Initial feedback on the brand new (to USA) drug: ISTRADEFYLLINE (Nourianz)

[pdpatient]

I am glad to announce that my initial experience with Nourianz is very encouraging and positive. After multiple drug modifications and titrations and several failed attempts at symptom relief, Nourianz appears to finally work.

I have been on this extremely expensive tiny new drug for 5 weeks now and I feel absolutely normal after the doctor upped my dosage to 40mg from 20 mg. There are only two strengths: 20 mg and 40 mg. But it does a great job of smoothing out the OFF periods which until now have been absolutely intolerable and miserable.

Cost is about $1800 per month without insurance. But insurance approved appeal and the manufacturer does have financial assistance programs. The pills are so tiny that the huge price almost seems suspect 😇

Here is the information:

nourianz.com/?gclid=CjwKCAj...

parkinsonsnewstoday.com/201...

clinicaltrialsarena.com/pro...

michaeljfox.org/news/new-dr...

[ConnieD]

Do you take it just once a day? Thank you 😊

[pdpatient in reply to ConnieD]

Yes, Connie. One pill once a day.

[ConnieD in reply to pdpatient]

Thank you!

[park_bear]

Patient brochure

nourianz.com/assets/pdf/nou...

[MehmetKutlu]

Thanks a lot for reporting your positive experience. That's encouraging!

What I'm dying to learn is: Does it also help for dystonic symptoms? They devastate me.

[pdpatient in reply to MehmetKutlu]

Hi Mehmet. If you can convince your doctor to prescribe it and help you out with the insurance pre-authorization, I would encourage you to try it. It's damn expensive, but it was effective for me after 5 weeks and at the full 40mg dosage. In fact, so much so that I feel completely different as a person now after a long time and I have peace at last! You have no idea what that feels like. When I didn't respond to the initial 20mg dosage, my doctor said that if the 40mg didn't work, the option of last resort was DBS. I am 55 and still have a few more good years left. I have to find something that works for me and this seems to be it.

Just to be clear, I am on a drug cocktail like most of us with a few years into the disease. It's been 8 years since diagnosis. I take Amantadine, Rytary and Requip together. It's interesting to note that it just smooths out the peaks and valleys. The dreaded feeling that I used to get as I approached my next dose is gone now. I can even miss a dose of Rytary and have time to recover. Sometimes, I miss one of the drugs in my cocktail and I don't notice or panic. It's also anxiety reducing for me although that's not a official benefit or effect of the medication.

I have sure that like everything else, the results will vary depending on the person. I am just reporting mine and I wish good luck to those that want to try.

[rescuema in reply to MehmetKutlu]

It definitely could worsen dyskinesia but not so clear on dystonia based on the clinical data. I’d assume it wouldn’t help.

accessdata.fda.gov/drugsatf...

[Speedy24]

Glad to work for you. Didn't work for me ( 20 mg for 12 weeks)

[pdpatient in reply to Speedy24]

Hi Speedy. I gave up on 20mg after 4 weeks. Did you consider the 40mg dose?

[Speedy24 in reply to pdpatient]

Didin't affect your sleep?

[laglag]

Glad you found something that works so well. I'v been taking Gocovri since the middle of January, which is an ER Amantadine. I haven't read your attachments yet but I will because your med sounds similar to what the Gocovri does for me. My dosage of Amantadine was 100 mg , now I take two 68.5

mg pills at bedtime, a total of 137 mg. It smooths out the off times & it also helps the dyskencia. The first week I only took one & felt no difference, but the next week I felt like it was working. And then the middle of last month, I started feeling much better. Similar to what you say, it's almost a normal feeling. The biggest side effect I have with taking it is my balance is not quite as good, but it's not horrible. And when I need to go to the ladies room, I need to go NOW! One other thing, this med is really expensive, "68.5 mg is around $2,761 for a supply of 60 capsules". Because I'm under 65 I get it for & $20/month. They wanted to charge me $200 but I said that's still too much. So they said what about $20 per month & they said ok. Thanks for sending your post, I'll definitely check out the attachments.

Debbie

[pdpatient in reply to laglag]

Hi laglag, if something works for you at any point in time, I would say stop tweaking the medication cocktail. It's so hard to get the right dosage and combination that it's too exhausting. If Gocovri works for you, I would say stick with it. Also, each time we try out a new medication, it take a lot of work to get the insurance to cover. I am no longer shocked at the insane prices for these new medications. The one thing I worry about is what happens if I should lose my insurance which is through my wife's job. I am not old enough for Medicare.

[pdpatient]

I'm going to say that based on my experience for the past three months, this drug is the best deal for me so far. So effective in slowly and steadily improving my quality of life.

I take back my initial reluctance to evangelize the drug. I am one of a few number of people that are taking this drug and I think that more can benefit. It's very expensive and my insurance company covers it. But I would gladly pay the street price and go hungry if I had to!

[jcavana]

Are you still taking it? My mom is going to start it at 20 mg soon. Any advice?

[pdpatient in reply to jcavana]

Yes I am. I'm still grateful for the difference it makes to my day

[Kwinholt]

That’s wonderful! ❤️ K

[JackAubrey]

Hey pdpatient, can we get an update from you again please? Is Nourianz at 40mg a day still working as well for you?

[pdpatient in reply to JackAubrey]

I am glad to report that it is still working well.

[JMSL]

pdpatient,

Like JackAubrey, I'm wondering if Nourianz (40mg) is still working well for you? I have tried almost everything else & have just started taking 20mg Nourianz daily. Thankfully my insurance covers all but $50/month, which is still much more than I pay for other meds but I think I can handle the cost burden, especially if it works!

[Jockboy17 in reply to JMSL]

i took my first dose today and i dont feel very good. anything extended release seems to cause me yucky symtoms, you?

[JMSL in reply to Jockboy17]

I no longer take Nourianz & didn't take it for too long. I don't recall what the issue was (I'll need to check my notes or medical records) but ultimately I did not feel that it was worthwhile.

[pdpatient in reply to JMSL]

I can confirm that Nourianz works very well with Sinemet. Consistent and predictable. Been on it for several years now.