I need your honest opinion as regards Rytary and Sinemet,I am roughly 4yrs on this PD journey,and have been on sinemet with less severe side effects,until recently the ''on period'' of Sinemet decreased to 2hrs instead off initial 4 or 3hrs.I then had to dose up to 1200mg of Levodopa over 24hrs,still with less severe side effects. In other to minimze off periods,my MDS suggested Rytary,which I am trying now,starting from the minimal dose but,It doesn't seem to be working well,because of frequent off periods. According to some of the posts I read here,most doctors would increase the dose,which usually result in severe and painful dyskinesia/dystonia.Some of these complications are not reversible and debilitating, warranting additional drug to alleviate the problem or DBS. My main problem is,no income currently as I am pending ss disability, I had to joggle with paying for drugs,medical bills,rent and other bills. What I want to avoid if possible is being financially drained due to medical expenses. So please,from your experience with these drugs, in other to minimize or prevent,a debilitating dyskinesia,which is the best way to go for maximum benefit?
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I have not developed dyskinesia yet,just motor fluctuations during wearing off. I am just weary of dyskinesia that would warrant me spending more money. Rytary which I am on now is kind of expensive,even with assistance.It depends on how much coverage you get from your insurance. Thanks for your support.LOL.
Time-released versions of levodopa such as Rytary spread the blood plasma level of levodopa out evenly over a longer period of time than Sinemet immediate release. This does not mean you can get by on a lower dosage. If you needed 1500 mg of levodopa from Sinemet daily, replacing that with a much lower dosage of Rytary is not going to work. You will need a similar dosage, at least.
Since Rytary is expensive and your finances are limited, why not try Sinemet CR?
I don't know why my MDS is so much in love with Rytary.I have complained to him about my affordability of this drug,but he insisted that the drug is very good.I will talk to him again.
A UK citizen, female, 72 yrs old and 16 yr PwP I have tried many drugs, therapies and treatments. From this patient's perception apart from the fact that we are unique so no two of us react/respond in the same way the world is our virtual oyster.I
What could be a better time to be afflicted by PD? Many subscribers to this group have made suggestions in respect of your post. That is the particular strength of this site. If you visit regularly as I have done over many years you can pick up hints and tips from fellow PwPs.
On the very first meeting with my consultant to be advised that I had PD aged 56yrs he enrolled my husband and I on a 10yr trial to evaluate the effectiveness of the 4 most popular drugs. I was randomly given Sinemet and i.thought I was dying. For the past 4yrs or so.since i.started it again it has become essential for reasonable quality of life.
Re dyskinesia had this pretty badly around 8 yrs ago and for.3 yrs took Orphenadrine which was old hat even then. I only have it up because of certain side effects. When dyskinesia struck again I was referred for DBS but my condition was so improved by.taking subcutaneous Apomorphine that I didn't continue.
Our of interest the neurosurgeon who was to have performed the DBS did not recognise the name 'Rytary'.
Can you give me more information ... APOMORPHINE ... what is it, how is it administered, what dose, what does it improve ... did you take LEVODOPA / Carbidopa at the same time?
Apomorphine as well as being an emetic for animals is also a DopAmine agonist. I take it via a subcutaneous pump for up to 16 hours a day along with Sinemet and Ropinirole 4 slow release ( Requip). I take a Madopar dispersible first thing to kick-start the day.
If you would like more info or to chat please look up my profile on this site.
I am on steleva. It’s a variation of sinemet. You should take your meds on an empty stomach or 1 hr before or after you eat protein which interferes with the absorption of the meds. It makes a big difference in the effectiveness of
I also take Azilect 1 mg and Requip XL 12 mg daily. I was in my late 40s when I started noticing symptoms. I am functioning pretty well. Exercise helps me a lot I am now almost 63.
My husband would get mild dyskenesia in is face sometimes while on Rytary. It worked a lot better for him than Sinemet to control off times. There is an assistance league that helped him get it free and has to be applied for next year before January of this year.
You say the minimal Rytary dose doesn’t work. What does that mean? You don’t go on at all? You go on but it gives you a very short on period? Either way, it probably means you need to increase the dose... If you increase the dose too much you will experience "peak" dyskinesias. If they are painful/severe then you would then lower the dose a bit... As has been mentioned previously, it is a trial and error process ...
Note that Rytary is essentially plain old carbidopa/levodopa that includes instantaneous and fancy extended release characteristics, that will yield a more consistent levodopa blood concentration. This will make it easier too avoid peak dyskinesias...
Btw what strength Rytary did your doctor prescribe, and at what inter dose interval?
Also, as I have suggested previously, you don't need to take Rytary. You can use a combination of c/l IR, c/l CR, and entacapone to try and get Rytary like behavior. To be clear, it will not be as good as Rytary, but it may be good enough (and a lot cheaper!). If your doctor is willing to give you a CR and entacapone prescription (so that you can experiment/try), I can help you come up with a dosing plan...
I mean the minimal starting dose of Rytary 36.25/145mg x3 every 6 hrs does not work well,sometimes it takes too long to kick in like between an hour and half to 2hrs,then would only work for 1 and half hour.I have had situations,when it only worked for an hour,before wearing off. I have a video consultation with my doctor coming up soon,so I will discuss with him,about additional or alternative drug,like you suggested.Thanks for your considerate support.
I get dystonic dyskinesia from everything at every dose but Sinemet ER (I have to stay at 300mg or under per day) is the only thing I can take. Rytary and Sinemet IR just cause dyskinesia with no benefit for me.
Note in calculating dosage that 1 x 23.75/95 mg Rytary = 1/2 C/L 25/100 mg.
Three times a day seems low to me; I'd ask your doctor about four times a day every 5 hours.
My neurologist advises taking with a full glass of water to absorb faster. Should kick in 30-45 minutes after taking (on an empty stomach--I agree with whoever advised that). Do not eat 30-45 minutes after taking and try to take minimum one hour after eating. Limit protein during the day. This all works for me.
I have been on Rytary for 3 years, keep dose at 2 x 23.75/95 mg four times a day. I do find I take first dose in am, need second 4 hours later, 3rd 4.5 hours later, and last 5 hours later. I also supplement with 1/2 C/L mid-dose when needed (generally needed) for off periods. I've had some dyskinesia but a bit more controllable with the 1/2 C/L option. I am also on Azilect and 4 mg Neupro patch.
As to cost, if you are not yet on SS/medicare, go to rytary.com and you can apply for financial help. Used to cost me $5 or $10 a month co-pay. Now on medicare and gov't doesn't allow the drug companies to help for some unknown (to me) reason, so now is $60 month co-pay until catastrophic level, which I'm now at. Not sure if co-pay is $30 for 90 days or 30 days, but I'll soon find out.
Lastly, it takes the body 2 weeks minimum to adjust to a new med regiment.
I am fascinated that you have some success with Rytary in combination with sinemet,Azilect and Neuropatch.Have you tried Rytary alone?If so,did it work for you?What strenght and dose worked for you? How many hours did you get as ''on time''?Any dyskinesia.
I was already taking Azilect, C/L, and Neupro when neurologist suggested Rytary. Different neurologist than I am seeing now. First one put me on way too high a dosage and it made me crazy buzzy, but still wore off at 4.5 hours. I lasted 2 days and called it the Great Rytary Fail.
Second neurologist convinced me to retry. I'm actually on a lower dose now than previously. It takes several weeks for body to adjust and to determine dosage. I was on (1 x 95 + 1 x 145) originally, but I like to take as little meds as possible, so cut back. Prior to COVID-19 isolation, I was experimenting with alternating 2 x 95 mg and 1 x 145 mg dosages, but I think the stress of isolation plus I had pneumonia late February has made me need a higher dose. I've had dyskinesia, mostly a seasick sort of swaying when my body is still, like at the computer, driving, sitting--which is why I experimented with lower dosages. Neurologist wanted to add Gocovri, time released amantadine, but with 28-31% hallucination/paranoia side-effect in clinical trial, I am steering clear of that drug. I've found purposeful movement--walking, exercise, helps channel the dyskinetic movements. Or taking a little less C/L.
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