Please help solve this puzzle,everyone who has experience with Rytary. I am new to this drug ,Rytary and my drug schedule is 4capsules 36.5/145mg at 7 am,1pm and 3 capsules at 7pm. My problem is my Rytary first dose sometimes works for 4 hrs,as expected in the mornings but with severe fatigue,and no fatigue,when it only work for 2hrs. The dose at 1pm and 7pm works fine.
Kindly assist with any explanation that you have as regards your experience with this medication.Please don't tell me to dose up,as my MDS's I just want to know why this is happening.Thank you.
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OREOLU
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Yes, it is an extremely frustrating aspect of the product. It is slow and sustained release, which is why it builds up slowly over the day and becomes better in the evenings.
I guess that is why I was getting a lot of side effects because of my supplementing with Sinemet because once Rytary had a chance to build up, the levels of Levodopa in my blood plasma became too much and hence uncomfortable and uncontrollable dyskinesia.
Please keep asking us these questions publicly on this website and please keep IMing me for anything private. Believe in or not, I am beginning to look at my own response to Rytary with a different perspective and I am astonished at the clues that I missed. I never thought about asking for community help like you are and I might have been in a different place if I had.
I highly encourage every forum member who takes Rytary to PLEASE, PLEASE chime in. We pay a huge amount of money for Rytary (even if through insurance, which affects all of our rates eventually). So, it's in our best interest to make the best usd of a complicated medicine such as Rytary. Every experience counts!
So, Oreolu, a great "Thank You" for your invaluable contribution to addressing the information deficit about the product which I might grudgingly acknowledge is a very well thought out medicine and well executed, but very poorly communicated.
Hopefully, together we can tame this so called revutionary pill.
I cannot take extended release sinemet. It inevitably stacks up on me and by evening I have such bad dyskinesia that I can't sleep. I am back to immediate release C/L 25/100; one when I wake up and then one every 2 hours. I feel so much better. I have also started back on clonazepam .5 mg at bedtime and I'm sleeping much much better. I have not even had to take any C/ L at night. I love to read but I would prefer not to be doing it at 1 a.m.
I have never taken rytary but I am going to assume it would be similar. If not I would love to hear about it. With the extended release I still had to take an immediate release in the morning just to get it going. Too unreliable for me.
Enidah. If you are doing well on your current regimen, don't change anything. Never worth it. You might think that you will do better than now, but it never does at least in my experience. Rytary is supposed to be a more advanced version of Sine-met XR, but i think they overdone it. It is also very expensive. Average about $1200 a month without insurance.
Yes. In the UK if your Doctor prescribes one drug or six, and irrespective of how expensive the medication might be, the monthly charge is still $10. (Unless you are a child, over 60, poor or have a serious condition or disability like cancer, when the prescriptions are FREE!)
pdpatient, thank you for that pragmatic feedback. That is human nature in a nutshell. We don't do so well in the contentment department. If we are doing well we think, how can I do better? As far as PD meds, I agree with you. I am back to the simplest of regimen now and feel better than I have in ages. I am just taking the sinemet immediate release and amantadine and restarted a low dose of clonazepam for my REM sleep disorder. The list of things I have tried is quite long and I saw little benefit.
The stacking up effect will happen with all c/l formulations, but indeed it will be greater for "extended" release variants like c/l CR or Rytary. That said, you can counteract the stacking effect by increasing the inter-dose interval. In fact, for every dose amount /formulation I think there will an inter-dose interval value where there will be no stacking effect at all, and above this amount you will start to see the stacking effect, and below it the opposite ("unstacking" :)).
Btw, if the cost of Rytary is no issue or if you qualify for aid, it may be worth trying, to see if it improves your situation, but I understand pdpatient's advice to "don't fix something that is working well for you".
You are quite right, stacking can happen with the immediate release C/L also. I am very careful of doses and times. It is a fine line we have to walk and that line can change all the time depending on stress, food, meds... It helps greatly in this game to have a slightly curious scientific brain. I watch it all with interest and a great deal of humor, unless things are going poorly and then I just cuss a lot. Very helpful.
I hope you getting some valuable time with your medication combination. About Rytary,very expensive drug, still easily frustrating,while on trial,as a monotherapy drug. Yes,I decided to post this question publicly,so fellow parkies,can learn something from the responses. I bet you are enjoying the weekend.God bless ,my friend.
If you are taking vitamin B6 in the morning around the same time you take the rytary that would do it. B6 would be included in a multivitamin or B complex.
I take 23.75/95 MG Rytary 4 x a day. I also supplement between doses 1/2 C/L 3 x a day. I have been on this dosage/regiment since June 2017. Generally Rytary works best for me in the morning (7.30 a.m.) and mid-day (12.00 noon) dosages. My 4.30 dose is generally the least effective as I am tired.
I have mixed feelings about Rytary. I seem to have a fast metabolism and burn through Levadopa quickly. If I exercise in the morning sometimes I barely get 4 hours out of the Rytary even with the supplemental dose. I also find if I wait too long and feel really off, it is difficult for the meds to become effective. I sometimes -- especially in the mornings -- feel a bit buzzed on Rytary but that might be in combo with coffee, which I only drink in the mornings.
I've debated whether switching back to C/L would be better, but I'd probably have to take every 2 hours.
I've had some Dyskinesia with Rytary, so try to balance with a little more or less of the C/L dosages. I had also experimented with lower doses of Rytary--alternating 2 x 95 with 1 x 145, but I had pneumonia end of February and ever since have needed the more consistent, higher dosage of 2 x 95.
I am curious about others' responses to and thoughts on Rytary.
I take a generic C/L 25-100mg with my Rytary. I just couldn’t get going in the morning. I was doing 3 capsule of Rytary then dropped it two capsules and added 1 C/L
my regular doses which is 2 capsules 3 times daily of the 145 mg
stomach emptying timing is more lengthy often in the morning, also effected by pd progression. the pills dont dissolve at the same rate and needed position in the intestines. hang tough.
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