Senemit : I’m 2 yrs post diagnosis and have... - Cure Parkinson's

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Senemit

saraoutwest
saraoutwest

I’m 2 yrs post diagnosis and have just started senemit. Tremor dominant. I began titrating up from 1/2 Tablet 3 x per day. I’m pretty bad at taking it as I don’t really feel it makes much difference. My question is do you need to be on it for a while to feel the effects or should you feel them right away? I take 1 in morning and 1 round 3pm. I have found that my keyboard skills are better and walking is bit more coordinated but also started b1 at same time so don’t know what’s causing what. Any suggestions? Thanks

19 Replies

What dosage is your tablet? You may not be getting enough to make much of a difference. Also is it immediate release or CR?

100/25. Immediate release I think. Maybe I should do a few solid weeks on 3 per day and then judge?

If you are only taking half tablets that might not be enough. Try whole tablets and see if it makes any difference. I agree with MB Anderson that you should notice the difference right away - In a couple of hours at any rate. Also, the controlled-release version works much better for me than the immediate release.

I agree with park bear (about the dose,) but my experience is the same as yours, i.e., I'm tremor dominant and also don't notice any difference when I take the Sinemet, which I only do a few times a month, though. I believe if you're going to feel a clear difference, that would occur within 60 to 90 minutes and last for 3 to 4 hours.

If it made a significant difference to my tremor....then I would happily take it, but it doesn’t do much at all. Why do you take yours a few times a month? To see if it’s working? Is it ok for your body to be inconsistent with it? I’m waiting for mri focused ultrasound to become approved and pinning my hopes on that :-)

I believe you're correct in that inconsistent dosing is not good, but that would probably apply to people who take several doses over a few days rather than someone like me who takes only a few a month. Yes, I sometimes take one 'just in case' it helps.

I think they're having reasonably good success with focused ultrasound in Israel and Korea. How long are you expecting to have to wait?

I would be willing to travel abroad for therapy to see Dr. C or F U, but waiting in long lines, going through security, flying, sitting in the middle seat between a drunk and a loudmouth would turn me into a basket case.

Approval for FU is probably a few years off and it will be more years until insurance covers it. It was approved for ET in 2016 and I believe that people who have had the procedure outside of research have paid the cost out-of-pocket. They've expanded the study locations for the PD research. Maybe it's something to look into.

ion_ion
ion_ion in reply to Juliegrace

What is FU?

Juliegrace
Juliegrace in reply to ion_ion

Focused ultrasound.

I take 3 25/100 sinemet tablets per day. I stick closely to my timing 6am 11am 4pm and 1 rasagline a day.

I am aware to not eat close to when I take the tablets. I am gluten and dairy free also.

Pretty much all my symptoms have cleared. Tremors, balance issues, smell, freezing of my feet, difficulties in writing, I am walking much better not dragging my feet and other symptoms.

I am not having any downtime even when I wake in the morning.

All this takes me back many years.

I resisted taking the medication 'until I needed it' for some time only to find after another fall that I 'needed it now'

I also take 3 25-100;Sinemet per day at 6:30 am, 11:30 am and 4:30 pm. I also take Rasagiline, 1 mg daily. I’m also tremor dominant. I also avoid eating at least a half hour before or (less often) one hour after each dose. When the medication kicks in, about 15-20 minutes, I feel absolutely normal. I can lift heavy weights, jump around in aerobics class, no tremors, all good. The medication wears off after about four hours. I can still function, barely. I don’t have balance problems but all my energy is gone and simply preparing a meal is tough. My partner says that I look terrible at those times. Working on eliminating sugar: should dairy and gluten go too? I would miss yogurt.

Neurology appointment is today in the late afternoon when I tend to be off so My partner will drive me. I won’t drive if not feeling good! May discuss switching to controlled release. Off periods are becoming more of an issue since I started the Sinemet 15 months ago.

DianeF
DianeF in reply to Lionore

The extended release Sinemet delivers a smaller but more constant dose, eliminating down times. It works much better for me.

MBAnderson
MBAnderson in reply to Lionore

Yes, dairy and gluten should go, too, although I do eat a little yogurt periodically.

I also take 3 25-100;Sinemet per day and lead a very symptom free life now. And I also take Rasagiline, 1 mg daily. The Rasagiline alone did little for my symptoms but I take it because it has been shown to slow progression. I also find that a teaspoon of Mannitol in my morning coffee helps lessen the tiredness side effect of Sinemet some get.

Sinemet needs to be taken in sufficient quantity to reach a 'treatment zone' level in your blood stream. This zone varies from person to person. It takes time for the brains to get used to dopaminergic drugs, this is why Drs. prescribe a gradual increase until the biovailability in your blood reaches the treatment zone. We metabolize levodopa rapidly; 1/2 of the uptake is eliminated in 90 min. The most common problem with people taking Sinemet is to be under-dosed, therefore not in the treatment zone, meaning no , or very little relief of symptoms. On the other hand, if we take too much, we shoot pass the treatment zone and enter the side effects zone. Therefore, a slow gradual increase of Sinemet is required to find the sweet spot. When you find it it works very well. A good rule is to take Sinemet on time every time (don't skip doses). Those who pop Sinemet pills off and on are not following prescribed guidance and can expect unpredictable results.

Good advice, (see my next post).

Hi, I was diagnosed 17 months ago.I think the secret is to take your meds. regularly. I take 25-100 Sinemet (immediate release) 3 times a day. The first as I get up ,then have a cup of coffee 1/2hour later. (Do not annoy me 'till I've had my coffee!!!!) Second tab about 3pm and last about 8pm . I also take CBD oil (in a vape) 2 or 3 times as needed, plus hemp-oil (spray) again as needed. My tremor is noticeably reduced (50-60%) by the Sinemet,the oils by about 10-20% of that. So I am fairly symptom free, I have the occasional lack of balance (in the dark). I was even able to run for the bus yesterday (I'm nearly 69).I'm 6 ft. tall and weigh 13 st.(182 lbs), so not overweight. My main trigger is stress, so I have stopped driving, I let the bus driver have the hassle and stress and I have been retired for 9 years ,so no work stress.

I would get pretty religious about taking the sinemet consistently before writing it off. My husband was the same way, sometimes it seemed to work right away other times, not at all. They added Entacapone to his Sinemet. Perhaps you need an extra does or increased dose, but take consistently as prescribed for a long period of time before making any changes. Adding drugs makes it hard to scientifically identify what is working and what is not. Keep it simple but follow instructions carefully, including when to eat, etc. Overall my husband has benefited from this drug despite inconsistent performance.

I'm pretty sure that you'd not be taking enough medication. My hubby was diagnosed in May this year and our doctor put him on Madopar Rapid(Levodopa+Benserazide) 50mg/12.5mg. However, the dose had to be doubled to have any effect. Dosage was 3 times a day. He hid his PD symptoms for some years and feels it could be anything up to 15 yrs. when they first started. He has some "off" times and is waiting to see a Movement Disorder Specialist. Suffering Socks

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