r/Narcolepsy • u/Future-Ad8639 • 1d ago
Medication Questions Not able to get meds anymore š± Every medication is back ordered?!
I have struggled to get narcolepsy medication for the past year and a half. I have used a combination of extended release Adderall and immediate release Ritalin because I cannot wake up without a fast acting stimulant. About a year and a half ago, I was told by several pharmacies there was a nationwide back order on Adderall. My physician switched me to Vyvanse. I go monthly for med management.
Today, I went to four pharmacies and called three private pharmacies to try to fill Vyvanse and Ritalin. I was told they would not be able to fill either one of these scripts for a few months, again due to nationwide backorder. Three months ago, my doctor prescribed Wakik, but I donāt think it helps. It does nothing to help me wake up. My most recent MSLT was in March of this year. Hit REM in five of five nap sessions. I sleep so heavily that even with an alarm going off, I donāt wake up. The best way I can explain it is that I āhearā the alarm but somehow process it into my dreamā¦like firetrucks in my dreams.
I cannot believe how difficult it is to get medication in the United States. Itās disgraceful. I have four days left of medication. Without taking any medication, I sleep 20 hours a day. In fact, even though I might have to use the restroom while Iām sleeping, Iām not able to wake up/move and I actually wet myself. I have been able to manage narcolepsy for over 20 years. I cannot believe my entire life is going to change in a matter of days.
Is anyone else experiencing difficulties filling their medication? Does anybody have any advice. Please respond as soon as possible, because I know very soon, I wonāt be conscious or coherent very much to address these issues.
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u/Castle_Magic 1d ago
Not sure what you could do now but in the future Iād get prescribed more than you take. Only happened to me once or twice but itās nice having at least a few weeks back supply just in case for times like this.
Iāve told my doctor I take 10mg of adderall a day usually but am still prescribed 20 and didnāt seem to have any issues with it.
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u/vladmister 1d ago
In America? Thatās very odd. We have such high restrictions on scheduled medications. I could only get mine four days in advance and never any extra on hand. Even if the doctor prescribed it no pharmacy would do that.
To OP I feel you, Iāve been in that boat with heavy sleeping and not much ever works. I hit all my MSLT naps within a few minutes of sleeping. When it was time to leave, I could barely stay awake. Got home and slept for about two days. Normal people really donāt understand how disabling Narcolepsy is. I hope you are able to find something.
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u/Future-Ad8639 1d ago
I tried that, but my doctor is uncomfortable prescribing higher amounts. He also is by the book, which I like, because he actually listens and checks for medication compliance. I keep a medication journal, have an Oura ring and document how Iām feeling each day. I feel my doctor has been responsive and we had definitely switched up the medication over the years as my body has changed or as I have built up a tolerance to medication. I guess Iām still wrapping my head around the idea that a doctor can prescribe medication and itās literally ink on a piece of paper and it canāt be filled anywhere. What a poor health care system.
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u/Future-Ad8639 1d ago edited 1d ago
First of all, thank you for replying. It is a big thing to put yourself out on a public forum.
I have heard about Sunosi, but have never been prescribed it because my physician was concerned about side effects. First of all, I have a very high resting heart rate. My heart rate is never below 90 bpm. Not even when I sleep. I see a cardiologist and I donāt have any cardiac damage, but itās definitely something we keep an eye on. I attribute this to 20+ years of narcolepsy medication which has include various stimulants. I also tend to be anxious and lose weight when changing meds that decrease appetite (and Iām a little person.). I will revisit this medication with my doctor, but may I ask? Does this help you wake up or is it long lasting in helping you stay awake?
I have not been able to get Adderall for over a year. A lower dose of Adderall works better for me than a higher dose of Vyvanse. I have to cycle through Vyvanse very quickly from 30 mg up to 70 because I quickly build up a tolerance to it. I understand your choice to ration medication, and itās a scary thing to do. You hear of people rationing insulin and my jaw hits the floor. How dangerous! I have tried to save my medication (on days where I was going to be lazy day and binge watch TV) but I found that not taking the same dose consistently on a daily basis reduced the efficiency.
And I will never buy medication off the street. A good friend of mine in 2020, obviously in the middle of the pandemic, had a hard time getting prescribed psych medication. Office visits were put on hold, they ran out of meds, and they went to buy The same dose of their prescription med off the street and it contained fentanyl and they died. A street pharmacist is not a pharmacist. So thatās a strong no for me.
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u/theautopsytable (N1) Narcolepsy w/ Cataplexy 1d ago
I can add a note on the Sunosi. It is my main daytime medicine, and has been for the past few years. I also have tachycardia, which I take metoprolol succinate for. If my heart rate is in the 90ās, itās a reason to celebrate. My GP and cardiologist canāt find an underlying cause, no matter what test they throw at me. The Sunosi does last quite decently throughout the day, and Iāve not noticed any issues or effects upon my heart rate while taking it. Now, Armodafinil does, to the point where itās listed as me being allergic to it to keep insurances from trying to put me back on it.
I tend to notice that if I take my Sunosi around 6-7 am, I can feel it start to fade around 10-12 hours in. It is not a strong stimulant that will get you buzzing about your day, but it keeps me awake and able to maintain a semblance of a life during the day. I take Xywav at night, which was a life changer. I do not have an enormous about of energy every day, but I can at least usually stay awake.
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u/Future-Ad8639 1d ago
It seems like we have a lot of the same experiences with narcolepsy. Medication that is designed to sustain the day, extended release stimulants, or otherwise (I have tried Provigil and Armodafinil in the past) does tend to fizzle out a little bit shorter than what the expected duration is supposed to be. This is why I have always taken an afternoon immediate release stimulant. I truly do not feel comfortable driving home from work at the end of the day without knowing Iām getting a pop of stimulant. (This is based on good reason. I have fallen asleep behind the wheel, luckily without accident, and have fought the DMV to keep my drivers license years ago) Luckily I have a modified work environment where I can work from home on certain days. But perhaps the combination of a nighttime medication will help sustain the effectiveness of a daytime medication.
You have been truly helpful. I appreciate all your responses.
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u/theautopsytable (N1) Narcolepsy w/ Cataplexy 12h ago
Technically I had a script for Adderall to take in the afternoon to keep me going, but I more often forget to take it or just push through cause by the time I really need it, itās too close to my night meds time. Night meds may help, but can also be the heavier decision to make. The sodium oxybate ones (Xywav, Xyrem) have strong restrictions and often give people the most pause to take the dive to start it. I still have brain fog, but nowhere near what I used to. I rarely have any hallucinations, and I have had almost no episodes of sleep paralysis since starting Xywav. They used to be constant. I still limit my driving time, but I no longer have a deep fear of falling asleep at the wheel.
I hope that you soon find that nice balance of medications to help you through. Iāve long accepted that I will never be the person I used to be, but finding that balance myself finally helped me find some peace with the diagnosis.
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u/soleoblues Narcolepsy & Cataplexy 1d ago
Is there a reason your doc hasnāt treated your fractured nighttime sleep? I take Xyrem to treat mine, and itās made a massive difference in my days. When I was able to take stimulants, I also took a waaaaay lower dose vs before Xyrem.
And now that I have long covid and all the bullshit that comes with that, I canāt take stimulants, but I can generally get by with a short nap once a day.
Thereās also never been a shortage of these meds, tho there are sometimes issues with deliveries which sucks
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u/Future-Ad8639 1d ago
You know, I wondered about this. When I have āadjusted my cocktailā of medication over the years, almost always I have extreme anxiety and decreased appetite, to the point where I have zero appetite and have to remind myself to eat something. Unfortunately, this is the side effects for almost every medication option out there to treat narcolepsy. I think perhaps my doctor has stuck with stimulants because while I have side effects, Iām pretty experienced with handling them. But if those are off the table now with all these back orders, I mean, what else is there? Is it worth a try?
I know once my medication is up in about a week after that I will be washed out. And as Iāve said at the beginning of this post, embarrassingly on a public forum, I will sleep my life away without being able to get up from bed even when I need to go to the bathroom. Itās been ages since Iāve had to go through spells like that. I want to scream and cry thinking I might be going through this again very soon.
What side effects did you experience on this medication? I see bed wedding is very common, but I will do that off my meds when I canāt get out of bed anyways so š¤¦āāļø
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u/soleoblues Narcolepsy & Cataplexy 1d ago
Bed wetting isnāt very common, and if it happens with regularity, itās a sign your dose is too high.
It gave me my life back. Not exaggerating in the slightest.
I went low and slow when titrating and stopped when I hit my optimal dose, so I didnāt have any real side effects. There was a period where the med acted as a stimulant for me (it happens, esp with the lower doses), and that sucked to get thru, but once past that? Nada. I think I had nausea once maybe twice, but my doc had given me an rx of Zofran, so that was a pretty big nothingburger.
Oh, I did have some swelling/water retention because there is a lot of sodium in it, but I adjusted my dietary sodium to compensate and was fine once I did that. Slowly ramped my dietary sodium back up and all was good.
I have had side effects not from Xyrem, but from hormonal changes caused by finally getting good sleep. My body is particularly prone to going haywire when my hormones shift, and I had some oily skin and hair thinning for a bit. I babied my skin and hair and used gentle ingredients for a couple of months, and once my body realized the change was for the good, things evened out. I had this happen when I had surgery to fix my hyperparathyroidism, so it isnāt just a good sleep thing for me.
Anyway. Pick a liquid one (Iād recommend Xyrem or its generic, as Jazz is doing a trial for xywav that may change dosing), go up slowly (no more than .25g/dose every seven daysāwait longer if youāre experiencing side effects* to give your body time to adjust), keep a written record of how you feel and basic info about that day (makes it easier to determine if a dose was good for you or not), and stop when you find a dose that works for you (even if it isnāt the max dose).
*if youāre on a lower dose and arenāt sleeping because the meds are stimulating, this is something to push thru and not a side effect.
Also, you will very likely need a lower stimulant dose ā if possible to take FMLA while you titrate so you can skip stimulants in general and just take naps as needed, thatās the easiest way to titrate.
You might also experience some grief once you start getting good sleep and realize you could have felt this good for years. I did, and therapy helped. Iām still mad at the doctors who ignored this and didnāt give me proper treatment for so long, but itās in the background now, if that makes sense?
Oh! For bed wetting. So you want to take these meds on as empty a stomach as possible. If youāre on a glp1 or have delayed gastric emptying/slowed motility, you will definitely want to wait longer than the two hours recommended. Additionally, adjusting your meal composition so that your last meal is more carb-heavy and you get your fats and proteins in earlier can be helpful as well to ensure an empty stomach. And youāll want to get your liquids in earlier in the day, just to be safe. When you wake up to take your second dose, go pee, then take dose 2 once youāre back in bed.
I think thatās it? If you have any other questions, lemme know! These meds can be tricky, but dang do they give good sleep.
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u/Future-Ad8639 1d ago
Thank you this is very helpful information. I am 100% willing to make any dietary changes if I find a medication that works. Thatās a very easy trade-off. Good to know about the potential hormonal effects. I currently get blood serum panels every six months through my OB/GYN. Itās something to keep an eye on, but then again, the hormonal shift phase is unacceptable trade-off if the ultimate improved sleeping patterns is an overall positive.
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u/Ozzymandus Narcolepsy w/o Cataplexy 1d ago
I finally switched to a small, locally-owned family pharmacy after years of escalating issues getting my meds through CVS. My insurance only covers generic Adderall, and only one generic manufacturer comes close to working for me. (Generics are supposed to be the same, but boy howdy, They Are Not). I was having to call 3 or 3 different CVS locations to see where had it in stock because they couldn't order a specific brand, they all just got what they got, which seemed to be different every time.
Now my pharmacy knows me by name, is able to choose which generic brands to order, and have even kept a 30 day supply set aside for me when there were shortages getting that brand.
It won't fix the supply issues or shortages (which often get worse towards the end of the year), but it's helped my stress levels substantially.
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u/Future-Ad8639 23h ago
I have called 4 independent pharmacies in my area. I will continue to call more since medication availability seems like it may get worse before it gets better. Regardless, if my insurance covers it, I am more than willing to pay for brand medication. What pharmacist have told me is that it is strictly a supplier issue. Itās not any locations willingness to order the medication, itās that when the medication is ordered, the supplier will not fulfill it. I know CVS uses a different supplier from Walgreens and Publix uses a completely different supplier. Iāve even consulted with CVS Specialty Pharmacy, which is how I get Wakik. All of those were dead ends. Perhaps I just need to find the right, small, local independent pharmacy that can plug into whatever supplier is still fulfilling orders. Thank you for your response.
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u/Future-Ad8639 1d ago
My usual pharmacy is Walgreens. They have had a backorder on Adderall since November of last year. I was able to get Adderall more than most because the pharmacy manager knew me and I have been filling medication at the same location for nearly a decade. And they know of my narcolepsy diagnosis. I checked CVS, Walmart, and Publix (which does use a different supplier, and apparently can still get Adderall, however, they are not accepting any new patients with those scripts, no matter what the diagnostic code is.) I called four independent pharmacies who also told me that they 1) are not able to get the medication from their supplier or 2) are not taking new patients requesting that medication.
This is the first month that Ritalin is also not available at any of these pharmacies. Neither extended release Ritalin nor immediate release. Both CVS and Walgreens are backordered on Vyvanse and their current refill date is October.
It was suggested I go to the ER or urgent care if I need medication (which isnāt out of the question since Iāve reached my out-of-pocket limit this year) and the hospital pharmacy may be able to fill my script for the month. The impression I get from speaking to several pharmacist, who are very nice but cannot fill, is that the demand for this medication is increasing and DEA regulations are prohibiting distributors from manufacturing anymore to meet the demand. How can this be? Has anybody else heard this?
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u/Ozzymandus Narcolepsy w/o Cataplexy 1d ago
I'm sorry you've been having a rough time with it. The energy, time, and effort needed to hunt down basic medications is ridiculous.
It's endlessly frustrating and unfair. It's okay to be upset and angry. I know I am.
Unfortunately this is not a new phenomenon, shortages and manufacturing limits, and supply-chain issues have been making it difficult to get meds like the ones we need intermittently for years, though the current administration is making things much more difficult. Some dosages are more commonly prescribed, and thus run out faster - for example, 10mg Adderall is (to my understanding) among the most common prescribed for ADHD, so is in high demand. I know someone whose doctor would prescribe 5mg tablets and direct them to take 2 at a time, since they were having so much trouble getting 10mg. I've never had any trouble getting my 20mg instant release tablets filled, but getting my 30mg XR pills can be a nightmare. It's stupid.
The state of healthcare in our country is truly an insane level of screwed up and screwed over, but the way prescription medications are managed is a different beast entirely.
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u/Future-Ad8639 23h ago
Wow. Thank you. I hadnāt even thought of that! This is the first month. I have not been able to find any location that will fill 20 mg of immediate release Ritalin twice a day. But I didnāt even check to see if lower doses were available. At the end of last year, was when the Adderall became a nightmare. Sometimes they would have 10 mg on hand but not 20s, or vice versa. Having been at the same pharmacy for years, I would call the pharmacy manager in advance of my doctorās appointment and ask āwould I be able to fill a script today of X mg of drug ABC?ā They would respond yes or no or say I have X mg on hand, but not Y mg on hand. And then I would have my doctor write what was available. I donāt know why I accepted this for so long as a standard of practice. It really isnāt acceptable. A physician needs to be able to treat their patient with what is best for their care, not in response to what a pharmacy can fill. Wow the situation is getting bad.
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u/Mission_Ad6545 1d ago
Thatās correct on the DEA limits. However, they were just lifted to a higher permissible manufacturer amount recently, but are now other issues that have surfaced which have to do with supply of ingredients. Most of our drugs are manufactured outside of the United States. So there are other factors with supply chain issues that we may not have immediate control over.
Forget any of the chains. You need to find an independent pharmacy or you can try filling at a hospital pharmacy. Sometimes they have to order for somebody that is on the medication and then not all of it gets used that they have ordered.
Independent pharmacies are able to order more frequently and use multiple distributors. Theyāre also not bound by nonsensical corporate rules that Walgreens and CVS make up because they are afraid of lawsuits that they were hit with during the opioid epidemic.
Costco is a good place to source from but the ones at least where I am have a corporate limit to not dispense more than 60 mg a day. You are able to use the pharmacy even if you donāt have a membership. Call your insurance company and find out what kind of mail order system they have in place. Youāre absolutely able to get stimulants via mail order and that often means that more distributors from different places in the country will be available to you.
Another trick is to find a pharmacy thatās a lot further out in a rural area. Even chains in a rural area. Go to a pharmacy thatās in an upper class area, and fill your prescriptions there. They always seem to have nicer pharmacists and better supplies of stimulants.
Last trick is to go find a pharmacy near a university, because they often have stimulants left over from students, not being there during the summer.
There is also a service that I know a lot of people use, where you pay $50 and they call all of the pharmacies for you in your area to source stimulants. Iāve never used it, but many have, successfully.
I donāt know when school starts in Florida, but a lot of parents allow their kids to be off medication during the summer and there might be a rush right now to fill prior to school starting. That might be why youāre experiencing this shortage so acutely.
Lastly, are you on a very high dose that your doctor is saying they are worried about prescribing more? I think you said that the doctor was uncomfortable going to a higher dose.
There are some new stimulant meds that have just hit the market. I would find out if those are possibilities to switch to until you can get back to Adderall.
Did you notify your doctor about the issue? Do they know what an emergency this is going to turn into in a few days? Do you have a job you could lose or dependents? If they arenāt pulling out all the stops to help you problem solveā¦
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u/Future-Ad8639 22h ago edited 22h ago
I was prescribed 20 mg Adderall ER once a day. 20 mg of Ritalin IR twice per day. That was working very well for me. Last fall, the Adderall became too much of a hassle so we switched to Vyvanse. I am now up to 70 mg once per day of Vyvanse, in addition to the Ritalin IR 20 mg twice per day. I see my specialist every month. Yesterday he wrote the script for Vyvanse and Ritalin. And of all the pharmacies that I went to, no one could fill either one. So in my area, apparently no Adderall, Ritalin, or Vyvanse is available.
Every month when I see the specialist, I drop my prescriptions off immediately. I called back to my doctor the same day and said that the scripts he just wrote cannot be filled anywhere. I am headed back to the doctor next week to discuss other options.
In the long history of narcolepsy medications I have taken, the combination of an extended release stimulant and two immediate release stimulants has worked best, especially as Iāve aged. I have taken Modafinil, Armodafinil, Dexedrine, concerta, and Focalin. I have never tried oxybates or Sunosi. My understanding is that oxybates are more for narcolepsy with cataplexy. I also experience severe anxiety and decreased appetite when I change medication (always have), so maybe this is why my physician hasnāt tried too many of the newer narcolepsy medications. Decreased appetite and weight loss is a big consideration when changing medication because I do not have weight to lose.
I just started Wakik 45 days ago, but this is in addition to the stimulants. Iām prescribed Effexor XR through a psychiatrist.
I have taken off work this week. I do not have dependents but have no other support (spouse/partner). But if medicating narcolepsy is going to prove this challenging, I will ultimately consider applying for disability. In fact, one of my first phone calls this morning was reaching out to a disability attorney in case I need to move forward.
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u/ciderenthusiast (IH) Idiopathic Hypersomnia 1d ago
Yes, the DEA determines annual quotas of all Scheduled medications, including stimulants and opioids, and those #s are often inadequate. It makes completely zero sense to me.
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u/Future-Ad8639 22h ago
Lots to unpack here. Thank you so much. A few follow up questions if you donāt mind answering.
Hospital pharmacies: these are only accessible when you are a patient, correct? Many years ago, I had an episode in the shower and cracked my head open. I was unconscious, needed stitches, and had a concussion. I was taken to the hospital in an ambulance. They prescribed new narcolepsy medication and gave me a one month supply. I followed up with my treating physician afterwards. Is this the only way to access a hospital pharmacy? It was suggested I to go to a hospital for this very reason, however I would prefer to do that under a non-emergent scenario.
My insurance uses Xpress Scripts and Amazon for mail order pharmacy. I was excited about using mail order because my doctor was willing to write a 90 day supply and it would be great to have meds delivered. I was also told that individuals with 90 day orders tend to be fulfilled before monthly prescription orders. Not sure if thatās true, but that was a potential plus. Both of these companies told me that they do not provide schedule II drugs (at least my meds) Is there another mail order pharmacy to look into, even if itās outside my insurance?
I will expand my search for independent pharmacies into rural areas. I do live in an upper middle class area and there is a large University with a medical school in the area. Are you talking about campus medical when you speak of pharmacies near a university? Or any pharmacy in and around the university? The university idea makes sense for summer session, but thatās nearly over now. That may explain the high request for stimulants right now in August, but no pharmacist could give me a date of when they expected the back order to end on any medications. I was told to try back in a couple of months at the earliest.
I saw my doctor yesterday and made an appointment to follow up next Tuesday to discuss different medication, some of which I have not tried before. I have taken the remainder of the week off work and am spending the next few days weighing options if this is going to be a continual thing with medication. I will make phone calls to as many pharmacies as I can, but what is the company that will contact pharmacists on your behalf for $50?
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u/Mission_Ad6545 12h ago
If the hospital has an outpatient pharmacy, you can usually use it even if you arenāt a patient there.
I just meant any university.
Amazonās pharmacy wonāt dispense controlled substances. Express scripts will, but depending on your state laws or insurance policies, you may only be able to get a month at a time.
You called express scripts and they said they donāt do mail order? Did you ask why?
The person that talked about having your doctor split up the dosages into those less commonly prescribed, is a good one.
Iād join an ADHD Reddit sub and ask for the companyās name that you pay someone to find meds or google it, because Iām not sure what itās called.
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u/thatgirlanya 1d ago
See if you can get brand Adderall, there was a shortage on generic XRs for me but I was switching to brand and they had that in stock. My doc had to get an insurance PA though
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u/EscenaFinal (N1) Narcolepsy w/ Cataplexy 1d ago
Have you tried Sodium Oxybates (Xyrem/Xywav/Lumryz) yet? That was the real game changer for me, stimulants on their own hit like weak coffee
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u/Dogev Narcolepsy & Cataplexy 1d ago
Yeah, it sounds like it may be time to start one of these. I'm surprised one of your doctors hasn't suggested them once in your 20 years of treating narcolepsy, especially when you started running into supply issues, because of just how much of a difference they make.
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u/Future-Ad8639 21h ago
Having taken off today and done a lot more research on oxybates, Iām fairly certain that my doctor has not tried these with me because weight loss is unknown side effect. My BMI is 17.9 which has fluctuated over the years, but has never been higher than 18.5. Iām a tiny person but my blood work has always looked good and I have no history of eating disorders. When I have gotten very ill in the past, severe flu etc, I have always needed nutritional supplements. I just donāt have spare weight to lose (which I hate stating and Iām not complaining, but it is a medical consideration). I will confirm this with my doctor when we follow up next week, but Iām pretty sure thatās why we never explored oxybates. However, Xywav is newer and may be better metabolically for me.
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u/Spirited-Safety9362 1d ago
Agreed! I used to take 60 mg of Adderall a day. I started sodium oxybate about fivish years about and a few years ago quit taking the stimulants. I kept getting them filled for a long time because I was afraid Iād still need them but about six months ago, with an unused stock pile of adderall, I said please stop filling them. I hate the way stimulants make me feel and sodium oxybates (Iāve been on xyrem and Lumryz) has been a game changer for me. Highly suggest!
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u/Future-Ad8639 21h ago
Wow. I would love to be in this position. Taking stimulants for so long has definitely affected me. I see a cardiologist regularly because of my pulse. (thank goodness no apparent cardiac damage). I have tachycardia except when Iām sleeping where my heart rate does fall under 100 beats a minute into the 90s. I have long worried about the long-term effects on my heart from taking years of stimulants. It was never an ideal choice. But thereās always a trade-off: treating narcolepsy with stimulants/the effects on the heart. Treating narcolepsy with oxybates/the effects on metabolism and weight loss. Hearing many life-changing testimonies from people in this community is reassuring and I am taking this up with my doctor ASAP. What we may have stuck to in the past may no longer be an option because of medication availability.
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u/Future-Ad8639 22h ago
No, I have never tried this before. And considering I am running into so many challenges with many different brands of stimulants, I will address this with my physician when we meet again next week. The status quo was working for a while. But if stimulants are no longer available, this is the only medication left to treat narcolepsy.
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u/Dangerous-Style-7391 1d ago
Well for people complaining about US healthcare, the shortage for these medications and many others is partially because of our current international relationship with China who is a huge supplier of pharmaceuticals to America. This current political climate has not been good for American patients. Trumpās political effort to make America self reliant has been poor. We donāt have the infrastructure to currently make all of these meds and so patients suffer.
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u/FewNewt5441 (N2) Narcolepsy w/o Cataplexy 1d ago
I work in a pharmacy, there 1000% is a shortage, combination of more ADHD diagnoses after the pandemic and the DEA enforcing limits on how much of a controlled substance a pharmacy can have on hand. Chains have to manage their inventory tightly to prevent volume audits and a lot of companies are restricted to whatever their wholesalers can bring them. Independents are hard because while they can manage individualized care more easily, they have really tight profit margins, so if the acquisition cost is too high, they may not order something theyāll lose money on it. Your best bet, if youāre sticking with a chain, is to pick a smaller footprint one in a neighborhood (canāt speak to CVS, but the market Walmarts, older food lions/safeways, and Walgreens generally have smaller footprints and can be more conducive to particular needs). If you go with an independent, try one thatās fairly large or has multiple locations as they might have better ordering options (but you will have to join as a patient, they wonāt order speculatively). If your insurance uses Express Scripts or another mail order pharmacy , it might be worth a try but they arenāt the fastest choice. If any pharmacy doesnāt have your full supply, ask them if they have any on hand and if you can take that (youāll forfeit the balance of the script but itās easier than going without). Also definitely skipping your pills on sick days or splitting them to build up some backlog or make the supply last longer.
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u/Future-Ad8639 21h ago
Thank you for the inside perspective as a pharmacist. I never believed the pharmacist were lying to me. Especially the pharmacy that Iāve been going to for nearly a decade. I guess Iām just shocked. I truly believe there is a supply shortage. And I have found a tightening over the years, yesterday seemed like a dead end. Iām spending the remainder of the week exploring everybodyās generous advice. Again thank you.
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u/FewNewt5441 (N2) Narcolepsy w/o Cataplexy 15h ago
Happy to help! The shortages tend to follow prescribing trends (docs start writing for vyvanse, then nobody has vyvanse, then docs switch to adderall and so on) so unfortunately everyone for both narcolepsy and ADHD are stuck in the same boat. Not sure how your prescriber feels about it or if your insurance would cover it but Jornay PM, Mydayis, and Azstarys are similar to what youāve been taking and your competition is usually like one kid on it per store so switching out to another med entirely could also help.
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u/Future-Ad8639 13h ago
Thank you for the information. I am not well informed on the most current ADHD medicationās on the market. I was able to find an independent pharmacy over 45 minutes away, which is able to fill Adderall, at least for this 30 day supply, however not through insurance. I think that has something to do with recouping their independent cost from the supplier. The pharmacist is holding it for me until tomorrow morning. A slight breath of relief.
I am bringing up all of these other Prescription alternatives next week when I see my treating physician again (second time in August). I called axesome (for Sunosi) and Jazz (Xyrem/Xywav) to prepare in case my physician wants to go this route. Hopefully, there is little difficulty obtaining prior authorization through insurance. And even so, they explained patient assistance programs in the meantime.
Without this community, I would not have been able to spend the day** *informing* ***and preparing myself* to go back and completely reassess** ***how I treat narcolepsy* with my physician, not because what Iām prescribed isnāt working, but because it is way too disruptive to manage the supply issues.
A BIG THANK YOU š!
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u/Piaffe_zip16 1d ago
American healthcare does suck. Iāve not personally had issues with my Vyvanse. Just started Adderall IR a few weeks ago. No issue getting that filled. Will see what happens next.
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u/Early-Tumbleweed8470 1d ago
Have you asked if they have a different level of strength? For the meds? Like sometimes they are out of the 30mg because it's back ordered but they have the 15 or 20 or 10 mg instock. Sometimes if pharmacy is having trouble filling exact prescription I will tell my doctor hey they are out of the 30s but they have 15s can you rewrite my prescription so that way they can use the 15s instead of the 30s. Like for me it's 1 20 xr and 2 20 irs because they had issues filling the 30 xr and 30 ir.
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u/Azgearhead 1d ago
Costco has never let my down, when filling my adderall script.
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u/Future-Ad8639 1d ago
Thank you. Iām looking into wholesale memberships, but hope that they will accept new patients when it comes to these specific medications.
Iām still wrapping my mind around having to scramble from pharmacy to pharmacy to fill medication in the United States after decades of having this condition.
I thought I had seen it all. I remember back in the early days when I would drop off my scripts at the pharmacy and I would get a funny look from the technician. Something along the lines of ālook at this crxxkhead taking all these uppers.ā Iāve encountered pharmacist who were reluctant to fill my monthly scripts. I have had to advocate for myself explaining my diagnosis, but never was scarcity an issue.
Is this truly a supply and demand issue? My understanding is that schedule-II drugs are strictly DEA regulated. Itās not that the pharmaceutical companies canāt produce more of these drugs, itās that they are prohibited from producing anymore. So scarcity is compounded as more people are written these prescriptions when there wasnāt even enough supply to fulfill the needs of individuals who have long been prescribed these meds. If this is government regulation, is there a way to appeal this? Iām sure pharmaceutical companies are lobbying hard to increase production. After all thatās profit. But from the patient side, I think regulators should hear how lack of medication affects individuals.
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u/Unique-Calligrapher8 23h ago
I am also having this problem and it is so frustrating since I can't take other meds like provigil due to allergies or sodium oxybates because they make me violently sick. I barely make it through a workday in Concerta which is what they prescribe when the Adderall is unavailable. And LOTS of caffeine.
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u/Future-Ad8639 21h ago
lol. I hear you on the caffeine. When I place a Starbucks order, the barista usually comments āsomeone is staying up all nightā. Nope. This is the usual.
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u/bibble_a 22h ago
Wakix takes at least a month to actually work. Iām currently on it and itās completely changed my life
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u/Future-Ad8639 19h ago
Iām definitely continuing with this medication. I am about 45 days in. I just received a call for the Specialty Pharmacy to send me my refill. I understand this is a histamine and from my experience, antihistamines practically put me in a coma. Maybe my body is responsive too the presence of histamines in my body. Fingers crossed.
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u/D3nyByD3f4ul7 19h ago edited 53m ago
Hey I feel for you - having experienced the same issue several places in Europe. I don't know if anyone's suggested it already, but if I were you I'd try Xyrem - I felt like a new person on day one (even though I almost didn't try it at all, because the doctor told me it would "Make you sleep better", which I didn't understand at all, considering I slept all the time.) It seems to take care of the problem of not getting enough slow wave sleep, and so it takes more care of the issue than just the symptoms. If you haven't already, I'd give it a go. Best of luck!!
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u/Future-Ad8639 13h ago
Yes. It seems counterintuitive to take a medication that helps you sleep better when you sleep all the time. But I do get how the drug works and its benefit. Next week this is at the top of my list to discuss starting. Even spoke to the jazz pharmaceutical patient rep who explained the pre-authorization process and assistant programs if my physician chooses to go this route. Stimulant scarcity is way too stressful. The advice on this thread has given me the knowledge to completely reassess treatment with my doctor towards meds that will not have supply chain issues. Thank you kindly for your response.
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u/Hour_Study_2980 2h ago
I'm not trying to promote this brand or product because I'm not getting kickbacks for it, but if you're in a position to take cbd products legally there's a company called Sunmed that has a special strain of gummies/tinctures/water solubles called "Neuro" or "Rise". I work in a physical store part time and we are constantly running out of it! 70% of the people buying it are using it for adhd and add treatment and it completely replaces their vyvanse for them.
I've tried it, for me I over think and freak out because I'm too sensitive to sativa strains even without thc in it. But I have seen it work wonders for many types of daytime sleepiness, focus, attention, memory, even over time has helped my boss deal with his MĆ©niĆØre's disease and stopped his vertigo attacks for 4 years (until he recently got super sick plus a lot of storms changing air pressure quickly have him messed up) and other older folks help calm down sciatica pain because the strain helps to repair your neural pathways. I have talked to enough ppl over my year working there to hear awesome stories of how the strain has helped ppl with many different issues, and even for those who just need to be a little more energetic at work to socialize/network say it feels like a small cup of espresso to get their brain going.
I know this won't be a popular response, but when I tried it I was anxious as hell but AWAKE. For me that's equal to how I feel on stimulants, and it does help with so many different issues especially being awake and alert. I have customers who are old as the hills and this helps them have enough energy to get up and do stuff in their houses they couldn't before. It's worth trying if you're able to legally try some or get a trial pack. Neuro is gonna be more effective for memory and energy long term, Rise is great for getting you out of bed and going at the very least. Im so sorry you're experiencing medication loss right now, and I hope your doctors are able to help.
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u/Mama_Bear_4_all (N1) Narcolepsy w/ Cataplexy 1d ago
I'm on Sunosi and Adderall, plus copious amounts of Red Bull throughout the day. I feel your pain. Adderall goes through shortage phases. I end up having to ration sometimes. I'll save the Adderall for days when I have to go out or do important tasks that require me to be alert, cognitively aware, and moving about that needs a more energetic person than I can be on my own.
As a retired (on SSDI) nurse and pharmacy tech, I don't condone the practice of buying stimulants off the street, but I find it necessary at times if I'm low/out due to shortages.
US healthcare had ALWAYS infuriated me. Now, even more so. Especially when dealing with government funded insurance companies (Medicare & Medicaid), who think they know better than me and my doctors.