I started Sinemet IR (25/100) on Jan. 16, 1/2 pill 3x/day. I was supposed to increase to 1 pill 3x/day after a week, but I've only managed a whole pill 3 mornings this week. I'm avoiding protein an hour before and after, so I've tried taking it with a banana, veggies, a couple of crackers, but I get really nauseous, sleepy, and dizzy every time I take a whole pill. I end up lying on the couch for 2 hours yet seeing only minor improvement in my left hand/arm rigidity, mild dystonia, and bradykinesia, and no improvement in left-side tremor.
I've also tried Zandopa and Nutrivita L-Dopa. Zandopa did nothing (tried various doses), and Nutrivita made me severely nauseous (I took it with matcha green tea powder in water).
My question is: If I keep working towards taking the full dose of Sinemet 3x/day, can I expect the nausea and fatigue to resolve over time? If not, I won't keep taking it, as I can't spend hours every day lying on the couch. I should also mention that I'm struggling to keep weight on, so the nausea and limiting what foods I can eat and when I can eat them is challenging.
I'm kind of pinning my long-term hopes on FUS-PTT (I'm 55, diagnosed at 52), but my understanding is that I need to max out the usefulness of meds in order to be considered for the procedure.
FYI, I don't have a follow-up with my MDS until early April (appointments are hard to get). I'm supposed to give him an update soon via MyChart, but I'd like feedback from those who have actual experience with this first.
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1LittleWillow
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Perhaps you are one of those people who require a very slow introduction to Sinemet/Madopar. Perhaps your neuro will suggest that you re-start with an even lower dosage and increase very slowly. For example, my neurologist starts new patients on the Madopar 100/25 tablet according to the following schedule:
--------------Breakfast Lunch Dinner
1st week: quarter quarter quarter (after meals)
2nd week: half half half (after meals)
3rd week: full full full (after meals)
4th week: full full full (half hour before meals)
5th week etc: (same as 4th week)
If at any stage in this process the symptoms disappear, you stay at that dosage. If at any stage in the process significant side effects are experienced, you drop back to the previous dosage and remain there (and contact the neuro).
Alternatively, maybe you could try a dose of 3/4 pill, since you seem to tolerate 1/2 pill, but not tolerate a whole pill. If you find that you can tolerate a dose of 3/4 pill, maybe you could stay on that dose for a week before trying again a dose of a whole pill.
Sorry, it's IR. I had read some posts here on HU discussing the difference, so during my doctor visit on the 15th, I asked the PA whether they were prescribing IR or CR, and she said they never prescribe CR for new patients who are just starting out. She also said that Sinemet is *always* IR unless otherwise specified. That's why I didn't think to specify. Oops! I'll edit my post.
If those two hours you spend on the couch are the first two hours after taking the Sinemet, that is an indication the high peak value of the IR version is too much and you need to be taking the CR version.
As far as I can tell, the idea that new patients should be taking IR is the unjustified prejudice of one influential M.D.
I used to be pretty strict about waiting half an hour before I ate, but I found that taking the pill 5 mins before eating seems to work OK for me. It's almost as if I need to start eating and that sends a message to my stomach/small intestine that it's time for digestion and absorption to start. You might find that doing this decreases the nausea - waddya reckon?
Taking it straight after meal doesn't seem to work to well though for me - I have to wait about an hour, maybe even longer if I've had a big meal.
I'm not avoiding all food with my dose, I'm just avoiding protein. I've tried different foods and I've tried varying the amounts but just haven't had any luck with the nausea yet. I'll try eating, waiting a little while for digestion to get going, and then I'll take the sinemet and see what happens. Thanks.
Hi, taking CR solved my nausea and vomiting problem. I know how hard it is to get an appointment with a neurologist. MY GP has Parkinson's patients and he can prescribe for me. I don't know why they told you they don't prescribe CR for people starting out. Maybe, they want to toughen us up. You can always split a pill in half.
She meant that THEY don't prescribe CR for their patients who have never taken Sinemet before, not that all doctors don't. She briefly explained their reasoning, but I can't remember what she said and didn't write it down. I'll ask about it again when I message them. Thanks for the suggestion.
Your dose and reaction to it sounds like me 6 months ago. I am 54 and felt like I had a very strong composition until I started the l/c. I can say it didn’t help me at all, and the nausea was so bad I was losing too much weight as well. It got to a point where I was waking up with the nausea even before taking the meds. My mds prescribed an anti Nausea which I filled but never took. 6 months forward I am certain the c/l has tamed mytremor and anxiety. I would give it months to really have an effect and do can to distract yourself from the damn nausea. Take it with food, warm tea or anything that seems to help you. Keep trying. Good luck!
I have had great luck taking my meds with coconut water (not coconut milk). Completely eliminates the nausea. Brand I buy is called BAI and I purchase it by the case from COSTCO.
I'm same age as you and Yes there is nausea , dizziness and sleepiness- I started the 1/2 pill dose and worked my way up to 3 tabs per day.. but more gradually- like every 2 weeks increased only a half pill.. I eat food about half hour after taking each pill (7:30, 11:30, 3:30pm) and this helps with dizziness and nausea for me.. as for the sleepiness- YES it tends to happen about an hour after lunch.. but I push through it ..can be bad if I'm driving! I have also felt "out of it" feelings taking C/L but I find the best thing is to do daily vigorous exercise at least 45mins- It seems to get the whole system going and I can manage the side effects better..
I also struggle with nausea. I had to give up on macuna early on because of it and started on half of a C/L IR for awhile, then switched to the ER form, which helped quite a bit with the nausea, but I still have it. Most days I’m at least slightly nauseous and have no appetite, which is a problem because I’m also underweight. The nausea is worse in the mornings too and seems better if I don’t eat at all, which is counterintuitive. I do recommend C/L ER version, as it causes much less nausea. And ginger helps too.
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