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Starting to dread 'med' time


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14 replies to this topic

#1 MarkDC44

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Posted 17 December 2016 - 08:13 PM

I was diagnosed PD at the beginning of October, and started taking Ropinirole back then with no side effects, but not much result either.
 
A few weeks ago I started taking Carbidopa25/Levodopa250.  (Along with the Ropinirole.)  For the first week I took a half-tablet 3 times/day.  The first day was fairly awful - I'd get slightly nauseous about a half hour later and then light-headed and weak another half-hour after that and feel crappy for still another hour or so.  After a couple days of that I got smarter about drinking more water before taking it, also ate some crackers before it (the heck with the empty stomach thing!).  By the end of the first week, I had a couple days of not feeling bad at all.  Life was good, and the effects were Very good.
 
But then the 2nd week I began taking a full tablet 3 times/day, and immediately went back to the same crappy feelings.  I thought I'd adjust to the med in the same way as the first dosage, but I'm finishing a second week of that and not getting used to it at all.  The nausea isn't too bad any more, but I still get that feeling of general sick/weak/wooziness, and I sort of 'crash' for about an hour or even more.
 
I know everyone is different, but - how does this compare to your starting out with the med?  If I suck it up for another week or more, might I adjust to this and be OK with it?  I like the effectiveness of it, but I'm beginning to dread taking it.
 
ALSO:  Reading thru these topics, I don't see many people who list the same med 25/250.  Seems many folks have 25/100, or nn/200.  Am I starting with something strong?
 
Thanks,
Mark
 

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#2 MarkDC44

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Posted 17 December 2016 - 08:26 PM

I meant to ask more than the above, forgot...

 

If you try to eat "around" taking this med, in order to get the best effectiveness of it, when do you eat in relation to taking it?

How long before, or how long after, taking the med?



#3 Waywrd1

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Posted 17 December 2016 - 10:02 PM

And how far apart are your doses?

#4 Waywrd1

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Posted 17 December 2016 - 10:07 PM

Well, strong is totally unique to you.

Did your doc say why they think 25-250? And is that regular release, CR (controlled release or ER (extended release)?

My perception is that most start on most start with RR 25/100.

#5 Beau's Mom

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Posted 17 December 2016 - 11:59 PM

At the time of my diagnosis, I was prescribed three 25/100 carb/levo per day. It was soon raised to four/day. I felt nauseous; water crackers or saltines helped and eventually my body adjusted.

 

I am surprised at the high dose you've been given, too.  You might want to call your doctor and tell him what's happening. The carbidopa is the anti-nausea ingredient. The levodopa is the synthetic dopamine. It can be adjusted. Also, different manufacturers of generic carb/levo use different inert ingredients (fillers, coloring). You could be reacting to those and switching manufacturers or using brand name Sinemet might help.

 

The only safe anti-nausea drug for PWP is Zofran, if it gets to the point where you can't keep it down.

 

Dianne


I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

 


#6 stump

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Posted 18 December 2016 - 12:41 AM

Initially I didn't have any nausea at all with the meds.  After a while I found that if I took it on a totally empty stomach I would sometimes get a slightly sick to my stomach feeling.  That was usually 45 minutes or so after taking it.  This was exacerbated by vigorous physical activity and/or caffeine consumption (generally black tea for me).  A cookie, some crackers, etc would knock that back within a couple minutes of eating it.  Drinking enough water also helps.

 

The sleepiness is an issue for me too.  It's mostly a problem in the afternoon. Cutting back a bit on that dose has helped.

 

I will agree with the others on here that you need to discuss your dosages with your doc.  See what the doc says about going to 25/100.  If that helps with the nausea and sleepiness then stick with it.  If not, you'll have to try something else.


Official Dx 9/30/2015 (Age 38)

Current Medications:

C/L 25/100 - 1.5 tabs 3x per day

Trialing Rytary 95 in place of C/L.  Starting at 2 caps 3x per day.  Debating increasing to 3 caps morning and night.

Azilect 1mg - 1 per day


#7 PatriotM

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Posted 18 December 2016 - 06:46 AM

So, since Sinemet only treats symptoms and doesn't change the course of the disease, I guess the question is whether the improvement in PD symptoms is worth the negative symptoms from the Sinemet. I would also consider that taking Sinemet starts the clock on dyskinesia.

Diagnosed 9/2013

Not taking any PD meds (stopped taking Mirapex due to fatigue)

Using exercise to battle PD

Walk minimum of 12,000 steps a day which improves rigidity,balance, etc (everything but tremor)


#8 swva

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Posted 18 December 2016 - 11:24 AM

I think that starting out on 25/250 may be why you are feeling bad. Most seem to start out on 25/100 and take a few weeks to get up to 3 tablets per day. You may be titrating up too fast for your body to adjust to the meds. My symptoms slowly began to improve after starting Sinemet, but it took several weeks to feel better. Hopefully you will adjust to the meds and your symptoms will continue to improve.

 

I feel that improving your symptoms will allow you to continue to feel good enough to exercise and stay in shape, which will benefit you in delaying physical impacts which could be disabling.

 

I don't worry much about the negative symptoms of Sinemet. I will deal with those if and when they occur. Studies have shown that Sinemet is the best option for treating PD and disease progression is more responsible for dyskinesia than the total time on Sinemet.

 

http://www.medscape....cle/826523#vp_3

 

http://brain.oxfordj...7/10/2731.short


Male

Noticed tremor December 2014 at age 44

Diagnosed March 2, 2015

3 Sinemet CR 25/100 per Day
2.5 mg Isradipine twice a day


#9 stump

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Posted 18 December 2016 - 11:38 AM

So, since Sinemet only treats symptoms and doesn't change the course of the disease, I guess the question is whether the improvement in PD symptoms is worth the negative symptoms from the Sinemet. I would also consider that taking Sinemet starts the clock on dyskinesia.

 

Latest research I've been hearing is that delaying C/L has little if any effect on incidence or severity of dyskinesia.  Delaying C/L for a few years might save you a few months of dyskinesia.  But that would be at the cost of years of reduced quality of life.

 

We all have to make our own decisions on which meds, if any, to use.  And side effects rightly are a big part of that analysis.  On the basis of minimal and very manageable side effects I've made my choice to go ahead and use it.


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Official Dx 9/30/2015 (Age 38)

Current Medications:

C/L 25/100 - 1.5 tabs 3x per day

Trialing Rytary 95 in place of C/L.  Starting at 2 caps 3x per day.  Debating increasing to 3 caps morning and night.

Azilect 1mg - 1 per day


#10 Pathfinder

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Posted 18 December 2016 - 11:43 AM

I meant to ask more than the above, forgot...
 
If you try to eat "around" taking this med, in order to get the best effectiveness of it, when do you eat in relation to taking it?
How long before, or how long after, taking the med?


My husband takes one and a half CL25/100 Four times a day. The best dosing for him is 7:00, 11:00, 3:00, 7:00 with meals at 9:00, 1:00, 5:00, and a snack at 9:00 if he needs one. He also has Gasteoparesis which further complicates things for him.

#11 Waywrd1

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Posted 18 December 2016 - 02:03 PM

The only thing even remotely western medicine "proven" to delay the disease, and or is neuroprotective is exercise.

Take the Med's on a consistent schedule, and try to maintain a window of a half hour before you eat or an hour after from a dose. The hour after can easily be shortened once you figure out of food hinders your absorption.

If you find yourself in a bit of a panic, orange juice and caffine tend to force the c/l into your system a bit quicker.

#12 MarkDC44

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Posted 18 December 2016 - 03:18 PM

Thanks everyone - much info here in your responses.

I'll check in with the dr's office on Monday, and I'll especially press on the question of the dosage.  Hey, for all I know, he really prescribed 25/100, and somewhere in Pharmacy it got messed up! 

 

I've been taking the med 3 times per day at around 8:00, 12:00 and 4:00 pm.  Based on what I've read from lots of people, it sounds like spreading it out to 4 times with a less potent dosage on each one might be easier to take.

It's good to hear that at least some of you did adjust to it a little.  



#13 CaseT

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Posted 20 December 2016 - 12:08 PM

Hi Everyone,

 

I'm 64 years.I was diagnosed 1 year 7months ago. I was prescribed Carbigopa/Levodopa 25/100, 3 times a day. It did make me quite nauseous so I ate some saltines and that helped quite a bit.

Then I stopped taking the medication after a couple of months. I was afraid of dyskinesia. I have longevity genes. I could easily live another 25-30years.

I didn't see my doc again until last month (more than a year after getting diagnosed). He explained that the C/L just replaced the dopamine in my brain.

This may sound silly but, I think I partly stopped taking it because I was in denial. Even tho, my tremors were pretty bad in my right hand and my right leg, I just didn't want this disease and I don't like taking pills so I just grit my teeth and bared it.

 

Anyway, I started the pills again after seeing my Doc this last month.  I take 1 pill 4 times a day, 7am, 11am, 3pm, 7pm. During this time I noticed the nausea is not so bad but once in while I need a couple of crackers. It is nice to get some relieve from the tremors and stiffness. 

I do however feel quite tired in the afternoons. I eat at 8, 12, and 5. and snack at 9. This schedule is working quite well for me.

 

Just wanted to share my .2 worth. Thanks for being here.


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#14 TexasTom

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Posted 24 December 2016 - 07:15 AM

Remember you should tritrate (slow ramp up). Starting with 25/100 Carbidopa/Levodopa

week 1:   1/2 tablet morning and night.

week 2;    1/2 table morning, noon, and night

week 3;    full tablet morning, 1/2 noon, full night.

week 4:    full tablet morning, noon, night.

 

Lots of water, as it is absorbed in the small intestine.

 

The Dyskensia.... typical never happens to older Parkinson's. Starting C/L over 70 years old is not an issue.

Starting at younger than 40, over 50% developed Dyskensia.  Source: Dr. Ahlskog "Parkinson Treatment".

Still grateful to the person who recommended that book. Goldmine of excellent information.


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#15 afroney

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Posted 07 January 2017 - 01:49 AM

Latest research I've been hearing is that delaying C/L has little if any effect on incidence or severity of dyskinesia. Delaying C/L for a few years might save you a few months of dyskinesia. But that would be at the cost of years of reduced quality of life.

We all have to make our own decisions on which meds, if any, to use. And side effects rightly are a big part of that analysis. On the basis of minimal and very manageable side effects I've made my choice to go ahead and use it.


And some don't experience dyskenesia at all. Dad has been taking Sinemet for nearly 20 years now and has managed to avoid that side effect, in spite of the extremely high dosage he takes.

I experience it very rarely, and it only manifests in my legs.

The nauesa thing tends to settle down after a couple of months following a dosage increase. At least for me.




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