[Treatment] Xyrem and Fentanyl Patch

[Kate]

The sleep doctor that I saw, after my sleep studies which showed erratic sleep cycles, wanted give me stimulants to help my daytime sleepiness. I said that I would rather, either figure out what is causing my problem or treat that. That's when I mentioned Xyrem.

He then noted that I used a fentanyl patch and the doctor then said absolutely no to Xyrem until I was off the patch. I had heard about how dangerous Xyrem is and I understood. But how do I go off the patch when I have Fibromyalgia, severe osteo-arthritis, nerves that still hurt from decompression surgery, and failed back surgery? Oh, yes, and a knee that needs replacing. Help

[robysue]

You're on the fentanyl because of serious pain issues. And with fibromyalgia, severe osteo-arthritis, nerves that still hurt from decompression surgery, and failed back surgery, pain is going to be a major issue. Is the fentanyl properly managing the pain? If it is, I think that you'd be better off working with the doc(s) to come up with a different plan to deal with the daytime sleepiness and the erratic sleep cycles rather than attempt to wean yourself off one of the most powerful pain meds around if the fentanyl is doing a good job of managing the pain. But you might also want to talk to the doc who prescribed the fentanyl about its side affects. Is there any chance that some of your daytime sleepiness or your problems sleeping at night could be a side effect of the fentanyl? That's a question that the doc who prescribed the fentanyl should be asked.

And also note: Xyrem is extremely expensive and your insurance may balk at covering it anyway. Back in January 2013, my psychiatrist and my sleep doc both wanted me to try Xyrem because of repeated wakes during the night and other evidence of erratic sleep cycles. But my insurance company refused to pay for it. We filed an appeal. And lost.

[Kate]

Robysue,

That's terrible that they refused to fill it. I'm sorry...that's so frustrating. How much is it and could you use lesser amounts of the Xyrem?

No, the pain is not controlled with the fentanyl. Since I have used it since it's inception, my body has just adjusted to it. My pain doctor won't help, so I am going to see someone else about it. I have been told that the doctor has to do a lot of math and different charts to change me over from fentanyl to another medication in increments. Not many of them want to bother with it.

Kate

[me50]

fentanyl is an opiate and opiates, as I understand them, can cause difficulty in breathing.

[robysue]

Robysue,

That's terrible that they refused to fill it. I'm sorry...that's so frustrating. How much is it and could you use lesser amounts of the Xyrem?

Xyrem is a highly controlled substance that is available from one pharmacy in the US. (Yes, you read that correctly, all Xyrem prescriptions go through the same place, or they did back in January 2013.) The list price was something in excess of $3000 per month. And the dosage that was planned was the minimal starting dosage.
My insurance company pays for Xyrem coverage only if you are diagnosed with narcolepsy. And I don't have narcolepsy, and that was the official reason for denial of coverage. And even then they require pre-approval.

For anybody who is seriously considering starting Xyrem, it's worth understanding that the Xyrem dosing regime is not exactly straightforward. The drug has such a short half life that I was told my dosing instructions would include the following:

• Before going to bed, you must prepare a second dose of Xyrem (it's a liquid) and have the second dose on the night stand.
  
  
• Set an alarm for about 2 1/2 hours after going to bed (or equivalently about 4 hours before morning) to make sure that I woke up to take the second dose of Xyrem.

All in all, the more I learned about Xyrem, the less disappointed I became about the insurance refusing coverage. I still wish I'd had a chance to try it since it may have saved me some 8 or 9 months of serious Insomnia Wars, but at this point, my insomnia is (finally) being reined in by much more conventional methods.

If you really are curious about learning just how strong (but also how short acting) Xyrem is, it's worth reading http://www.xyrem.com/images/Xyrem_Med_Guide.pdf even though it is published by the makers of Xyrem.

No, the pain is not controlled with the fentanyl. Since I have used it since it's inception, my body has just adjusted to it. My pain doctor won't help, so I am going to see someone else about it. I have been told that the doctor has to do a lot of math and different charts to change me over from fentanyl to another medication in increments. Not many of them want to bother with it.

Pain is a hard thing to manage. And the pain itself might be one of the things that is causing problems with the erratic sleep cycles. It can be difficult to get and stay asleep when you are dealing with serious pain issues.

Fentanyl is usually considered one of the "last resort" drugs for managing pain. Have you ever seen a pain specialist? Or is the pain medication primarily handled by person treating the fibromyalgia or one of the other conditions?

Has a doctor ever suggested "tag teaming" pain meds? In other words, has a doctor ever suggested using two very different pain meds that work in quite different ways? Fentanyl is an opiate; has anybody ever considered having you take something that's a non-optiate pain killer along with the fentanyl?

Best of luck in coming up with something that will effectively deal with the pain you're in.

[robysue]

fentanyl is an opiate and opiates, as I understand them, can cause difficulty in breathing.

Fentanyl is also one of the most powerful pain relievers available and it is usually NOT prescribed to a patient if anything less powerful has proven to be effective in managing the pain. The fact that Kate is on fentanyl indicates that the level pain she is in is pretty substantial. She needs something to manage the pain just as much as she needs the PAP machine.

[me50]

I am familiar with fentanyl. We have 2 family members that took it. It requires careful monitoring of the person that is using the patch or by the person using the patch.

[zonk]

fentanyl is an opiate and opiates, as I understand them, can cause difficulty in breathing.

Fentanyl is also one of the most powerful pain relievers available and it is usually NOT prescribed to a patient if anything less powerful has proven to be effective in managing the pain. The fact that Kate is on fentanyl indicates that the level pain she is in is pretty substantial. She needs something to manage the pain just as much as she needs the PAP machine.

From Mayo clinic: http://www.mayoclinic.com/health/central...ION=causes
Drug-induced apnea. Taking certain medications such as opioids — including morphine sulfate (Ms Contin, Avinza, others), oxycodone (Oxycodone HCL, Oxycontin, others) or codeine sulfate — may cause your breathing to become irregular, to increase and decrease in a regular pattern, or to temporarily stop completely.

Edit: http://www.apneaboard.com/forums/Thread-...SV-machine

[me50]

fentanyl is an opiate and opiates, as I understand them, can cause difficulty in breathing.

Fentanyl is also one of the most powerful pain relievers available and it is usually NOT prescribed to a patient if anything less powerful has proven to be effective in managing the pain. The fact that Kate is on fentanyl indicates that the level pain she is in is pretty substantial. She needs something to manage the pain just as much as she needs the PAP machine.

From Mayo clinic: http://www.mayoclinic.com/health/central...ION=causes
Drug-induced apnea. Taking certain medications such as opioids — including morphine sulfate (Ms Contin, Avinza, others), oxycodone (Oxycodone HCL, Oxycontin, others) or codeine sulfate — may cause your breathing to become irregular, to increase and decrease in a regular pattern, or to temporarily stop completely.

Edit: http://www.apneaboard.com/forums/Thread-...SV-machine

what Zonk said. The hospital overdosed our child on doctor prescribed opiates and our child did not survive. That was just the first thing they did wrong but if a hospital makes mistakes such as this, you can imagine what a patient might accidentally do. The opiates that our child was taking caused breathing to drop then cease as well as stopping the heart. Vicodin is bad as well. BUT, when a patient needs help with pain, something has to be prescribed.

[Peter_C]

I too am in Pain MGNT and have been a hosehead for many years. While which med is best for who is a discussion unto itself, the issue to discuss here is how it relates to OSA and it's treatment.

I've chosen to add a recording Oximeter to my list of equipment (CMS50F) as I have other issues to create concerns about my O2 levels besides OSA and Pain meds. You may wish to see how your O2 levels are doing while asleep as well as keeping a close eye on your AHI numbers.

Have you had a recent sleep study while on your pain meds? It's not clear to me when you last had one done. I've found that some Pain Docs are more up to speed about sleep apnea than others are, and I think your idea of possibly changing Docs at this point may be a good one. If the Pain Doc is not willing to either vary your dosage or try you on a different med (am not sure what is appropriate for you) then looking for a new Pain MGNT team may be your only option.

I've personally had great success with Cymbalta to assist with my nerve pain - I wonder if you've by chance tried one of these types of meds as well?