Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group For Oxy users: Warning about possible shortages

Hello all,

Well, I got a kick in the pants tonight when a friend took my oxycontin script over to my regular Walgreen's to be filled. I've had no problem getting it filled there for over a year now, which is significant because they were literally the only pharmacy I've been able to find in my large metro area that carries reasonable quantities of the generic oxy (heck, carries ANY quantities of the generic, that is).

Well, tonight they told me friend that not only did they have NO generic in stock, they had NO brand name either! When I had him ask how long it would be to get it ordered and delivered--something that in the past has always taken only 2-3 days, max, and sometimes happened overnight--he was given the shocking news that it would take at LEAST TWO WEEKS to get the number and size of pills I needed. When asked WTH, er, I mean, WHY this was so, the pharmacist more or less said, "Um, no idea."

So I did some digging on the net, and it seems there are shortages in other areas. Someone posting on a pharmacy board near the end of January said they were unable to find the dose they needed anywhere in . . . are you ready for this? . . . New York City! While I'm sure they didn't literally call EVERY pharmacy in the 5 boroughs, I bet they visited a hell of a lot of them before they gave up.

As far as I can tell, this current shortage might be caused by two things. I was able to talk live online with a pharmacist from Walgreen's, and he passed along some good info. First of all, the main reason for the shortage is a simple manufacturing slowdown by seemingly all of the companies that make generic oxy. He really doesn't know why this is happening, and, honestly, it shouldn't be happening, at least not now. Based on a few things I read at other sites, it seems that each of the generic manufacturers is allowed to make X number of oxy pills each year, not one pill more. Thus, past shortages have always occurred near the end of the calendar year, when a few makers would have to halt production because they had filled their quota. Common sense tells us that, if such quotas are real, the one time of year we shouldn't have to worry about them--heck, we should be swimming in oxy--is the first quarter. How could a manufacturer reach it's limit in three months? Simple, it couldn't. So, while nobody knows the real reason for the slowdown, there is a possible answer that is tied to the second reason that might be behind this shortage.

That reason is a biggie: It's the switch Purdue has made in the brand-name oxy to the new formula that is more tamper-proof. This move was made under orders from the FDA to make oxy harder to abuse, or else. I didn't realize the new formula was out already, but apparently it is and it's called Oxycontin OP (don't know what the OP stands for). Since I HAVE to take the generic or my insurance won't pay for it, I don't have to worry about taking that new version--yet. I have a feeling the generic manufacturers are going to be forced to make the same changes, but I could be wrong on that--I'm not a pharmacist, not an expert on the subject. Just using a little logic. If that happens, I'm not real excited about what to expect with the new formula. Forum after forum is filled with posts from people all saying the same things: the OP makes them sicker than a dog, with nausea, vomiting, gas, and bloating. Much worse than those fun symptoms is the fact that they are also saying that the new formula simply DOESN'T WORK. Apparently, the new formula uses new 'binders' in the medicine that make the pills crush- and chew-proof. Unfortunately, those binders also seem to keep the medicine from getting into the system the way it once did. As I said, there was almost universal agreement on the forums I checked out that the new drug was FAR inferior when it came to pain relief when compared to the original. What sucks is this isn't a simple case of New Coke vs. Original Coke we're talking about here. There's no way Purdue Pharma is going to admit the new drug sucks unless huge amounts of data are gathered to prove that fact. Thus, I bet folks using the brand-name oxy can expect at least a few years of whatever they're getting from the new OP. Isn't that a cheery thought?

To make matters worse, we are supposed to get up to 6 inches of snow here in the Detroit area tomorrow. That means that going out to either get a script for a new med from my doc, or driving from one pharmacy to the next asking if they have any oxy in stock. (Here in Michigan, pharmacists cannot give out any info about the availability of class II drugs over the phone--is this a national policy? Anyone know for sure?) Neither of those plans excites me even a little bit, needless to say. I am lucky in that my mom is down visiting right now, but no way I want her out in the kind of weather/roads we're supposed to get tonight/tomorrow (Oh great, just heard the 11:00 weather update and we're now under winter storm warning; freaking wonderful.) I'm largely recovered from my October fall, but no way am I back to the point where I can go out traipsing around in the snow. He**, I wouldn't have done that last year, let alone now.

I have a feeling this is the event I've been expecting that will finally get me to say goodbye to oxy and hello to another pain reliever. Problem is, there's nothing out there that works as well as oxy, is time-released, and is available in a generic form and thus cheap enough to be on most insurance company formularies. Heck, oxy actually isn't on my formulary--I have to get a 12-month exemption once a year. There are a couple new drugs out there, I hear. The online Walgreen's pharmacist, the one who confirmed that the shortage was real, said there is a newer drug called Nucynta that might be a good substitute. I did learn that it's not time-released. There is also a brand-new, first-ever, time-released form of dilaudid available in the U.S. called Exalgo that supposedly works well and only has to be taken once a day. Problem is, it is OBSCENELY expensive (a pharmacy rep said in a forum that ONE bottle of the 16mg dosage will cost $2000!!!!!!!!!!!!!!), which means no insurance company will add it to their formulary. Bah.

No, I have a feeling that a switch I knew would likely happen someday might be happening at the start of next week (I have enough Oxy to get me through to Tuesday). Methadone is cheap, readily available, and very effective at relieving severe pain. It is not available in an extended release format, but if taken three or four times a day, it can provide the same kind of coverage as the ER drugs. Best of all, it has no other drugs "attached" to it, ie, acetaminophen or naproxyn. After all, percocet would be a great drug (psst, it's oxycodone, same as oxycontin), but they had to screw it up and include acetaminophen. No, methadone rides alone, which is a huge plus.

A huge negative are the side effects, which can be much more severe than oxy. They are very similar, of course--shortness of breath, slow heartbeat, depressed central nervous system--but I have read that they are often much harder to spot when taking methadone and, in addition, they can come out of nowhere with even a small dose increase. Worse yet, they can be so subtle that the patient doesn't even feel them happening until it's too late. Methadone, while a very effective drug, also has to be watched like a hawk apparently. In other words, you MUST work closely with your doctor if you ever decide to make a switch from oxy to methadone. Don't ever rely on conversion charts you find on the net--anywhere on the net. Trust me on this one folks--taking this drug requires direct doctor/patient communication, especially in the first days/weeks after it's prescribed.

Ta-da! A long, rambling post just like the old days! For all of you who have joined KA since I last posted here, welcome to this wonderful oasis. I should have been around much more than I have been, but I took a tumble back in the fall and broke a leg. They thought about putting me down, but I elected to be put out to stud instead, so I've been busy recovering. (In best Foghorn Leghorn voice: "I say, I say now that's a joke there, boy, a joke! Do ya hear me?") Unfortunately I wasn't able to sit in the chair I use at my computer desk except for very brief periods of time, which is one reason I wasn't around much, and, when I would settle for using my laptop from my recliner, I learned very quickly that the cataract in my left eye is now so bad that the laptop monitor irritates it like a son of a gun after only a half-hour or so. Combine those two obstacles, and I just haven't been around much. I will try to do better now that I can tolerate my chair better these days.

Alas, speaking of the cataract, my long-time friends here will just LOVE this one. If you recall, I have twice been a week or two away from having the surgery to remove it, only to have it yanked away from me each time. The first time, I was diagnosed with iritis at the LAST check-up before the surgery, and the second time was just this past October; that time, I was scheduled to have the surgery exactly one week to the day after the fall that broke me leg. Needless to say, I wasn't in the operating room that day. So, I bet you guys can guess the punch-line to this very crude joke: Yep, that's right. I have an appointment with my eye doc tomorrow at 1:50 to take the measurements needed to do the surgery, which would likely have been done next week or the week after.

I used the past tense there because with all the snow--and the high winds--we're supposed to get, it is 99.999999 percent certain I will NOT be making it to my appointment tomorrow. Can you freaking believe the luck? Sure, I should be able to reschedule just a week later, and I will, but there isn't a bone in my body that thinks I will make it to that appointment either. I bet there's already snow predicted if I check the long-range forecast. I swear, someone up there does not want me to have this cataract removed, and unfortunately, it's finally bad enough to pose some real problems. I can no longer safely drive on my own, and even when walking, it really sucks to not be able to see anything to my left. And too many of you can relate to the insult added to my injury that I can thank on AS: Not only can't I see peripherally out of my left eye, I also can't turn my head to the left AT ALL to try to see things that way! Nope, my neck is totally fused, with maybe a half-inch rotation left and right, so if I want to see something on my left when walking, I have to go all the way and turn my entire body to see it! Fun, fun, let me tell you.

Until I get this eye fixed once and for all, I know for a fact I just won't be able to be around KA nearly as much as I used to be. Yes, I will try to be here more often--try very hard--but with little time on the laptop available to me, there's no way I'll be able to put in any significant time. I have missed my old stomping grounds, and of course I've missed all you folks who haunt this AS kicking playground even more. I've tried to follow all your ups and downs as much as possible, and you'll just have to trust me that even if I wasn't posting, I was always here with you in spirit, offering sympathies during the hard times and laughing along during the good times. That will never, ever change.

Take care all,

Brad

I forgot, I wanted to ask one thing: Has anyone heard from Possi yet? I saw one thread quite some time ago that posed this question, and I never saw any positive outcome. Did I just miss it? Angelmom, and anyone else, have you heard from our dear friend? I do worry about her so.

Thanks,

Brad

Hi Brad,

I got Christmas greetings from Possi but nothing else. She had told me in the fall that she planned to return at some point but, when she didn't, I assumed she changed her mind. I sent her photos and a note at Christmas but didn't get a specific reply, just the more generic Christmas email.

Hi Wendy,

Well, Christmas is more recent than any date I knew about, so that makes me feel a bit better. Still, I sure wish we knew she was ok. She just has SO much on her plate, and I am a worrier. I'm sure she's fine and I know we will hear from her as soon as she gets a chance to visit. (Psst, if you see this Joyce, please touch base, even in a little tiny way! xo)

Brad

I think she last came on to KA back in September but didn't post anything. I miss her too.

Hey Brad,

It's good to see ya Buddy, just sorry your having all of these issues.

Umm about Possi, I have her on FB and I think I still have her phone number I will try to find it and call her tomorrow, wasn't last we heard something real big like bypass surgery or AM I getting my facts messed up. I know between hers and Floyds issues it kept them hopping..I will see what I can do.

Brad, about the Oxy's Im with you on this one..ok about a year ago someone told me they had to quit making the generic ones, I was like WHAT WHY? not sure I got a clear answer something to do with the patent or something, it was about the same time I started having issues filling mine I get alot like you...so I would have to go to like 3 or 4 pharmacy's until I found one that had enough.

Now I dont know how relevent this is Brad BUT I do know that every time we have a robbery of a pharmacy one of the first things they go for is is the Oxycodone or Oxycontin so they try not to keep a huge supply on hand and they are so stinkin careful. I have tried calling them and asking them if they had my quantity and they wont tell you and I can understand not doing it for just anybody but Walgreens is the only place I get mine filled and he actually had my account pulled up and sees that I get them EVERY month and he still said we can't tell you, I was mad but I understand BUT then that makes me have to drive pharmacy to pharmacy.....ahhhhhh!

I'm not sure what we are going to do Brad if this thing gets really sticky, it works well for me too.

Have you tried the Fentanyl patches? they are stronger than the OXY but I dont like them could that be an option for you?

I dont know what the answer is maybe we will be able to figure something out.

Will let you and Wendy know something about Possi as soon as I can get hold of her.

I know your having issues but try not to be gone so long we miss you!

Hugs,

Lisa

The whole Oxy thing is really upsetting to me. I have been on Oxycotin for 6 years. When I first started, there was a generic for it and my insurance paid for it. 2 years ago They pulled the generic and was forced to pay for the brand. I keep asking my pharacist about the generic and it is supposed to be back on the market in April of this year, but who knows. Being on Medicare, Oxycotin is a teir 2 drug and is very expensive. I have tried other meds because of the cost and none worked out. I'm allergic to Fentynol, Morphine makes me sick as a dog. Oxycotin is the only med that I have absolutely no side effects with. The manufacturers of Oxycotin are making big bucks off of the ones who can't afford it, the Medicare group, who hits their donut hole and is forced to pay out of pocket to continue their pain management. I guess you can tell this upsets me when drug companies are allowed to take advantage of us for the all mighty dollar.
Cindy

Hi Cindy,

Great to hear from you, even if it's concerning a topic that is so frustrating to both of us!

I'm in total agreement with you--oxy is the first big gun pain reliever I've taken that works exactly how its supposed to and does not cause me any serious side effects. I'm not allergic to Fentanyl, but the patches do make sicker than a dog within an hour of being stuck on me. Morphine isn't quite as instantaneous, but in the past, it has also caused severe nausea and vomiting. Even so, based on an email discussion I had with a pharmacist the other day, I think the drug I might try first in place of the oxy is morphine ER. I'm hoping that it's only the liquid, IV-delivered form of morphine that makes me sick. Also, as I alluded to earlier, even IV-delivered morphine only made me sick after being on it for three or four days; before the first bout of nausea, I seemed to tolerate that pain reliever with no adverse effects. Perhaps in pill form, and taken on a full stomach, morphine ER won't give me any trouble. Here's hoping, anyhow.

I do have one question for you: Where did you hear that the new formula of the generic might not be available until April? In the past two days, between my mom, dad, and doctor's office, I've heard from about 10 different pharmacies and didn't hear any mention of the drug not being available again until April. Of course, only 3 of the 10 pharmacists even knew ANYTHING about the shortage, and only 2 of the 3 knew any substantial information. Those two completely confirmed the "shortage is caused by switch to new formula" story, although neither had any new information for me. It's interesting to note that, when asked when they could have the generic in for me, the pharmacy where I regularly get my oxy filled didn't hesitate in saying it would be two weeks to get enough to fill my script. Interesting, that is, because every other store were unanimous in saying something completely different: They all said that they honestly did not know how long it would take to get some in if they ordered it that day. The two pharmacists I mentioned above who did actually know why the shortage were more pessimistic than the others about how long it would take, but they just said had no idea at all how long it would take to get the generic stocked; neither of them said anything about the drug being out of commission until April. Thus, I would definitely love to know who told you the April date--I don't doubt for a minute that it's true the delay could be that long, but curious to know how you found out.

I am trying to attack this problem on all fronts, and one of the main tactics was to call my insurance company yesterday to see if I could get the brand-name oxy at the rate they normally charge when no generic version of a drug exists. With my Medicare supplemental insurance, I pay just $4 for generic drugs ($6 when I'm in the donut hole, an extra benefit that drastically increased the price of my insurance but is worth every penny). If I choose to purchase the brand name when a generic is available, then I pay full price for that drug, or close to it. If, however, I'm forced to buy the brand name because it's too new for a generic to exist yet, then I pay $35 a month. As you mention in your post, Cindy, oxy is brand name oxy is prohibitively expensive--it would cost me up to $700 to get my script filled.

Well, since the generic has pretty much disappeared for this unknown amount of time, I called the company and explained what was going on, telling them that several pharmacists have all confirmed to me that the drug is totally unavailable at this time due to the manufacturing change. As expected, the rep I talked to said they hadn't heard anything official about this--in other words, no bulletin issued by the drug makers. Nice, isn't it? Luckily, the woman I spoke with was extremely nice and seemed genuinely concerned about my dilemma and said she WILL try to find out what's going on. She would have done it then, but she said the "pharmacy management department" was closed for the weekend, and they were the ones who would ultimately decide if I could purchase the brand name at the reduced price. She promised she would talk to that department on Monday morning and call me back; I'm hoping she makes good on that promise, as I explained to her that I had an appointment with my primary care doc at 1:00 Monday and intended to ask for a different pain reliever at that time. What I'll do is wait until about 11 that morning and then, if I haven't heard from her, I'll call in and try to force the issue right then.

Isn't this just SO much fun? HA!

Brad

Hi Lisa,

Good to hear from you! (Although as I said to Cindy, wish it wasn't due to this frustrating topic.)

Yeah, I remember the shortage a few years ago. As I recall, that came about because the companies making the generic had somehow jumped the gun and started making generics too soon, which meant they were making them illegally, of course. Luckily, that one didn't impact me too badly because, in the complete opposite of what happened this time, the news about the generics being stopped was very well publicized and easy for insurance companies to verify. Therefore, my insurance company at the time agreed to give its members the better price on the brand name right away. One of the few times I can ever remember a potential problem regarding one of my scripts being resolved with zero angst and drama.

You're right about all crime surrounding oxy. That has always been the main problem with the drug and has meant, from day one, that it was pretty much certain that one day oxy would either be taken off the market or would always be plagued by problems caused by the folks who abuse it. The issue you talk about regarding robberies is the same across the entire country--pretty much every drugstore carries only a short supply of the drug, if they decide to carry it at all. I remember there being "oxy crime waves," for lack of a better term, across the U.S., especially in several southern states and, surprisingly (at least to me), in the extreme northeast states, esp. Vermont and Massachusetts, as I recall.

It infuriates me to no end that a good drug is going to be ruined (as the new formula is doing, it seems) and, ultimately, taken off the market. This drug works better than any similar drug and, like many opioids, has fewer side effects than ANY other drug we can take to relieve pain associated with AS. This includes all of the anti-TNF drugs, all NSAID drugs, and drugs such as methotrexate. Every one of those drugs has moderate to incredibly serious side effects, many of which are common, not rare. All these groups of people suing Purdue and petitioning the FDA to abolish the drug because one of their loved ones chose to abuse the drug and use it in an illegal manner for which it was NEVER supposed to be used. While I do have compassion for those people and I'm very sorry they lost someone close, it just makes me so angry that they want to simply blame the drug manufacturer and ignore the fact that their loved one should have NEVER been taking the drug in the first place. They were breaking the law using it the way they chose to use it, and they knew it. This is just another perfect example of how the idea of taking personal responsibility for one's own actions has all but disappeared in the United States. The person they loved is dead because they chose to use a drug illegally, not because the drug itself is inherently dangerous due to the way it is manufactured. If people were using the drug correctly and regularly dying of overdoses, etc., that would be a different story. But to try to sue a company into bankruptcy and get a drug that helps millions of people taken off the market because someone they loved chose to use it as "hillbilly heroin," well, that just p***** me off. I apologize in advance if my position angers any of you or makes you think I am a cold, unfeeling person, but it's what I believe, and very strongly.

Brad

Brad,

I agree with you 100% on all of it.

Most of us adhere to how to use it, it's the few who abuse it that causes the problems.

Sadly, here in oklahoma it is a hot spot for the oxy robberies..thats the first things they want.

You and me may have to get our protesting signs and start a protest (if I thought it would help..lol)

Hugs