Rytary and Bydureon updates

I have posted about this in the past six months and wanted to give an update.

I started Rytary about 6 months ago and struggled to find a way to control my symptoms. It is a slow acting form of Carbidopa and Levodopa that is a controlled release capsule. I said “slow acting” because it takes a while to work it’s way through the system in the morning. However, once it does, the results are amazing.

Bydureon is Exenatide that is in advanced phase trials for effectiveness against Parkinson’s progression and existing symptoms. It is a drug (injection) that is prescribed for diabetes. It is injected once every 7 days.

The hope is that this can be repurposed to help Parkinson’s patients. I am already diabetic, so I brought this up with my doctors who strongly appealed for coverage from the insurance company and presented the trial results. The insurance company was convinced and approved the coverage. I feel better on the Bydureon and can feel the effect that it has on my body by the way it wears off during the week.

The issue of course is the cost of these medications. $1000 each per month without insurance!! Insane.

[KERRINGTON]

Hope it continues working for you !

[laglag]

I haven't used this source because my insurance is adequate, but a lot of people have said the meds are a lot cheaper. Check out this website: goodrx.com/save

It says on the card that you can use GoodRx instead of insurance or Medicare but cannot be combined with any federal or state funded programs such as Medicare this is not insurance. Hope this helps.

[Hidden in reply to laglag]

Yes, laglag, you are right. I have used this site/app before and it is very useful and gets you a good discount. I do have insurance coverage through my wife’s work now. I am just worried about the dependency on the job and the particular insurance. If for any reason, we have to switch coverage or lose it - God Forbid, it could be a problem.

It took a lot of work for my doctors to convince the insurance company to provide coverage for the expensive drugs. If you change insurance, then you have to start all over again. If you lose insurance, it is a game changer.

However, I heard that there are options. There are a few charity care institutions that provide month to month help with the cost. I have not tried them though.

[luba1]

Hi, Do you have any dyskinesia from rotary? If you do what did you take? I am asking , because when I ask my doctor about rotary she reply to mr “ do you want more dyskinesia ?” Which I really hated. Thank you very much!

[Hidden in reply to luba1]

Yes I do. Easily resolved by taking less at the next dose. I have a great doctor who is willing to work with me to adjust doses. It takes about six months to properly calibrate.

[luba1 in reply to Hidden]

Thank you very much for such a quick response! What else did you take besides rotary? I just started to take gabapentin ! No results yet. I take Sinemet every 2 hours including night time. I am shaking like a leaf!

[Hidden in reply to luba1]

Nothing else now. I used to take Sinemet before. It took me a long time to learn to differentiate between dyskinesia and tremors. I think what you are experiencing is dyskinesia. So, what I learned to do was to skip the next dose and it went away.

Now, with Rytary, I don’t have to skip entirely. I just reduce my dose which is easy to do because one dose has several capsules.

[PD_Partner in reply to Hidden]

Can you explain how you distinguish tremors from dyskinesia? My spouse is on Rytary for a year now but seems to have left hand tremors most of the time. Dose recently increased to 4 capsules 3xday from 3 capsules. He was having a lot of hip pains, and between dose was having more issues so dr increased dose. This did help pain issues but still the left hand tremors and seems more nausea.

[Hidden in reply to PD_Partner]

It was really hard to differentiate at first. Most people refer to Michael J Fox’s swaying motions and conclude that it is the only indication of dyskinesia. I discovered that dyskinesia can manifest itself in many ways. Here is my experience:

If the tremors are so bad that my entire body is shaking, then it is dyskinesia. My doctor said that Parkinson’s progresses very slowly, so tremors all over the body won’t manifest for quite a while.

Unfortunately, there is another condition called dystonia that Parkinson’s patients also experience. So, it becomes even more confusing. Dystonia manifests itself as the curling of toe for Instance.

I go by very broad parameters: too much Sinemet can cause dyskinesia and too little can cause dystonia. The intensity and amplitude of the tremors can also give a clue. Too rapid and large swings of the extremities is more indicative of dyskinesia. Slow movement accompanied by slow, rhythmic tremors and curling of toes, neck etc., is all indication of dystonia.

Hope this helps.

[ConnieD in reply to luba1]

I personally didn’t do well on Rytary. My dyskinesia seemed worse. I lost weight. It took longer to work. I didn’t feel well on it, just my experience. I took it for 2 years

[PDGal4 in reply to ConnieD]

Did you go back to sinemet?

[ConnieD in reply to PDGal4]

Yes

[luba1]

Thank you very much! At least some hope!!!

[Hidden in reply to luba1]

You are most welcome.

[hindle1245]

Good morning, did you feel a bit dizzy when taking the rytery , I tried it for 2 weeks and was a bit concerned, I called my doctor but there not much help , that’s why I tern to the public for there experiences

I also have a dbs unit in my head to control my right side and it’s doing good but it’s the left side that needs the meds and my righting on my right side is still bad Thanks for your help.

[Hidden in reply to hindle1245]

Good morning. No I don’t. Call the Rytary phone line as the next step. Truth be told, Rytary is still a mystery to most doctors.

[backtowork]

Greetings..diagnosed with PD about 10 years ago(I'm 67) I too have been on Rytary 36.25-145 almost 2 years ..2 tabs at a time every 3 hours 5 times a day works best for me..tried many different ways to take ...same thing slow start..if I have to get going I take a tab of carbidopa levodopa 25/100 for a jump start...also have C/L 25/100 ER if I have a long day and have trouble sleeping...keeps me pretty even keel most of the time, but I seem to have about 2-3 days in a row that nothing seems to work right..don't get much done then..happy to survive..

[Hidden in reply to backtowork]

Think always in terms of “ I am luckier than the other guy” and you will do well. I am 55 and diagnosed at 48. A high school classmate of mine died at 48! A few other friends from high school died earlier. One really close friend died at age 19 after an adverse reaction to penicillin. I think I am lucky to be alive with a manageable problem.

From my perspective, you are luckier than me. What do you think? It helps to put things in perspective, doesn’t it?

[hindle1245 in reply to Hidden]

Yes it does and sometimes talking to someone else about this stuff helps.

I just Had a close friend die of ALS so I thank the stars that I only have PD

Thanks again pj

[Tmarsella]

Do you still take RYTARY and what strength and times daily?

[Hidden in reply to Tmarsella]

Yes, I do. Bydureon provides substantial benefits, but for now, it only works for a week at a time. Symptoms are better controlled during the beginning of the week as open to the end. The injections are weekly.

I start off the day with 3 capsules of 245 mg for a first dose only. This helps overcome the slow start of the first dose of the day. My next dose is after 3 hours. I take 1 capsule of the 245 and 3 capsules of the 145 mg. My next 3 doses are 4 hours apart.

[Parky-in-Italy]

Yes, Rytary is an interesting drug, approved by FDA in 2016 and never distributed in Europe, Approved ironically by UK and Turkey, but never imported. Why , probably as you stated . It costs 8 times more than Sinemt. per day.

Our centre got some through our connections in USA, and found translating normal dosage to Rytary not so easy but once done, it really is effective, especially against on off.

I am trying to get diabets so I can get Exenatide!!! But it is just coming out of stage 3 trial so maybe will be approved. BUT will it ever be imported to Euurope!!!!

Alex

European Parkinson Therapy Centre

[Hidden in reply to Parky-in-Italy]

LOL (your comment on diabetes).

[Prakash1]

Can I call you to discuss this in more detail, thanks. Prakash

[Hidden in reply to Prakash1]

Sure. Private message me and we can set up a time to talk. I am in California.