Rytary : Hello all! Curious about anyone... - Cure Parkinson's

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Rytary

MissRita
MissRita

Hello all! Curious about anyone having any feedback on Rytary?

My doctor seems to think that I am not tolerating levodopa/carbidopa very well and we are thinking about switching. Any feedback would be greatly appreciated. Thanks.

35 Replies

Going through the same thing right now. I have been on both. I’m like a golfer constantly tinkering with my golf swing. I’m currently using sinemet but I find that rytary has less up and down and I am now Considering going back to It. I’m sure you already know that it’s a combination of immediate release an extended release.

I haven’t started it yet as I’m still on levodopa carbidopa. So you’re telling me that rytary is a combination of immediate and extended release in one pill?

correct

I don’t know if I could do extended release and immediate release because my intestinal track already gets a beating with what I’m taking now. The actual major issue that I have is that because there is gastric upset in the small and large intestine when I start to get spasmodic in that area that’s when the tremors begin. Additionally if I’m in a nervous situation or have anxiety or in a stressful situation that’s when the tremors begin. Additionally, if I do have any kind of stress no matter what happens the medicine seems to wear off a lot quicker.

Hi Miss Rita:

I think Rytary is good, but it is expensive (unless you have some really good insurance, or are eligible for some form of need-based aid). Note it IS levodopa/carbidopa, containing instantaneous release and extended release"delivery systems".

An alternative is c/l CR.

Note you can create a "poor man's" Rytary by taking c/l CR with c/l IR (eg, half tablet of IR with a half tablet of CR; note these dose amounts are just an example, and may not be the optimum or even suitable for you.)

MissRita
MissRita in reply to Levod

Interesting! Then what makes it different from L/C?

Levod
Levod in reply to MissRita

The patented "delivery system", which encapsulates c/l in different "microbeads" to deliver more c/l over an extended period of time (including instantaneous).

park_bear
park_bear in reply to MissRita

Rytary has got a couple of different modes of long acting levodopa so it does persist longer than Sinemet CR /carbidopa levodopa ER.

So it will give you longer on time, but it will not change the character of the medication. So whatever levodopa is doing for you now, this will do the same only longer.

MissRita
MissRita in reply to park_bear

Ah ok! Good to know! 🙏🏼

My husband used it for about five years. It definitely lasts longer and he tolerated it. He never liked Sinemet so never really took it.

One possible drawback depending on why you are having trouble with the sinemet, is that rytary can stack. Because some amount stays in the system for awhile, the amount in your system can build up to too high levels. So you just need to watch for this.

It is expensive, but not too bad if you have good insurance.

Hi thanks so much for that. I have great insurance so I’m not worried about that. And I think you’re right about the stacking as I’ve read quite a bit about that. Thanks again.

pdpatient
pdpatient in reply to MissRita

@missrita, I had the same experience / problem with Rytary. My MDS figured out a combination of Rytary, Ropinorole and Nourianz along with propranolol to give me a pseudo normal, but satisfied day / most days 🙏

RKM

MissRita
MissRita in reply to pdpatient

Thx!

Pwp0405
Pwp0405 in reply to LeharLover62

I had never heard the term “stacking” before, That’s a great term to describe my experience. Hyper. They are speech. A little out of breath. Insomnia. Hard to shift gears.

MissRita
MissRita in reply to Pwp0405

Yes! I notice that with Mucuna because if you take it for a while it stacks and when I stopped to take a break from it then I noticed it greatly.

I may be an outlier on this one but I found Rytary to be impossibly sensitive to protein in the diet. If I ate protein of any sort, the Rytary wouldn't work for the entire rest of the day! Experimentation revealed that even food containing a fairly small amount of protein, such as pasta, would cause the same problem. And I was taking each dose 2 hours after any such food. The only way it worked was if I ate plain fruit or vegetables, or else just starved myself. Never had this problem with C/L as long as I took it 2 hours after protein food. Back on that now, even though I had switched because of other problems.

pdpatient
pdpatient in reply to Oceangir

@oceangir, you are absolutely not alone. I am in the exact same boat. Read some of my posts 😂

RKM

Oceangir
Oceangir in reply to pdpatient

Thanks! I know you are on a multi-drug cocktail that you have found effective. Have you been able to get around the protein thing, then? I did give up on Rytary entirely because although it worked quite well when I was eating nothing, it went down to 0% effectiveness with protein in my system, even plant protein.

pdpatient
pdpatient in reply to Oceangir

@oceangir, unfortunately, not. I now start my day fasting and ease into fruit and vegetables (deliciously cooked by my wife ) and fruit. Once you accept your limitations as the Lord's / Serenity Prayer says 🙏, you start appreciating what you do have.

I make up for the protein late in the night when I am done for the day. Of course, the moment I do it, I am toast and it's time to sleep it off. Next day morning, it's back to square one 😊.

I am not able to go back to Sinemet because the dyskynesias and dystonias are just terrible. How did you do after you went back?

RKM

Oceangir
Oceangir in reply to pdpatient

@pdpatient, I respect the spirituality of your outlook, but my point of view on all this tends more toward theater of the absurd. I'm just not willing to make those kinds of dietary modifications--I'm a longtime vegetarian (almost 30 years) as it is and eat probably 10 servings of fruit/veg per day, but I eat lots of healthy protein too and am an accomplished cook; that's a big source of pleasure for me. Fasting just does not work for me. Also I'm a night owl who accomplishes most of my work in the wee hours, thus can't save protein for last meal of the day. So, no Rytary for me. As for the c/l, I've started taking it 4x/day instead of 3x as I used to do, and have also added neupro patch 2mg (not sure if that's doing much), and that pacing has improved things a little bit. My problem was severe foot dystonia at dosage time; now with this new dosing schedule it seems to happen only with the last (nighttime) dose and perhaps resolves a bit more quickly. I still don't understand whether it's a function of fluctuation or stacking, and I am now also seeing the c/l waning between doses whereas I never noticed that before. I will see what the neuro says about adding something else in to address the wearing off. The dystonia is miserable when it happens, even though it's less frequent now, and I'm still trying to figure out how to avoid that. On Rytary the dystonia was mostly better but it still did happen occasionally and could still be quite bad.

pdpatient
pdpatient in reply to Oceangir

@oceangir, appreciate your perspective. Yes I do get frustrated sometimes and think about the DBS alternative. I certainly understand your point of view.

RKM

PDancer33
PDancer33 in reply to Oceangir

With you on this!!

When you say you don’t tolerate levodopa carbidopa what do you mean by that? Is it creating symptoms or just doesn’t work?

MissRita
MissRita in reply to LAJ12345

Good question. I’m not sure if I don’t tolerate it as much as the fact that my small intestine and large intestine are not to fond of it. I know that my body does not use it in the right way meaning that most times my body will only keep it for about an hour and a half to two hours before I start to have an off period.

The other issue is that now that I am taking controlled release it is 25/100 and when I take one I feel like most of the time pretty stoned as if I had too much pot. Yet, if I take less it’s not enough. Very frustrating to say the least.

I tried it but it didn’t work for me, it took one hour to work, on period last for one hour again off for 2-3 hours before I was on for 20 minutes before next dose. I started on 4 pills every six hours but that gave me dyskinesia so I was instructed to take 3 pills every six. They are a combination of long and short acting sinemet and entacapone.

Miss Rita, I know people who are on it and just love it. I’m taking it but it’s taken me a while to adjust. I couldn’t stand the regular carbidopa levodopa because I was spending way too much time on either end of taking the pills being off so to speak. I tried the extended release carbidopa levodopa but it just didn’t work for me. I do like the fact that I can take Rytary on an empty stomach and my stomach doesn’t get upset. So I can take it while I’m still in bed before breakfast. I don’t have quite the protein problems that other folks do with it. My doctor said that some people or more bothered by that than others but I still try to be careful just in case.

But like I said other people just love it and some others don’t. I think sometimes it all depends on your doctor too. How flexible they are or how innovative, perhaps?

MissRita
MissRita in reply to Godiv

@godiv To add something to my other post, I tend to tremor more when my small and large intestine are spasmodic and that tells me that the medication is wearing off so therefore, when I get nervous or stressed out etc. that tends to make the medicine wear off much quicker if that makes sense..

Godiv
Godiv in reply to MissRita

Hey Miss Rita. Sorry it took me a bit to reply. I know what you mean. I think when we’re stressed, adrenaline kicks in and so do the tremors. That’s interesting about the feeling in your large and small intestines. I guess that’s a good way to gauge it right? When you need meds?

@Godiv XR took too long to work! Lol I had to wait 2 or more hours. I tried CR as of yesterday and that hits within 20-30 minutes, but it wears off in 1.5/2 hours hence the need for Rasagiline that I’m trying tomorrow.

Interestingly enough I know that the L/C is very similar to Mucuna and I took that from 2016 until the beginning of this year and had to stop because I had projectile vomiting and stomach issues so bad that they thought I had gastroparesis but testing came out negative. I have a feeling that they’re both similar and that’s why I have some of the issues I have gas strictly with L/C.

I like the fact the Rytary is doable on an empty stomach.

I get a little bit discouraged because it seems as on my body is very sensitive to medications and I think that has to do with my slow digestive tract and for the fact that I have Hashimoto’s.

My doctor is pretty flexible and we’re slowly trying other things. I’m in New York and although my neurologist is local I am seeing the PD department at Strong Memorial in Rochester in May to get an additional opinion and not so much a second opinion but an additional opinion on current medications why things are working why they’re not working etc.

Godiv
Godiv in reply to MissRita

I had the same thing happened with the regular carbidopa levodopa like you said. It hit me quickly and then was gone. I just felt like I was spending more time just waiting for it to kick in after I took the next pill. I tried the extended release CL and I didn’t have good luck with it although I wonder now if it wasn’t enough. I think I have similar issues with sensitivities to these medications. And even with the Rytary It’s not perfect. And in fact yesterday I felt horrible and was thinking why did I tell Miss Rita it to try it lol? But I think it was because I exercised close to dosages. For some reason that gets me every time and can ruin my day. Now I did want to tell you to it does sometimes cause heartburn. Sometimes it take it with Ginger ale or crackers or nothing. Depending on how I feel. This morning I took it while I was in bed and I just used water and I was fine I think probably the other things I imbibe cause some of the heartburn like coffee and stuff like that. I just have never found anything that is totally satisfactory or doesn’t cause a side effect. I know that’s the nature of the illness too, But I’m still waiting for my honeymoon period. It just seems like I didn’t get it. It sounds like with the mucuna people have problems due to it not having carbidopa with it to do away with the nausea. But I’m sorry you went through that. I think it’s a great idea to get a second opinion I’d like to myself. But at the moment I just don’t feel good enough to even deal with it. So I think you might like the Rytary but know that it’s not perfect. I still think it does better for me than CL. I do have a little dyskinesia but is gradually gotten better and I was going to experiment with gocovri To see if that would help. Oh my gosh this is so confusing and crazy!

I don’t know if I could do extended release and immediate release because my intestinal track already gets a beating with what I’m taking now. The actual major issue that I have is that because there is gastric upset in the small and large intestine when I start to get spasmodic in that area that’s when the tremors begin. Additionally if I’m in a nervous situation or have anxiety or in a stressful situation that’s when the tremors begin. Additionally, if I do have any kind of stress no matter what happens the medicine seems to wear off a lot quicker.

Godiv
Godiv in reply to MissRita

I misread I am so sorry. I see what you mean when you’re anxious, it wears off faster. I think you’re right about that. I have experienced that too and I think that’s also the problem with exercising near a dose. It seems to obliterate the meds somehow.

I take Rytary and have taken it for 4 years now. I am not a med person and before PD diagnosis (hard to believe, 9 years ago) I took no meds, barely even a Tylenol and only for a very bad headache. I have tried to limit as much as possible and am wary of trying new meds. I take Azilect, 4 mg Neupro patch (I think the lowest dose with any affect on PD), and 190 mg Rytary - 4x a day, which is a pretty low dose. I supplement with half C/L between Rytary doses, sometimes twice if needed, and also one around 4-5 am when I wake up as I started having morning dystonia. I am very sensitive to meds. Even at this low dose of Rytary, I sometimes feel high, as someone mentioned, especially with the first am dose. I drink coffee and suspect that may factor in, but am not willing to give that up. But meds have become unpredictable for me, and some mornings that same Rytary dose fails to kick in at all. I feel I am always straddling the fence between not enough (so that I move slowly and stiffly) and dyskinesia-inducing. The C/L gives me some level of control.

I am one of those people who exercise zaps their entire dopamine supply. After walking, I am generally spent, slow moving, and very off. Also sensitive to protein. I seem to tolerate nuts and beans (love hummus for lunch) and even some cheese, but eat a hard boiled egg for breakfast or lunch, which I used to love, or any animal protein and sometimes the levodopa in either med doesn't kick in for the rest of the day. I eat most my protein at dinner. We cook a lot and I love food. For me, eating gluten-free has been good.

The disease sucks; there's no way around it. But with practice and work, it becomes tolerable. Through meditation and mindfulness and yoga, I've become very attune to my body. I can feel the meds begin to wear off and try to address as soon as I can with another med dose as I've found if I get too off, it takes longer for the next dose to kick in and and sometimes is not as effective. I take the meds on a pretty regular time basis, as my neurologist says works best that way, but my first two doses of the day may be 4 hours apart and later ones 4.5 to 5 hours apart.

The meditation has also helped with the anxiety you note in response to your tremors returning. Anxiety and stress completely zap my dopamine as well. I try to remember it's an impermanent state; the meds will kick in eventually. The only other thing I'll mention is to give the new meds a month or two for your body to adjust to and don't make multiple med adjustments and changes too close together. Everything about this disease requires patience (I cannot believe sometimes how long it takes me to do some tasks), and getting the meds right can take some time.

Hope some of my experience helps.

ParlePark
ParlePark in reply to PDGal4

Thanks and excellent advice.

Godiv
Godiv in reply to PDGal4

I was just talking about exercise and dopamine. I’m the same way: if I exercise in the morning, I’m just shot for the day. I’ve been trying to just do gentle stretching for now. But anything that you know zippier Makes me crash almost like a sugar crash or some thing. Very good for you that you’re doing meditation and yoga etc. I admire you for doing that and I’m trying to do some meditation and I add some yoga or tai chi.

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