My new neurologist changed my levodopa/cardopa to extended release 50/200 8 am,4pm,8pm and bed time I'll take at midnight.
I'll wake up around 4 am and take 1 25/100 and another when I wake up, which could be 6, 7 am.
Immediate release 25/100 10 am, 2, 6, and as needed. To much of a gap, one 25/100 pill will last only two hours, so I'll have to take 1 pill at 12 pm and 4pm.
I was taking 1 and half 25/100 every 2 hours on a good day 1 hour half sometimes , I'm getting more on time 3 hours on a good day with using extended release. I'm trying to stay on a schedule, because I had no schedule I just took Immediate Release when I needed it, I'm trying to follow a schedule, I find I need a pill 25/100 to stop shaking and my new symptom my lips fold inward , I have to hold lip down to talk ugh! Sometimes it's depends if my food has interfered with pills, and then I'll have to take a muscle relaxant half, I try not to take them, and lately I've been using the Inbrija for when I completely need dopamine, and seriously off, especially when I eat protein, I am a meat eater , but it's weird because sometimes my protein meal won't Interfere.
I did stop using inbrija a while ago it was hurting my throat and lungs, but had to use it lately.
I do have a question with the extended release , all I smell is whatever is in the pill, it can be very strong sometimes and I smell it in my urine to, yuk it makes me nausea because that's all I smell.
Also, my tremors are much faster now and when my pills are running out, I have to sit down, I get stiff and can't walk, I'll get stuck at the bathroom door when trying to make that corner turn, and if I have to walk, I walk backwards, I guess it's because you don't have to lift feet, I used to be able to walk when I was off, these are all new problems 2022, I've had Parkinsons symptoms since 2012. I pray for a cure, this is getting harder and harder!!
Written by
akgirlsrock
To view profiles and participate in discussions please or .
Good for your neurologist for being open to using extended-release.
People report differences from different manufacturers. You might want to inquire of your pharmacist if they can get a different version of the ER for you.
Thank you for posting this. I'm having close to the same symptoms the last few weeks but I don't use the extended release. I'm going to talk to my neurologist about it on the 22nd. 🥊
Hello, yes I have been using at night and now trying during the day, going pretty good. I use a liposome melatonin under the tongue makes me sleep pretty good. Have a good one, Maria🌺
Great I will investigate. I do think though the effects of catching covid would out weigh vaccine effects still so I think there is not an alternative to be honest.
Yes, I saw that. It doesn’t mean that there isn’t some kernel of truth in some of what he says. So I read, then I decide how it stacks up with other things I have read.
Ok, but surely the challenge is establishing which kernel is the true bit when you are not an expert? Isn't this why we try to seek out reputable experts?
Well my husband had been much better for 9 months and stable but about 2 months after taking the first dose of the vaccine he started to deteriorate and about 5 months later he is a complete mess again, back to square one. It makes sense to me that the vaccine can cause inflammation after all isn’t that what it is supposed to do to provoke an immune reaction. And inflammation is the enemy of Parkinson’s. So wouldn’t it make symptoms worse? However catching COVID’s would have the same effect x 100 so it doesn’t mean I think it’s a good idea not to get the vaccine.
Anything is possible, but I've not seen a lot of anecdotes suggesting a flare up months after vaccine administration. They generally seem to occurr in the week afterwards and then subside. Wouldnt the immune response be strongest then? I mean the immunity is actually waning after something like 4 months so why would the vaccine be responsible 5 months after administration?
A small number of people have suggested alleviated symptoms rather than exacerbation.
I would say the day to day mixed bag that is is PD is as likely responsible as the vaccine is.
I think it probably started after the second dose. I should have taken better notice, I assumed it was just a bad day, or two, until now I’m ringing the crisis centre because he wants to die and is crawling around on his hands and knees in the evenings because he can’t move, but can’t sit still if he takes his madopar, which has never bothered him before.
Yes, caused by fluoxetine, mirtazapine and sertraline. But this happened with no changes to anything he had been taking for 9 months. And on the regime he was on he was more well than for as long as I can remember, better than years before his diagnosis at least.
As the trials for the Vaccines do not end until net year they do not know how it affects the body, nor do they know the long term affect mRNA has on the immune system.
The other so called 'experts' will hit you with ' he didn't invent it' but he was certainly part of a team, ( which. I believe he ran), they try to demonize him.
I think in the US and other countries where it has rampant the data is very confused due to the numbers of cases. If you want to look at the effectiveness and safety of the vaccine study the data from NZ. There was no community spread here for a long time and by the time there was our vaccination rate was pretty high. There have only been a couple of vaccine related deaths. I think the ones in other countries are mostly cases where people were infected before they got vaccinated or perhaps when they went to get the vaccine. Otherwise why have there been less than a handful of vaccine deaths here when more than 90% of the over 16 year olds are double vaxed? health.govt.nz/covid-19-nov...
Our deaths are also still very low because we have such a high vaccination rate. And they are including everyone who had covid when they died even if they died of an unrelated cause. So on balance I am still, pro the vaccine, but do think that someone who has precarious health might have a bad reaction from it.
My mother passed away as a result of the Flu vaccine at the age of 90. She never had a vaccine in her life until her doctor highly recommended it as she was 87. She listened to her doctor and paid dearly his "medical" advice. My sister also had a severe reaction to the Flue vaccine. No one in our family wants to hear anything about the vaccines' protection. Good enough reason for me to refuse vaccination?
Yes, I’m quite sure that some people are predisposed not to react well to them. The government looks at an entire population basis and the numbers stack up but for an individual they may not particularly for people with impaired health already. But for them the risk of catching the disease is probably also high. So if they can keep themselves away from contacts they might avoid it but for us with teenagers in the house we cannot.
My sister in Greece pays 300 euro fine every month because she refuses to be vaccinated. . . Never before were vaccines mandated! I don't know about New Zealand, but mandatory vaccination is unconstitutional in the US. Vaccines are part of the 4IR and globalization. Please open the link I provided above.
Yes that is not fair. There is no fine here so you have the choice not to but people lost their jobs in some professions. However New Zealand has an extremely low death toll so the price some people paid saved other peoples lives. Only time will tell I guess about the long term effects . I would argue they won’t be discovered until we’ll after trials are over. Maybe it will take 20 years or more.
Also I think with the different types there may be one that is worse than others. I have read quite a bit on it and I prefer the Pfizer to the AstraZeneca, but the Chinese one seems more like an old style one however not very effective
Also I think the comparison needs to be the actual deaths compared with the expected deaths per population per age to get any true data as I think most countries once it has spread have no idea how many cases there are so can’t tell how effective the vaccine is. The only way to determine it is by looking at how many extra deaths there have been in vaccinated and unvaccinated people. But even that is skewed because lockdowns prevent spread of eg flu and also increase suicide and decrease road deaths.
Subscribe and you will have the opportunity to learn about various health issues. I am grateful I found his site. I learned so much. . . The comments are exceptionally educational. Another good one is Greenmedinfo:
I switched to (the relatively new branded Rytary) ER recently because my off periods were too frequent. I was warned and experienced that the initial effect of the ER version can be delayed. If I take 1/2 of a regular 25/100 carbidopa/levodopa at the same time as ER, my off period ends sooner and I stay on longer. Sometimes I can actually sleep 7 hours before symptoms wake me up; that hasn't happened for years!
If you are talking about generic ER, I found it useless. Absorption is uneven and unpredictable.
Hello Raphaekg. My husband with PD has been taking Rytary for about two months now. He still seems to need to take his medication during the night, which as you can imagine interrupts a good nights sleep. His neurologist suggested to take the regular C/L with the Rytary to fill in the “gap” but she didn’t provide any dosage information. We may try your 1/2 tablet to see if that helps. It sounds like you just added it to the usual dose of Rytary? Thank you. .
Yes, start slow otherwise you will get to much and end up with dysknesia. Mine is not rytary. I took my ER 50/200 at 8 am, and took half of a 25/100 Immediate Release to nock my tremor down, the ER takes almost 2 hours to work. thank you, have a great day, Maria 🌺
I do the same, I did try Rytary for a week which is not long a couple of times and It took to long to work, I guess it takes a bit to figured out dosage , I stopped it and went back to 25/100 immediate release, also I noticed that odd smell from pills, this was a few years ago. Thank you for sharing , have a good day, Maria 🌺
Sorry, I missed your question from before. No increase in side effects with Rytary and it does decrease my Off periods somewhat. I still don't have dyskinesias after 13 years. Evidence indicates that exercise can help reduce dyskinesias {among its many benefits}. The only side effect I ever had with c/l was intense nausea. I had to (and still need to) take a prokinetic agent for that. Note the need for slow tapering/transition discussed months ago.
Hi I have/had the exact same medication timing and issues with meals, exactly the same, what I have found recently is I have cut out (well tried the odd sweet treat slips through) gluten and try to cut out sugar as much as I can . I noticed eating sugar even to much fruit can cause symptoms like stopping in door ways and effects digestion which hampers my medication effectiveness. I noticed improved digestion and my medication works better if I stick to mainly meat. I have been eating beef mainly and noticed quite an improvement. At first I was reluctant as protein is supposed to be bad for our medication but cutting out/ down on salad fruit bread etc has helped me. I’ve not gone completely carnivore diet but my diet is more meat based now and I feel better for it.
Hello, I'm usually pretty good about staying away from gluten, with some slip ups and I definitely know gluten messes with your mood as in depression. I was staying away from sweets,, lately I've been eating non-dairy ice cream, and sugar and chocolate definitely speed up my tremor, time to wean off. I definitely like my organic grass fed burger and we have moose and eggs, I've been trying to eat burger every night , good butter, I use good lard for frying fish in pan, no seed oils, I do eat roasted sweet potatoes, with garlic,onions,broccoli, bell peppers Brussels sprouts. Meat and fat definitely keep me warm. I get cold when I just eat veggies. Thank you for sharing, have agreat day, Maria 🌺
Your story is similar to mine. I take Rytary 195 3 or 4 times a day, if I do it right, I can sleep through the night. I feel for your struggle, our disease is not for the faint of heart. Personally I have a deep faith in Jesus, which gives me hope where PD has taken it away.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Problems with extended release Carbidopa Levodopa .
How to decrease levodopa to half pills per dose 
01/11/2020 neurologist appointment 
