Started rytary today. Each dose lasted at least 5 hours. I think it's going to really help.
Rytary: Started rytary today. Each dose... - Cure Parkinson's
Rytary
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michaela13
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Hi can you tell me what rytery is for. My husband has Parkinson's..
But without major tremor. But has deteriorated so much in last six months.
Thanks micheala..
Hi Micheala! Rytary is Levodopa and Carbidopa in a slow release capsule. The hope is that a PWP will not have an "off" time if the medicine is taken 8 or less hours apart. Hope that helps.
Is it available on NHS prescription yet?
Is it suitable for more advanced Parkinsons
I don't know
It is made in several strengths.
Are you taking it with any other pd drugs and are you in US or UK?
Azilect, Pramepaxol, Madopar dispersable, Sinamet CD, Stalevo
I started Rytary in mid March & I am still working on getting the dosage right. I've been adding 1/2 tablet 25/100 mg Sinemet at times when I can hardly move. I've been really suffering with dyskinesia that lasts several hours after I get out of bed.
I didn't know you could add a little bit of sinemet- My Neuro is scary. I have another Neuro but 4 hrs away.
when you say dyskinesia does it affect mouths jaw tongue ??
Or is that dystonia . My husband is more advanced but they are trying mess for dementia to help him process his thought easier . It's a minefield knowing why and what
I have had PD for 25 years and been on Rytary for 2 weeks and it definitely
has not been able to do what was expected...my dosage is 4 Rytary 23.75-95 4-5 times daily. So best of luck that it works for you. Check out the Rytary web site to learn about how it works and possible side effetcs. It says on the site that the drug only stays in your body 4-5 hours.Let us know how you do.
I was told to take 3 Rytary 23.75-95 3 x a day but I changed it to 2 four x a day. I was really hoping it would be the answer to my prayer but it hasn't been. I still have freezing & a lot of dyskinesia. I think I am having more on times & I am still working on it.
I HATE the freezing
I don't know which I HATE more--the freezing or the dyskinesia!!! It's a toss up. As for being a mathematician, I am definitely NOT!
Yesterday I had dyskinesia, now today I haven't been able to move 80% of the day.
Do you think it's what we're eating that's affecting it? I think it has a lot do with it. My neuro said eating is okay, but i don't know. And i need to eat everything because my weight is so low. I lost 30 pounds. It's so difficult trying to juggle all of this, isn't it? Anyone else have suggestions who is also on rytary?
I am suppopsed to start Rytary but I have such terrible OFF symptoms I don't understand what I can do when the Rytary wears off and they only have me taking 1 pill in the AM. I have lost 22 lbs. Now weigh
103lbs. Sinemet gives me abdominal spams really bad when wares off.
I am down to 100 pounds from 139 pounds. I am convinced it's the sinemet, so what can I do? I wish I could get off it, but can't walk without it.
61.25/245 3x daily has worked very well for us. We get good coverage and limited the breakthroughs of nausea (accompanied by immobility) most of the time. If my husband transgresses and eats what he shouldn't or lays down or bends over after eating (triggering reflux) or engages in compulsive behavior, he will have a breakthrough but it doesn't last as long as before Rytary.
I have a free example from my local neuro but the DBS programming is still fresh and in process so we have decoded to wait a while to eliminate any confusions.
The last time I was at my doctor he had never heard of rotary.
I began Rytary a couple weeks ago. Getting rid of sinemet was difficult. I'm not sure I have the right dosage of Rytary. Do you think this drug is safe?
It has been tested I'm sure, so it should be safe.
Beemacs, I tend to agree with you. Not sure its all hyped up to be. Today I ate around noon and it didn't work at allk.all.I was off for about 3 hours and didn't know if I could take anything else. That was very tough. The next dose lasted 6 hours. Very inconsistent.
Isn't it the pits that this PD is so hard to figure out? I can take the same meds and one day I won't move at all but on another day I'll move too much! I still take 1/2 Sinemet when I can't move. I am determined to make it work!
Yes Rytary is very inconsistent
I am goin crazy on rytary. so confused and neuro won't let me quit yet. any successes ou there?
Have you asked your neuro about taking it differenty like a different dose or more or less often? I didn't ask mine because I don't think she knows about it. She said the 1st women she gave it to didn't like it & she quit. I'm her 2nd patient. As far as a success, it certainly not working like I was hoping it would. Yesterday, I took 2 23.75-95 at 7:30 am & I was still moving 5 1/2 hours later! The day before, I couldn't move at all. This morning, I took 2 & I['ve had dyskinesia all morning. I really hope flyingfoxone is right!
I don't know the effect of protein on Rytary but would assume it would be the same as on other dopa drugs. There are three amino acids in protein which inactivate dopa so timing is tricky, particularly with an ER because one is constantly getting a supply of dopa. Maybe Rytary is dissolved in a different place in the gut because we haven't had the protein problem on it.
I just quit rytary. It was too inconsistent for me. I was on it for a month, calling dr. many times trying to get the right combination, got up to 5 pills 4 xday. Just could not cope all the sudden being off. I hope others have better luck than I did. I was in the clinical trial and it worked good, I just don,t understand.
Hi- thanks for the info on Rytary. I dont know whether to keep on it or go back to sinemet. Neuro no help- getting second opinion but that's not until June 22. How much sinemet did you take before rytary. Was Neuro supportive? Did you have festinating gait on rytary (small steps the fall)
Thx - awaiting your reply
Sorry that I haven't got back with you, I am on 25/100-2tablets - 5times @day. Comtan 5 times a day. I have the gait problem when I am off. My neurologist was good about working with me trying to get the right combination , she changed my dosage several times ,but she wanted me to give it a chance to work and I really wanted it to work. Maybe it will work for you, I know its worked for several others. My neurologist has mentioned DBS but that scares me. Good luck . Its so hard to make these decisions
DBS is scary. I'm waiting until they get that pacemaker thing smaller and they don't shave your head and they do it while you are asleep! I've been on Rytary one month. Cant say that I like it or dislike it. I think its helping. It was a real bitch going cold turkey from four sinemet to nine rytary. I think that was wrong.
Hope this helps.
Stick with it. My husband has been on Rytary for almost two months now and it is working well. Yes there are a couple of times when it does not seem to work (just like the old C/L) but all in all much more 'on' time. It seems to take a few weeks to get into the rhythm and adjusting dosages until you find what works best for you. It seems to work best if you take it an hour before and after eating. Usually the 'on' time is 4-5 hours so it's not too hard to work in the meals. You can have an apple or something 'snacky' but a full meal within an hour either side seems to make it not work. Good luck!
thx for positive reply - I needed that so much
You are so welcome! My husband had a GREAT day yesterday and then last night was bad but today is another day and he is now having another good start. I know the pills can be confusing; he seems to do better when he has three of a lower dose than two of the larger ones. don't know why the manufacturer didn't make them 100s rather than ending in fives..it would be much easier but still it is giving more 'on' time and that means more sleep time at night too. One other thing we found is that vitamins/tums etc. seem to have an effect so we wait until two hours after he has taken his rytary before he takes vitamins, etc. We are in Orange County, California...where are you?
Here's hoping you have a good day!
Thanks again for the info. I live in West Texas
I am also getting some annoying wiggling-don't want it to turn into full blown dyskinesia. Have you noticed a change? Thanks
Rytary has given me festination of gait and for half a day I can't walk. I am super active and necver had this on sinemet. I have no dyskinesia--or very little. Neuro won't listen and said rytary won't work as I am too anxious. Thanks for the reply
Thanks for the info - it helped me alot
How's it going now?
Hi, trying to figure out what are the symptoms/feelings he has before his rytary and after?
Thanks for the info. Does your husband also take it at night? I still need something for the night time.I
My husband's schedule is 5AM (3/95s)...9AM (3/95s)...1PM (2/95s & 1/145)...5PM (3/95s)..11PM (2/95s). A full dose at bedtime keeps him awake...
How do you remember these numbers - you are awesome
Beemacs, do you think it's okay to take sinemet with the rytary if the rytary isn't working? I got frustrated and took another rytary.i figured it was okay cause it still didn't work after 3 hours. Then the last dose went for 6 hours.
I don't know this program well - can you email me? I started Rytary and an very confused. Neuros (one is nice other a meanie) are of little help. Thx It's poynor@suddenlink.net Thanks again
Get another doctor. And get an alternative doc as well who knows how to support your health thru supplements, avoidance of foods to which you are sensitive and checking stool samples for bacteria and yeast infections. Too many docs don't do this side of medicine and only pay attention to their own speciality. You must keep your body running at top speed to offset the PD symptoms as much as possible. There are dozens of things which will contribute to that.
I
How much sinemet were you taking before you tried rytry. Any side effects? I've been on it 3 weeks, Part of me wants to go back to sinemet
I was taking 4 sinemet a day, every 3 hours. But the nights were really bad. I could hardly walk. Now I'm taking 8 rytary 36/145 (2 capsules× 4 times). I do get dyskensia. The rytary lasts about 4 hours. But it's helpful at night it seems.
How bad is your dyskinesia? Did you have it on sinemet? My biggest problem is festinating gait. It is where you cant help yourself by taking real small fast little steps then fall. I evan broke a finger. Thx for the help.
I have been on Rytary for 10 days. I am 41 and was diagnosed with PD 13 years ago. I was on Stalevo and my Nuero has me currently taking 3pills (3xs a day).... dosage 36.25/125 capsules. I am very frustrated. The first 2 days were great but since it has been awful. I have a lot of freezing and "off" periods and the tremors that had gotten some control over are returning. I was to the point that Stalevo wasnt working anymore and I was taking it every 3 hrs day and night. The Rytary when it works lasts about 5 hrs, other days I am stiff and frozen all day. My Dystonia attacks have improved and I am able to sleep a little better but I have smaller muscle spasms often that burn and I have been unable to figure out a dosage schedule that works.
My Neuro is not any help and I live in a small area where there aren't alot of choices as far as Dr's go. He has pretty much given up on me and says my condition is frustrating. He should try living with PD/Dystonia. I feel alone trying to cope and cry daily. Maybe I should go back to Sinemet 50/200 CR. or hang in there w/ Rytary.
It is hard to not give up when your Nuero has. Food and stress greatly reduce Rytary effectiveness. I think I need a higher dose but Nuero says its unsafe. I have no hallicinations, etc. Any ideas?
Is it very expensive?
michaela13 How fortunate you are. what are your meds? Do you have other health issues.? I've trird so man y dosage, started with 2 med dosage, got dykinrsia so terribly bad. then 2 of the 95{lower amount every 4 hrs. it brought on side effects, skaking, fast heart rate,fast breathing{only short breathing}burning all over, weakness, felt like a heart attack. lately I'll have those sensations, last for hrs, so assume the med isn't w0rking. Haven't been ab le to do anything. My tongue swells, I must be allergic.
Appreciate any comments, I've gone "downhill" in 2 months. I do have CLL an d Rheumatoid. Foods seem to affect me, don't know what toeat. oh yes my swallowing eating now comes along wioth this problem. Terribly painful & depressing.
thanks Arthur 8 I really enjoy this web site, 11 years of pd.
Sorry it took so long to respond . I am back on sinemet 25/100 5x a day 11/2pill. Rytary did not work for me. Too inconsistent and I can't swallow capsules. I always end up with the sinemet. I do get diskinesia but I guess I have to live with that. Good luck.
Read all the side effects. There are tons of warnings on all PD drugs. Drowsiness, heart attacks, addictive behaviours are to name only a few. The reason we are taking these meds is because we have no choice. No drug is totally with out risks.
Awesome! My husband newly diagnosed was put on Rytary. Started with 36/145 1tab 3 x per day and now is on 2 tabs 3 x per day - 6 total. He has so much pain in his hips down to his feet and so much dizziness (which he even had before starting the meds) that he says he cannot tell if it is helping. Can you tell me what your feeling are before and after you take it and what makes you say it's really going to help? THANKS!
Sorry should have said he's been on it for about 3 weeks now.
My husband took for about a year after the drug was first released in the U.S. At first it worked for him but then became unreliable and was always frustrating to decide whether to take a sinemet to help which sometimes doubled the amount and then would have dyskinesia. Tried the new drug Xadago as well but no significant difference so discontinued that in a few months and went back to the more reliable, much cheaper good old sinemet! My husband too has orthostatic hypotension from the drugs and the doctor finally gave him some midodrine which seems to help with that. The new extended release Amantadine supposed to be available in the States next year might help with the ortho/hypo. Good luck to you ... such a tricky endeavour but luckily there are a good group here to help us!
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