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Actiq / Strange Side Effects???

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Posted 8/20/2013 3:32 AM (GMT 0)
Hi all,
I've been on generic Actiq for years & at a fairly stable dose. I'm due to get a SCS implant for my low-back & my PM has been gracious to give me a bit extra medicine when needed since I've been hurting so much lately.

The past 4 weeks I had to switch pharmacies & the new pharmacy sells a generic (brand) that I'd never even heard of. The packaging was not the standard industry color (it's 400mcg, but packaged in green, not blue) & the NDC number didn't match the manufacturer's website so I called to ask them questions but it turned into a bunch of people yelling at & interrogating me in a thick South Asian accent. For some reason I really struggle with that accent & them yelling and talking hurriedly did not help. So I'm still not entirely convinced it was even the proper medication except the hotline did say that the packaging doesn't matter, it's the lozenge & printing on the lozenge that matters and that was correct.

But here's my problem: for some reason, when I've been taking the Actiq this month (due for OV on Friday - can't get in sooner no matter how much I've begged & pleaded my case) shortly after I take it I get a racing heartbeat & feel anxious & hopeless about things. I've had similar issues with some of the psych meds & Nucynta nearly did me in but only had to deal with dizziness, nausea & too slow breathing from Actiq.

PM's office said it doesn't make any sense that Actiq would cause faster breathing & heart rate. I believe them, but I know what's happening in my own body. Has anyone else had this happen? It starts maybe 30 minutes after a dose and lasts 1-2 hours. All I know is it's definitely not withdrawal & it only happens with Actiq. I don't get that problem with Dilaudid but I try not to take that too much since I have a slight allergy to it that triggers my asthma. But the reaction to the new generic Actiq brand is even more uncomfortable than an asthma attack. Thoughts? Experiences?

Thanks!
Posted 8/20/2013 6:20 AM (GMT 0)
Hey Frances....

Have never had that happen - and I've been on/off Actiq (brand and generic) for years now, at various dosing (from 600's to 1200's).

From what you describe -- that's not a normal reaction. Could it be a filler in the new generic med? Possibly.... possibly you are allergic to the binding ingredient or something.

That being said - what really concerns me is the green color. That's the color of the 1200mcg.... is the "ring of color" at the base of the lollipop, green? That almost makes me think that there was a misprint of the dose.

All I can say is that I definitely wouldn't take it if you are getting symptoms worse than an asthma attack.... and I would just try to make it until your office visit on Friday. Are you on a long lasting pain med?

Take care - let us know what happens.... --Tina
Posted 8/20/2013 12:10 PM (GMT 0)
Blessed,
My PM knows I'm getting asthma attacks from the Dilaudid. I've been to ER a couple times & they did verify that is exactly what they are. Because of that, he has been willing to write me for extra doses of the 400's when my pain has been too out of control. He doesn't usually do that for his patients mid-month, but since I cannot tolerate anything at all except fentanyl citrate & dilaudid (and my ability to tolerate the Dilaudid is now questionable with all these asthma attacks even with the lowest possible dose & only taking 2 pills per day), we don't have any other options.

I thought green was 600's. I know I haven't been taking 1200mcg doses. I'm super-sensitive to medicine & no way could my body have tolerated that kind of a jump in 1 day. What I do feel like I've noticed -- although who knows because life has been really, really crazy for me as late -- is not getting a stable response from the medicine that's packaged like this. A couple of doses I felt like it was maybe a little stronger than usual. Other doses I took it & felt side effects but basically no pain relief whatsoever. So I was concerned it might have been a fake, which is why I called the manufacturer but then those people went psycho on me.

I am on Duragesic, but I can only handle the lowest dose of it. We tried going up, but I had an unusual (but documented) reaction to it of needing more BT meds on the higher dose. The real problem is gonna be what to do after Friday. My old discount card was for Walgreen's and they always got one of 3 brands - Watson, Teva or Cephalon (which I think is funny b/c Teva owns Cephalon, but whatevs). But that discount card no longer covers fentanyl citrate. So I got a new discount card that was supposed to be for CVS, but they said they cannot accept discount cards on TIRF REMS drugs, so I had to go to another pharmacy & they had this different manufacturer. The strange thing is that the first box of generic Actiq I got had a blue stripe on outside of box, but then the blister packs & the handles were green. The second box by the same manufacturer at the same pharmacy had a green stripe on the outside of the box & the blister packs & handles were also green. NDC numbers didn't match the manufacturer's website on either of them, but then again, I'm not exactly sure what that means. Just really nervous since I don't have other options. The discount card saves me $800/month so it's not like I can just go to another pharmacy & pay full price. :(
Posted 8/20/2013 12:14 PM (GMT 0)
I did look up the NDC code on the FDA's website & found out this code is also correct for the 400mcg strength -- kinda strange it wasn't on the manufacturer's website with the other code for that strength, but whatever. I guess that makes me feel a little better, but still think the green coloring is bizarre.
Posted 8/20/2013 12:44 PM (GMT 0)
I'm not familiar with the medication you are on, however, I am familiar with having had side effects from a generic brand of a medication I had been taking for years. This has happened to me on at least two occasions. One, I was allergic to the dye used the generics, so I just went back to taking the "brand name only" which was white, and was fine. Another med, I was having reactions to the binders or fillers they used. So yes, that certainly can happen. My doctor was sympathetic and wrote the prescription for "brand name only" to help me avoid side effects.

If you cannot get "brand name" perhaps you could ask the pharmacy itself for another "generic"... Although it's controversial, I stand by it that percentage of bioavailability varies, and manufacturing processes vary, so...don't give up yet...check with the pharmacy and ask them. Perhaps your pharmacist will be sympathetic to the severity of side effects you're experiencing and you can link them to when you started this particular drug?

Just a thought.


Sookie
Posted 8/20/2013 5:01 PM (GMT 0)
No, the green is typically 1200mcg..... here's info from a website:

200 mcg—gray Actiq 400 mcg—blue Actiq 600 mcg—orange Actiq 800 mcg—purple Actiq 1200 mcg—green Actiq 1600 mcg—burgundy

So, that is just really strange. Like I said - I've been on these for years and - despite brand name, generics, etc - the colors are all consistent w/ the dosing.

That being said, if you have confirmed the number - I guess there are exceptions on the coloring.... it still would make me really nervous. Especially w/ the discrepency of different colors on the box and the blister pack/handle.

I'm a bit confused on the payment thing. Are you using insurance for these? I go to Walgreen's.... but why won't CVS accept the card w/ the REM program? That's strange.... only because the TIRF REM is just a safety program -- so have no idea why that would be linked to a discount??

Hope you figure all of this out! --Tina
Posted 8/20/2013 9:48 PM (GMT 0)
My insurance is crap. It kept asking me for all sorts of stuff & we provided everything for which they asked -- trying other meds (26 of them), evidence of medical necessity, on a long-acting medication for at least 60 days, peer-reviewed medical journals showing off-label use of medication for my diagnosis -- but they've continued to deny appeal after appeal. We all know the reason why ... price. They cover plenty of other off-label meds that are cheap so I'm not about to buy their silly line about it being for "patient safety". I've been on the medication at this dose for nearly 8 years; I think we've established it's safe. :P

I was nervous about the coloring too. I'm still not 100% convinced that it was the right stuff. I found another pharmacy that can order a brand of generic I've had before so I'm gonna go with them. I agree with Sookie that sometimes the ideal is to just get the brand name, but it's WAY too expensive so that's not an option. The brand manufacturer also makes generic & that's what they usually sold me at Walgreen's. Such a bummer I can't go there anymore. CVS says that their REMS reporting program is tied to the patient's prescription insurance. Since my insurance won't cover it, I use a discount card to keep from paying full price, but the CVS reporting system doesn't have a workaround yet to let me fill my scripts there. The pharmacists have requested that a work-around be developed, but I'm told it will take some time for them to put that in place. In the meantime, I'm left in the lurch. :*(
Posted 8/20/2013 10:14 PM (GMT 0)
I understand.

I'm paying a ridiculous amount of money for a different insurance other than my family - just to keep the Actiq script. It's the one med that works.... keeps me functional -- instead of ending up in the ER a couple times a month w/ vomiting, dedhydration, etc from my migraines.

I haven't had an ER visit since I got back on the Actiq. The funny thing is -- back when I had another insurance that didn't cover it - I tried to show them that they were paying THOUSANDS of dollars each month in ER visits. (I have autonomic dysfunction.... so once I start vomiting from a migraine - I quickly go downhill.... and it takes fluids, meds to stabilize me). Nope. They would rather pay that than the medicine! Ridiculous!

Anyway -- I used to have go to my dark bedroom for the day, or even 2 days.... not easy w/ 8 kids. Usually meant my husband coming home early -- which, since we are self employed -- cost us major money.

So the extra expense of insurance "is" worth it -- but it kills us to write that check each month!

So, I feel for you.... for sure. I'm almost completely tolerant to all meds except fentanyl. I can't use the patches, though. So the oral fentanyl is it for me.

The funny thing is.... I *think* I could probably get down to only using Actiq...... BUT - I have to stay on the Oxycontin JUST to have an ER on board. Doesn't that seem ridiculous!

Yeah.... I'd still be concerned about the green packaging!

Good luck on Friday..... Hope that other pharm can cover them..... Let us know.

--Tina
Posted 8/21/2013 2:05 AM (GMT 0)
I have been blessed that my insurance covers them. But I will be changing at some point in the next year or two. Would you mind sharing the discount card that saves you that much? Is it a card you have to pay for?
Posted 8/22/2013 12:32 AM (GMT 0)
No, I get it for free on internet. Goodrx.com -- but you have to call them because not all of the pharmacies listed will fill a C2 with a discount card. It's still crazy expensive for me. $1400/month but that's $800 less than full retail so it's something. The previous card I had was from ezdrugcard.com & that only ran me $1100/month but for now they're not covering generic Actiq. Hopefully that will change soon, but who knows.

Tina,
I can totally relate. I am blessed to have a PM who spends a lot of his free time trying to understand many different types of pain medicines & how/why they work so he actually gets why IR fentanyl is the only thing my poor little body can tolerate. It bypasses just about everything so other than worrying about my breathing, we don't have to worry about side effects with it. I've had a few opioids that haven't worked, but most of them have caused serious allergic reactions or life threatening complications, none of which outweighed the benefits.
But my health insurer outsources the prescription plan to THE worst prescription insurer in the country (they actually brag about how they deny more scripts than anyone else!). So they don't much care that they have to pay tens of thousands of dollars in hospital bills... well, I guess they care, but it doesn't impact their willingness to cover me getting Actiq because they don't have any responsibility for it. It's the same card & everything so it wasn't obvious to me until I started my long battle with them that there were 2 totally unrelated companies handling medical & prescription benefits. It's supposed to save money by forcing patients to choose covered options but somehow my body just wasn't programmed to respond to illogical demands of insurance companies. Go figure.

So I end up back in the ER & hospital more often than I'd like. Lost this last job in large part due to the fact that they wouldn't cover my Actiq. Ran through too much of my savings & monthly income to then be able to pay for proper treatment when I was injured & couldn't keep up with my work as I got more & more run-down. I'd gladly pay for a medical plan on my own if I could find one that was cheaper than the cost of the Actiq, but the lowest price I've found that actually covers the Actiq ran me $4K/month which makes no sense at all when I can just buy the medicine full retail at $2200 or at a discount for $1400. No sense at all. Once I get my SCS implant, it will be advantageous to just drop my insurance altogether & sign up for foundation care to provide Fentora for free & then I'll just have to pay for occasional shots with my PM. Hopefully that will happen soon. Just got call that pre-authorization went through today. Gonna be worse for a while with the post-op pain, but looking forward to the new year & hopefully being in a lot less pain. :D
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