, I believe, 34 when he was diagnosed.

[jimcaster in reply to Juliegrace]

According to Google:

Michael J. Fox, iconic actor, author and advocate whose Hollywood career has been marked by worldwide acclaim, honor and awards, launched the Foundation in 2000 after publicly disclosing his 1991 diagnosis, at age 29, with Parkinson's disease.

[Juliegrace in reply to jimcaster]

My mistake. He was in his 30s when he went public.

[Hidden]

Love it!

[Kwinholt]

Jim, I am very grateful for the medication as well. Nine years ago I didn’t really have much of a choice to wait to take it bc I couldn’t walk and the medication enabled me to continue an active life style. But recently I had a reality check on how much it really helps me. For approval for DBS you have to be evaluated “off” meds.😳 I could barely move or talk clearly because my face was locked. My tremors were more extreme and apparently I couldn’t control my saliva because I was drooling. I know these meds come with a lot of side effects but I am so grateful that they are available when we decide we are ready for them. Take care my friend. Karen

[Hidden in reply to Kwinholt]

I think of you often Karen. I know you are such a tough cookie and I deeply admire that. I’m learning to be more tenacious.

[Kwinholt in reply to Hidden]

Christina, You are so kind. I try to be strong but I do have weak moments . I try to get as much knowledge and research on things available so I can make an educated decision for myself. You have to be your own advocate. Chin up and always remember your not alone. 🥰. Karen

[pdpatient in reply to Kwinholt]

How long were you asked to be off the medication before you went to the doctor’s office, Karen? Were you able to take your medication right away after the exam was done?

RKM

[Kwinholt in reply to pdpatient]

Pd, I was asked to not take my meds 12-18 hours before the appt. I did 15 hours and they told me to bring the meds with me and as soon as the appointment was over, I can take them. Mind you , for nine years I have never not taken my meds even with surgeries ect so it is amazing when you can feel and see the meds start releasing your rigid body and the tremors calm. I am so grateful. Karen

[jocelyng]

During the election, I cried for the very.first.timesince my diagnosis in 2018. (I was signing my absentee ballot.) My signature was so different that I was afraid it wouldn’t count. Now, my signature is almost the same as before, I whipped a custard base for ice cream by hand last week (I’ll admit that my arm almost fell off, but that’s a different story), i knit at my former quick pace and I’m back to chopping efficiently. I take 3 IR/day. No regrets whatsoever.

[jimcaster in reply to jocelyng]

Good for you! We are taking the same dose and have enjoyed the same benefits.

[MyGolf]

Me too. I love to golf and so far I’m proud to be able to. ⛳️

[juiceter7 in reply to MyGolf]

I love playing golf too and it’s so therapeutic ! I take 250mg Sinemet IR x5 and 1 melatonin at night. Best combo for me

[alaynedellow]

When you can see improvement its like a lightbulb moment isitn't it Jim

Glad you are doing well

my hand is better now and I doing some arty stuff again and very slow crochet

[jimcaster in reply to alaynedellow]

It really was a light bulb moment. I knew medication helped, but seeing is believing.

[Smittybear7]

Do you have tremors or freezing or rigidity?Are any of these helped with sinemet? Is sinemet the same as cl?

[jimcaster in reply to Smittybear7]

I have never had tremors or freezing. I have minor rigidity and slowness when unmedicated, but poor handwriting and poor sense of smell have always been my most obvious symptoms. Yes, sinemet is a brand name of carbidopa levodopa.

[Smittybear7]

How do they determine the dosage? I have to wait until October for my next appointment with the neurologist.

[jimcaster in reply to Smittybear7]

Most likely, you will start with a dose of 1/2 pill 3 times a day for a week. If that doesn't seem to be enough, then increase to 1 pill 3 times a day for a week. If that's still not enough, then increase to1.5 pills. If that's not enough, then 2 pills. You will stop at the lowest dose which pretty much gets you back to normal. For me, that was 1 pill 3 times per day, which seems to be a common first dose. I have no regrets whatsoever.

[Smittybear7 in reply to jimcaster]

Thanks who adjusts your dosage?

[jimcaster in reply to Smittybear7]

The doctor, after consulting with me. I met with either the neurologist or a nurse practitioner a few times in the first couple of months. Now I will see them every six months unless unexpected problems arise. I don't expect any problems for years.

[Smittybear7 in reply to jimcaster]

Is a pa allowed to start people on medication?

[Hidden in reply to Smittybear7]

I don't know what a "pa" is.

In the US, doctors and "nurse practitioners" can write prescriptions...

[Smittybear7 in reply to Hidden]

Thanks pa is a physician assistant

[Hidden in reply to Smittybear7]

Apparently Physicians Assistant can also write prescriptions:

"PAs are medical professionals who diagnose illness, develop and manage treatment plans, prescribe medications, and often serve as a patient’s principal healthcare provider. With thousands of hours of medical training, PAs are versatile and collaborative."

[Smittybear7 in reply to Hidden]

Thanks for all your help. Keep in touch

[Smittybear7 in reply to jimcaster]

Which is better cr or ir and how do you know which is better. Do you have to be tested or are symptoms what they use to determine the medication and dosage?Thanks for all your help

[Hidden in reply to Smittybear7]

If you are newly diagnosed, they will often start you on IR and then as Jim said "start with a dose of 1/2 pill 3 times a day for a week. If that doesn't seem to be enough, then increase to 1 pill 3 times a day for a week. If that's still not enough, then increase to1.5 pills. If that's not enough, then 2 pills. "

IR can get you "on" much faster than CR, but CR lasts longer.

IR will have a higher peak concentration, which may result in dyskinesias, but it is typically not a concern for people recently diagnosed...

[Smittybear7 in reply to Hidden]

I was diagnosed with Parkinsonism in 2017.i am not on any medication but take supplements. My original symptoms were right side weakness ,,resting tremors and dragging my right foot. MRI did not show a stroke. I sleep very well at night and have a good sense of smell. I can't sit for more than 5 or 10 minutes without getting cramping in. My quadriceps and big toe. I have a groin pull or hip flexor injury. Getting an MRI for the cramping issues. Arm swing isn't the best and. I started having episodes of freezing after starting b1. I stopped taking b1 for a couple of weeks. No changes so I am going to restart the b1 at a lower dose. So I am not sure what I have and am hesitant to start medication.

[Hidden in reply to Smittybear7]

What does your doctor think you have?

Btw, if c/l eliminates your tremor and returns your arm swing, there is a good chance you have parkinsons. Even if you are hesitant to take meds, just trying c/l to see if it alleviates your symptoms seems like and easy decision to me ie, low risk high reward, but this is something you should discuss with your doctor...

[Smittybear7 in reply to Hidden]

Thanks How long does it take to know if it is working?what happens if it isn't Parkinson's? Side effects???

[kevowpd in reply to Smittybear7]

Can you articulate what side effects you are concerned about?

Levod is correct. Experimenting with CL is basically all upside.

[Smittybear7 in reply to kevowpd]

Thanks

[jimcaster in reply to Smittybear7]

For me it takes between 30 minutes and an hour to take effect. I have had zero side effects.

[Smittybear7 in reply to jimcaster]

Thanks I will try to find out you on Facebook

[AmyLindy in reply to Hidden]

Amen

[Lin1950]

I’m at the crossroads of should I or shouldn’t I? I was diagnosed 6 years ago and am currently on 1 c/l 25/100 at night. I take it at night because I can sleep through the first 6 hours which is the time I can barely walk. I don’t know what the official name for it is but I’ve not seen any posts describing this what I assume is a side effect. However when I wake up and get my senses about me I can walk but I suffer bradykinesia and other PD symptoms so I am by no means perfect. I’ve asked 3 doctors about this with no valid answer other than I’m under medicated and they prescribe the IR which is worse. I see a new dr. In August and am not sure how to explain any different for him to understand I haven’t seen a neurologist in 3 years. My primary authorizes my c/l and I read this thread faithfully. I am not on B1 because 100 made me jittery. My blood pressure is more high than low but we’re working to stabilize. I’m not sure if this is the thread I should be on but again I’m at the crossroads. Thank you for any help you can give

[Hidden in reply to Lin1950]

It seems like you've suffered long enough, and it's time to get you properly medicated.

"they prescribe the IR which is worse"

What do you mean by this? Please clarify.

Also, have you tried CR?

[Lin1950 in reply to Hidden]

Im on cr now. After about 18 hours I start running out of gas and take cr again at night to start all over again. The last time I tried IR I slept soundly for 4 hour and couldn’t walk for 2 in the middle of the day

[Hidden in reply to Lin1950]

CR doesn't last anywhere near 18 hour.

Why don't you take several doses over the course of the day?

To get good relief from you PD symptoms you need to keep the amount of levodopa in your blood above your therapeutic threshold.

"couldn’t walk for 2 in the middle of the day" Are you missing a word here?

[Lin1950 in reply to Hidden]

Hours. There seems to be 6 hours at the beginning of a dose when my legs stiffen up.

[Hidden in reply to Lin1950]

If you are taking a single CR tablet, it may insufficient to bring you over the levodopa concentration therapeutic threshold and you are experience the side effects of not enough c/l.

My best advice would to follow a ramp-up schedule like Jim described above (using IR instead of CR) at least until things start looking as they should.

That said, you should discuss with your doctor before making any changes.

[Lin1950 in reply to Hidden]

Hmmm. You’ve given me something to try before I see new dr. Thank you

[Smittybear7 in reply to Hidden]

What is cr and ir?

[Hidden in reply to Smittybear7]

cr: controlled release (aka, extended release)

ir: instantaneous release

[jimcaster in reply to Lin1950]

I'm sorry to learn about your challenges. One thing I know is that we are all different and there is no "one size fits all" when it comes to Parkinson’s Disease, but I encourage you to take a very active role in your treatment. Learn as much as you can and keep trying and/or adjusting your treatment until you are satisfied. This isn't true for everyone and I anticipate that things may change between Year 3 and Year 6, but I have absolutely no complaints right now. The single biggest reason for that is sinemet three times a day.

[Kwinholt in reply to jimcaster]

I couldn’t have said it better. We all need to be present in our lives today and enjoy life and not suffer if we can change that. Who knows what tomorrow will bring. Karen

[Lin1950 in reply to jimcaster]

I thank God for your post and success. The handwriting pictures spurred me on to finally put into words my dilemma so for this I thank you. However I realize that I should probably start a new thread with it.

[Hidden]

Great advice Jim!

[PDGal4]

Thank you for sharing. I was diagnosed in 2012 and was originally given Mirapax, a dopamine agonist. When I titrated up to full dose, it made me extremely nauseous so I cut back, but was still very tired. One of the side effects/warnings is falling asleep during activities of daily living. I was petrified of falling asleep while driving.The neurologist who diagnosed me retired shortly after. The new neurologist said my dose of Mirapax was so low it probably wasn't doing anything for my symptoms but only making me tired, so he took me off of it. He supported my not wanting to take meds, but I was slow, stiff, and had no arm swing. I couldn't walk because of bad dystonia in one foot. C/L allowed me to resume walking and hiking and other activities I enjoyed doing. I am on far more meds now (Azilect, Neupro, Rytary, C/L), although I've tried to keep dosages as low as I can and have pretty much been on the same meds and doses for the past four years. My neurologist says he's made very few med changes for people who exercise over the years. The meds allow me to do that and more.

I do have some dyskinesia. When I do, it's worse when I am sitting, like to drive or type. I find getting up and walking around or doing something physical, like working in the garden, helps dispel some of its energy. Someone asked about side effects when starting C/L. I would get nauseous if I didn't take with food, but that passed as my body got used to it.

[jombi in reply to PDGal4]

You mentioned the meds you take. You said two of them are Rytary and c/l. Isn't Rytary the same as c/l, just a different delivery system?

[PDGal4 in reply to jombi]

Yes, Rytary is time released C/L. Rytary does not last me 4.5- 5 hours between doses. I use the immediate release C/L like rescue med, but find I get better results if I don't wait until I am completely off. Also a good boost before exercising, which zaps me of all remaining dopamine.

[Rebtar]

I waited 2 1/2 years to start taking C/L for fear of side effects. Although my physical symptoms weren't debilitating, they were annoying, and my emotional state (depression/anxiety) was not good. I WISH someone had told me C/L can help with depression and anxiety!

I started taking 1/2 a 25/100 C/L in 2018 three times a day and ALL of my symptoms went away, including the residual depression/anxiety that I had been working to overcome. I was able to reduce my psych meds substantially. I felt normal for the first time in around 15 years. I'm now taking 1.5 four times a day, and still almost no symptoms or side effects with C/L.

Foot dystonia is what I call my lead symptom. If I'm getting dystonia when walking (not around the house, but out walking for exercise), then I'm undermedicated. I found that three times a day didn't give me good support for exercise at the end of dose, so one of my docs recommended four times a day. Works great!

[JBOVERT]

HI JIM so tell me what is the schedule for your c/l meds I need to be able to write better than I am... do you get up and eat one as soon as you wake or do you wait for an hr or two and do you ever forget to take a dose what happens when you remember

[jimcaster in reply to JBOVERT]

Generally, I take 1 around 9:00 a.m, 1 around 1:00 p.m., and one around 5:00 p.m., but it varies a little bit depending upon my meal times and social schedule each day. If I forget, I take a pill (as long as it's an hour before or two hours after eating protein) and then I adjust my remaining doses accordingly. My handwriting is dramatically better than it was even many hours after my last dose. I can take my last dose at 5:00 p.m. and still write well at 11 (18 hours later) the next morning without a morning dose. I believe my coronet duo red hat has something to do with that, but there's no way to know for sure.

[JBOVERT in reply to jimcaster]

I ALSO have the coronet red hat and will use it once when I get up in the morning and again around 12 to 16 hrs later and sometimes I will throw in a session in the middle of then day! How many carbo dopa levadopa are you taking each time?

[jimcaster in reply to JBOVERT]

1 each time. Occasionally 2 if I will be exercising.