Experiences of return from Rytary to generic CR or IR

[rebtar]

I’d like to hear experiences of switching back from Rytary to regular CR or IR? Why did you switch back?

[Gallowglass]

Hi! I recently switched from IR to Rytary and back again. Rytary is very expensive. I tried it because my ON period with CL had gone down to one hour During OFF periods I cannot drive or exercise due to severe foot dystonia which is relived only by CL when ON. For me Rytary did not extend the ON period. So I went back to IR. My neurologist then suggested adding entcapone to CL, which did extend the ON period about 30 minutes, long enough to get through Rock Steady Boxing class! Entacapone isbexpensive too, not covered by insurance. But worth it. No bad side effects.

[Greylayson]

I had severe dyskinesia so went back to IR carbo dopa

[pdpatient]

After 4 years on Rytary, I went back to Sinemet due to worsening symptoms, loss of speech, increased anxiety etc. I also had frequent freezing episodes which I never had before.

I had a very hard time convincing my doctor to switch back to generic Sinemet. I have never faced so much resistance before. I have also heard similar anecdotal evidence from others in this forum.

[kgold in reply to pdpatient]

How has your transition been? Curious what your Rytary dose was and what your sinemet is now. My husband has been taking Rytary since fall 2020. He was in the hospital over a year ago and the hospital gave him sinemet instead of Rytary. There was absolutely no difference in symptom reduction. He has been having some of the same symptoms that you mention. His new MDS nurse is helping him reduce his dose (if you can you believe he was as high as 4000 mg of Rytary levadopa, down to around 3000 mg now). His nurse is very open to getting him off Rytary and back to sinemet.

[pdpatient in reply to kgold]

@kgold, the dosage was extremely high as much as 5X145mg 4 or 5 times a day which is as much if not higher than what your husband is tapering down from. I was allowed to taper off Rytary in September of 2022 and only now am I coming back to normal. I am now taking between 1000mg to 1200mg of Sinemet (Generic) a day.

The only thing is that it is taking longer than expected to return to normal is my speech. Hopefully, I will be able to speak normally again without stuttering, stammering and festinating (fast rate of speech) all through the day and withdrawing from social interaction.

I have a strong feeling that Amneal Pharmaceuticals has a strong grip on the doctors because I don't know what benefits it really offers over Sinemet IR and Sinemet XR combined . It's just outrageously overpriced and aggressively marketed and hard to wean away from or taper down from or even convince the doctor to allow us to switch from.

I wish you and your husband all the best in your endeavor.

BTW, you hit upon a major flaw in the medication not available at hospital stays. I think that they are behind the advances in Parkinson's medications by at least 20 years. I had the same experience with Stanford University Hospital in 2019. They've no idea about Mucuna Pruriens (MP) either, which is why I switched to generic Sinemet from my initial experience and experiments with MP.

[kgold in reply to pdpatient]

Hi @pdpatient - Thanks for your reply. I honestly didn't think anyone else had such a high dose of Rytary. I'm glad you were able to transition to the sinemet. I will be sharing this with my husband this afternoon.

I agree about Amneal - Since my husband's neurologist was at a large university and both docs he saw there were pushing the Rytary, I figured there probably was some incentive to the neurology department. I could never find any payments from a pharmaceutical company directly to the docs. His first hospitalization was at this same university and that's where they gave him the sinemet - was there 3 weeks. He has been hospitalized for a few other things at a large community hospital. I was allowed to bring his Rytary in to keep things the same.

Ironically, his new MDS nurse is at this same university and is willing to move him over to the sinemet. So, we'll see.

[pdpatient in reply to kgold]

 kgold it would be funny if it wasn't so impactful. I strongly believe that it is partly because of big pharmaceutical incentives either to the department or the individual doctor or the university itself. Proving any nexus will be next to impossible and attempting to do so would be futile and extremely dangerous to ourselves and our future care. It is a very tangled web and attempting to disrupt it can end up making enemies - unwanted and even unwittingly of course.

Murkier of course is the relationship between the pharmaceutical company and the plethora of marketing and distribution companies and the Pharmacy Benefit Managers (PBM) who work with the vast network of pharmacies and the medical insurance companies that are part of the links. If you upset the apple cart, then. "no soup for you" (from Jerry Seinfeld). If a patient's doctor is not going to agree with their request for switching back to generic Sinemet, then it is best for the patient to suck it up and wait for circumstances to hopefully change like it has for your husband. For me, I had to lose my job and after that I had to exhaust all of my options with free supplies and then charity care.

I will dare suggest that one has to think very very careful before going down the Rytary road. It is most likely a one way street!!

[kgold in reply to pdpatient]

Pdpatient - I am so sorry to hear about losing your job over wanting to switch away from Rytary. That's criminal. I hope things have improved for you. It's hard enough having PD but when you can't even get a reasonable standard of care ...

Again, I agree with your sentiment about Big Pharma. Too much influence across many segments of health care. There are a couple of websites where you can check to see how much money pharmaceutical companies have given to doctors. I could find nothing for the doc who raised my husband's Rytary to the 4000 mg (levadopa) level. He was also head of the university neurology department. That's what made me think that he was getting money in other ways, just not directly. As you mentioned, incentives ... When we lived in another city, I also checked his neurologist and she had received about 70K in money from pharmaceutical companies. Disgusting. Dave was steadfast in trying other things, like mucuna. At one appointment she said to him, "Mr. G, why don't you want MY DRUGS!?" She actually said that to him, twice. Yes, "no soup for you." Loved that episode. God help us.

[pmmargo]

im interested in this too because it offers more options to regulate carbadopa. I am getting resistance from my mds who loves the evennness of delivery of rytary. since I take the 245mg I get a lot of carbidopa.

[Godiv in reply to pmmargo]

I hear you. And being dependent on such a ridiculously expensive medication is scary also.

[threezees]

My husband switched from Rytary back to IR after a couple months. Rytary was a disaster for him. He would be out for a walk or even in the home and suddenly be unable to walk and have to drop to the ground. I had to get him an IR to get him moving again. He doesn't freeze or have tremors so that was a new experience. Also it caused panic episodes which his psychiatrist says can happen with Rytary for some people. There was no problem transitioning back to IR. It was a relief. He did add Nourianz after a bit which was a game changer for keeping him "on" longer. (Entacapone didn't work for him - it actually made him a zombie.)

[pdpatient in reply to threezees]

threezees good for your husband. I am also on Nourianz. It's working well so far.

[rebtar]

Thanks for your experiences. I'm going back, taking enough Rytary to stay ON gives me insomnia, and it's to easy to get too much in my system and get very compulsive. I haven't been on a high dose, so going back isn't too hard...

[kaypeeoh]

I was on Sinemet for years. I don't remember why the doc switched me to Rytary. I take 36/145mg two capsules three times a day. Other than the tremor, my only sign is double vision when I forget the next dose of Rytary. Once I swallow the caps the double vision goes away. Technically it's not double vision. I lose convergence, that is my two eyes no longer focus together. For example, when I'm jogging one eye focusses on the path directly ahead while the other eye focusses on bushes off to the left. I had gotten in the habit of taping one eye shut before going an a run. I guess I have good insurance because it pays for the Rytary.