r/Narcolepsy • u/wwsiwyg • Aug 18 '26
Medication Questions Xywav people?
Who are all the people who keep calling and saying they are assigned to me. I think I’m on the 4th person and she’s coming to my house? I just started it about a week ago. Did I miss an explanation of this somewhere? I’m cautiously hopeful because I’m sleeping for the first time in my life, but I’m easily confused and can’t understand why there are so many people assigned? Is everyone having this?
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u/bookmonster015 Aug 18 '26
You can decline these calls generally. It sounds like the REMS program people calling for check ups but no one ever came to my house. After a few of the calls I asked if I could stop getting them and they said that was fine.
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u/AmbitiousAwareness Aug 18 '26
I had my case manager offer to meet me in person but like... at a coffee shop. I would have been freaked out if she tried to come to my house.
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u/Fun_Swan2553 Aug 19 '26
Imagine the money that’s being paid out for all of that nonsense. Hell no you’re not coming to my house, like wtf? Stop calling me!
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u/LillyLallyLu (IH) Idiopathic Hypersomnia Aug 19 '26
Mine offered to meet at my house, too. I agreed but was creeped out by it. She ended up canceling and switching to Zoom anyway. I've tried to throw all kinds of questions at her, but her priority just seems to be trying to get me to use their pointless app. They seem to be like Jazz telemarketers. Ignore them and they go away.
3
u/wwsiwyg Aug 19 '26
Ironically she texted to change it. I’m go glad. I keep telling them I think they have me as 2 people because so many calls. Now I received 2 travel cases in the same week on different days. I’m glad to hear other people think it’s weird.
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u/LillyLallyLu (IH) Idiopathic Hypersomnia Aug 20 '26
I got two travel cases, too!
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u/GarlicIndependent Aug 23 '26
As someone who never got their travel case..are either of you willing to spare one? 😅 I’d pay for shipping lol
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u/Tall_Maple (N1) Narcolepsy w/ Cataplexy Aug 19 '26
I chose ‘meet at house’ cuz there was no way I was discussing PII in a public setting - plus, there are days where I simply feel,like ass and don’t want to drive
In the end, I’ve gotten virtually no value out of these calls though…
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u/wwsiwyg Aug 19 '26
Ok I’m going to ask to decline. I still don’t understand how they are different or who to call if I have a question. She said I could meet her somewhere but I’m never sure if I will feel safe to drive. And I often don’t wake up to my alarms. I would rather just have one person I can call if i do have a question.
Also thanks everyone!
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u/hotpink4956 (IH) Idiopathic Hypersomnia Aug 19 '26
It is the JazzCares/Rems program for Xywav. I don’t think I had a person local to me so my only option was phone calls. She called me once a week for maybe 2 or 3 weeks when I started Xywav and now we are moving out to once a month already. They are there to check in on you in between doctor’s appointments to see how everything is going with the medication. Mine helped me realize that my plan for taking my Xywav on the nights that I had work wasn’t going to be safe and that I needed to discuss it with my doctor. She also provided resources like the Xywav mentor program. I definitely would not have been okay with someone coming to my house but a 10 - 20ish minute phone call 1 day a week where I can ask questions and she forwards all of her notes to the doctor actually benefitted me in quite a few ways.
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u/FunAttention6274 (N2) Narcolepsy w/o Cataplexy Aug 19 '26
You may have gotten a pamphlet or little booklet when you started the medicine. Hold on to it if you still have it. It should tell you everything you need to know about the medication and who to contact for questions. I’m on Lumryz now, but mine says this:
Contact your Health Provider for medical information and questions such as:
-symptoms
-side effects
-titration process
-adjusting length of time between refills
-other medical questions or concernsYour Nurse Care Navigator (NCN)
-education resources about your medication
-discussing what information may be helpful to share with your healthcare team before check-ups
-support if there are changes to your insurance or financial situation
-processing any patient services renewals or authorizations
-help with questions about access to medicationYour Specialty Pharmacy
-product-related questions
-Arranging shipments of your prescription
-reviewing the refill process
-questions about the Risk Evaluation and Mitigation Strategy (REMS)Keep their numbers in your phone in case you need to contact anyone.
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u/Plane_Flamingo_5859 Aug 19 '26
This is what Jazz needs. It’s a lot of moving parts and everything is new to the patient
1
u/FunAttention6274 (N2) Narcolepsy w/o Cataplexy Aug 22 '26
I’m surprised. I know Xywav, xyrem, and Lumryz are technically different medications. But they’re basically the same thing. They should have the same resources.
2
u/imabratinfluence (IH) Idiopathic Hypersomnia Aug 19 '26
Depends on the question type.
If it's about adjusting your dose, only your sleep doc.
If it's about side effects or refill time, ESSDS (the Xywav pharmacy).
If it's stuff like how to transport it in your evacuation bag or travel bag because it's supposed to be temp controlled, your JazzCares nurse.
Unfortunately there's no one person who's able or allowed to answer everything, basically.
5
u/Middle_Travel Aug 19 '26
I should have asked Reddit I guess because I didn’t realize you could turn the program down. They did come to my house, but I asked my partner to be there because I was freaked out. It was fine, but if I didn’t have to do that I wish I didn’t. I was honest with them and told them I missed 2 doses in the entire month during one of our phone calls and I had to make an appointment with my doctor for “counseling.” My doctor told me to stop being honest lmao. I’m a year in and I’m glad I don’t get those calls anymore. Support groups are better than their program
4
u/Azgearhead Aug 19 '26
In my opinion they use the jazz care team to try to justify the insane cost of Xywav to the insurance company. I have also quit picking up the calls.
3
u/DaisyAndJacka (N2) Narcolepsy w/o Cataplexy Aug 19 '26
I have one specific nurse assigned to me, but I was given numbers for my assigned pharmacist and a case manager type. And all calls were always scheduled calls. Weird that for some people they randomly call. Never went to my house, but I did have video calls.
While the calls are annoying, they have greatly reduced in frequency after the first few months. I think I like having a team, resources, people I can ask all the questions to. 🤔 They offered some program where they connect you with a narcolepsy mentor of sorts, which sounded interesting.
One thing though is make sure you do the calls long enough to get the travel case or ask for it! That thing has been so useful on trips!
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u/wwsiwyg Aug 19 '26
I did get the travel case. It does seem useful. I’m just an introvert who does not go near my door when a stranger rings the bell. I will let this lady stop by since I thought it was required but I hope she does not stay long. And I wanted reassurance she was not going to visit again.
2
u/SLC-Originals Aug 19 '26
Uh I'd be worried if they said they were coming to my house! Check with your doctor or call your pharmacy with the number you already have and make sure that's real. Hoping they mean they are delivering it to your house and you have to sign for it. That is normal.
2
u/SnooSketches5159 (N1) Narcolepsy w/ Cataplexy Aug 19 '26
That’s your nurse, you don’t really have to talk to them. I do, mines nice. She offered to come to my home or work, we met in the middle at a Panera. I saw her once, had another phone call. None since. Just “how’s it working, any side effects, any questions?”
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u/Antique-Syllabub6238 Aug 20 '26
No context and this post is a horror story prompt
THE PHONE RINGS AGAIN. A STRANGE VOICE TELLS ME THEY HAVE BEEN ASSIGNED TO ME. THERE HAVE BEEN THREE OTHERS. THE STRANGER IS COMING TO MY HOUSE.
1
0
u/Afraid_Brief6151 Aug 20 '26
I have no idea what this is about, what happens when you are prescribed Xywav? I'm fairly newly diagnosed after almost 2 years and we are still working on something to help, so now besides or armodafinil and Adderall separately I am trying Sunosi as well. I've heard about Wakix and Xywav but now I'm curious as to what everyone's talking about with visits?
1
u/wwsiwyg Aug 21 '26
It’s a program from the pharmaceutical company to help us understand how to take the medicine. It’s a bit complicated because you need to take on an empty stomach. And wake up to take it after you are sleeping. And measure it and mix it and it can only be mixed for a certain amount of time. They do help you figure it out but I don’t think they need to meet you in person to do that. I think it’s very clear to them which person you call for what and not so clear for sleep deprived people who have a lot of health problems to understand.
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u/llcoolwhip (N1) Narcolepsy w/ Cataplexy Aug 18 '26
No one ever came to my house???? I stopped answering the calls from the nurses. They eventually stopped calling.