Rytary the second time.: I am trying Rytary... - Cure Parkinson's

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Rytary the second time.

Bailey_Texas profile image
12 Replies

I am trying Rytary again. It has been a week now and I am have not had his much pain and off time ever before. I am taking 2 61.25/245 caps every 4 hours which is I believe the largest dose allowed.

It has worked for 4 hours or 1 or 2 or 3 or not at all. It is not for me. I was consistent with what I ate when i took it and i did work for me.

Also the price ($1400 a month ) which my ins does not pay any of.

So back to 25/100 ir for me.

The picture below is my new home not the house but the metal building. My son and his family live in the house.

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Bailey_Texas profile image
Bailey_Texas
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12 Replies
racerCP profile image
racerCP

Hi Bailey,I have been missing you and your posts.

How are you doing generally? Any new projects???

Bailey_Texas profile image
Bailey_Texas in reply to racerCP

only my new home

Bailey_Texas profile image
Bailey_Texas in reply to racerCP

I am doing good no major complaints just getting older but not much slower. I still work out in my shop most days just keeping busy and off my wife's radar. Just kidding we love spending time together just like all of our 50 years together. We tied the knot 50 years ago on Feb 01/971.

Astra7 profile image
Astra7

Do you have a drone?

Bailey_Texas profile image
Bailey_Texas in reply to Astra7

yes but my old boss took this picture with his.

Jmwg45 profile image
Jmwg45

$1400 per month for one med! Like everyone in the UK I am so thankful for 'socialist' medicine here. I know people who moan they have to pay £11 per month which covers all our prescriptions because PD doesn't qualify for free prescription like some conditions, although when you reach 60 they become free.

I wish you luck getting something that works.

Bailey_Texas profile image
Bailey_Texas in reply to Jmwg45

Will they pay for any meds you choose to take. By the way you have paid for all your meds only over the years in the form of tax . There is no free lunch any where we just pay for in different ways.

i pay about $200 a year month for insurance that pays 100 percent of my medical and $20 a month for meds but they don't cover Rytary because there are other meds that will do the same thing for a lot cheaper.

Jmwg45 profile image
Jmwg45

You are quite right about someone needing to pay, but as the UK spend less than half of what the US spends per head of population and has a higher life expectancy I'm happy we get the better deal.

Your policy does sound like a really good deal though and sounds pretty comprehensive.

I can pretty much have any med that has been approved by 'NICE' (National Institute for Health and Care Excellence) and as long as my care team agree. I can email my Parkinson's nurse anytime and say if I'm struggling and they are happy for me to recommend the route I want to take or to guide me.

I have recently been struggling with what feels like drug induced pain from Sastravi 200 (200mg levodopa, 50mg carbidopa , 200mg entacapone) which I think is a form of dyskinesia (off my meds the pain in my neck and shoulders subsides considerably). I asked about going back to Sinemet (100/25 and 50/12.5's) which would allow me to manage the dose better (you can't split Sastravi) and adding in opicapone. It took about 4 days from email to having the meds.

If these don't work they can try others and if there is anything I want to try they're normally amenable as long as NICE has approved it's use for Parkinson's and my team see clinical need and the cheaper options are not working effectively or are not appropriate.

Our system has it's problems too, but they are the same problems whoever you are for chronic and emergency care. Private healthcare allows better access for acute medical problems though (faster access for operations, mental heath issues etc). I would like to explore FUS PTT but it's not done in the UK so either I pay myself or have DBS. And paying myself isn't in my mind set (or most Europeans) so it's probably a harder decision to make than were I more used to the notion.

And the buying power of the NHS plus not for profit hospitals mean most drugs and surgeries are many times lower that the cost in the US. A knee replacement costs the NHS about $9000 and the patient nothing where in the USA the average cost is about $35000 which the patient normally ends up paying at least some of, if not all depending upon cover.

There is a reason only one major developed country in the world has 'capitalists' medicine although are happy with socialist policing!

Buckholt profile image
Buckholt in reply to Jmwg45

Yes USA happy to have socialized police, education, libraries, defence, fire dept, roads etc but not health.?

kgold profile image
kgold

My husband started Rytary a few months ago. His insurance is Humana Medicare Advantage. He pays $100/month for 300 pills. It gets a little weird after that as the RX was written for 360 pills. He gets his RX filled at Costco. He does a little better on it than IR Sinemet.

Bailey_Texas profile image
Bailey_Texas in reply to kgold

Thanks can not use Rytary to many side efects

kgold profile image
kgold in reply to Bailey_Texas

Sorry to hear. Good luck with finding what works.

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