Nucynta Update

[marycarmel]

Today is day 11 on Nucynta.  This so far is hands-down the BEST pain relief I have had in years.  But I am still having really troublesome side effects.  They said they would all resolve by two weeks but I'm wondering.  Three more days and I'll know.

I have been seriously anxious/agitated since starting this.  I also feel slightly altered; just not myself.  It's not a sedative feeling or groggy ... just different.  And not in a good way.  I can't sleep more than an hour or so at a time and the dry throat and mouth is bad enough to make it hard to swallow.  There are some minor side effects (achy muscles) that I would put up with since the pain relief is so good, but I just cannot tolerate many more days feeling so hyped up.

I'm very sensitive to meds and I know there are no perfect ones.  I just hope I can figure out which is the best of a bad bunch.  My pain clinic doctor is getting frustrated with me.  And I'm getting frustrated with her because I don't feel she is taking these side effects seriously enough.  Not sleeping properly is causing me to be so impatient with people.

This isn't that common of a drug but if there's anyone who has any experience with it, I'd love to hear about it.

[SomedayFreeofPain]

This has been my experience as well with Nucynta - had a week of being almost certifiably bat-sheets, no sleep, smoking waaaaay too much and very restless.  It has NRI actions, which might be a good indication you already have enough norepinephrine in your body without it.  Like you, my nerve pain is gone & in its place, new muscle aches that are tolerable.  

Hoping the nerve pain is a permanent fix - have not felt this physically good in years and this mentally nuts, ever...

[marycarmel]

Thanks.  Glad the Nucynta is working for you.  I definitely had good pain relief but the side effects were so magnified for me.  Interestingly, the nerve pain in my arm is totally gone and they believe it won't return.  I still have it in the hand and my other pain issues but I'm at a manageable spot.

I find the oxycodone best with the least side effects.  I had been given Dilaudid once after a surgery and it was like taking nothing for me.

[HustleNImprove]

Due to a series of developmentally caused back surgeries, I've been on Nucynta on-and-off (currently on) for a couple years now.

My symptoms are exactly the same as you have reported:
-decreased pain
-slighly anxious (but only if I do not take them at the same time intervals each day)
-restlessness / lack of sleep (but now I take it with an Ambien, so all is well).

The reason that I continue Nucynta, despite the obvious downsides, is that it is simply the best I've come across. I've found Dilodid to be horrible, and percoset and vicodine to be terrifying. Everybody is different, of course, so talk to you doctor and do what you feel is best!

Fight on! (through the pain!)

[marycarmel]

Today I go back to the pain doctor and hopefully we can resolve some things.  If not, I'll be transferring my care to my PCP.  They are just not responsive when things tank.  In hindsight, I NEVER should have felt the way I did for 11 days on Nucynta.  It's been a week off it and today is the first day I can feel that it's completely out of my system.

Interestingly, whatever happened with me on it, it has eliminated a good portion of the nerve pain I've had.  Right now I'm on a low dose of oxycodone and getting pretty good relief for the pain where the joint was replaced.  It's been 4 years and I've never been able to get rid of the nerve pain so this is incredible.  Still, I'd have put up with the pain versus the side effects I've experienced.

I definitely have sensitivities to meds, as did my mom.  And my oldest daughter.  It's seems to hit females in my family.  I'm also sensitive to alcohol and even when I was young, I never liked the feeling and I believe I don't feel the way most people do if they have a drink or two.

I am so grateful for sleeping this past week, even though it's been broken sleep.  My anxiety is back to my "normal" anxiety, which I can deal with.  What I had while on the Nucynta was nothing like I had ever felt before.  More like agitation than anxiety.  Somehow it seemed to effect me in a way that caused me to feel all ramped up.  It was a very unnerving feeling.

Maybe Nucynta is a good drug for some people and I will say the pain relief was like nothing I've ever experienced.

I will talk to them about the Opana.  Though if things continue the way they are, it looks like I'll be able to do just a small dose of a short-acting med a few times a day.

Glad the Opana is working well for you!!!

Tuck, thanks for checking in.  You're in my thoughts a lot as is Mama Sherry ... my best to her!!!  Hopefully when all my drama sorts out, I'll be on more.  (Big issues with the ex, my dad had a bad fall and the usual sort of kids stuff!)

[femmy29]

Hi Mary,

I am so sorry to hear about the terrible side effects that you have been experiencing from the Nucynta despite the great pain relief the medication was providing you.

I don't know how you were able to continue with the Nucynta for two weeks given you could only sleep for an hour at a time.  Sleep is such an important part of the lives of those that live with chronic pain as sleep deprivation has been scientifically shown to make pain symptoms worse.  

I suffer from anxiety disorder so I know how uncomfortable the agitation/anxiety must have been for you, especially to have to endure it for two full weeks!  This side effect is probably the main culprit to your lack of sleep.  

I myself have been struggling with Opana ER but after two weeks, I can say the worst is over and I am finally adjusting to it.  I posted an update entitled "The Opana Experience".  I encourage you to read it and perhaps consider Opana as another option.  I called the post the Opana experience because I received a copay card that came with a little booklet that said, "Patient Experience" and it has been quite the experience...lol!

I think my experience was rough because my doctor immediately jumped to the dose that he knew would be optimal for me and eliminated the titrations up to this dose.  So in the beginning it was really strong and that also made the side effects more pronounced but it has quiet power now that I have adjusted to it.  I would hope your doctor would probably not step up to the optimal strength immediately and perhaps start you on a lower dosage to give your body time to adjust.  The Opana website says titrations can be made every 3-7 days so once you have adjusted and if you need more pain relief, your doctor can step up the dosage after a week.  They also have Opana in immediate release form as well such that you could see how the medication effects you first before being locked into the extended release form of the medication.  

I am extremely happy with the pain relief I am getting from the Opana ER.  I only need 2 percocets in the morning 3 hours before I take the Opana and most days I don't need any additional percocet for breakthrough pain for the rest of the day.  I am somewhat in disbelief over the amount of pain relief I am getting.  My pain over the past 12 years has always been undertreated and I never thought I would see the day when it would be adequately treated.  The road for me was rough as I didn't undergo any titrations to get to the optimal dose I am on.  If you decide you want to try the Opana, when your doctor prescribes the dosage, you could enter the dosage info on the Opana website (http://www.opana.com) and their calculator will tell you the morphine or oxycodone equivalent of the medication.  That way you can see if your doctor did a 1 to 1 conversion to Opana or a titration down or up in Opana dosage.  Private message me and I would be more than happy to help you understand how your dosage compares to the oxycodone you take.  

I hope your appointment with your PCP goes well on 2/3.

femmy

[marycarmel]

Well, it still worked best for pain but the side effects grew worse and worse.  They were extreme and I had to go off it after the 2 weeks.  In hindsight, I should not have put up with side effects like these for one minute.  If anyone is interested, let me know, and I'll give all the details.

For now, back to oxycodone and I am scheduling a visit with my primary care doctor on 2/3 to get her insight on all this.  I trust her most of all the doctors I've seen.

[Tuckamore]

Hi Mary,

I haven't taken this medication so I can't help you will any personal experiences. I can relate to difficultly taking medications and sensitivity. I was blessed to have an awesome physician when doing trial and error to find the right pain medication. She was patient and understood my body's seemingly huge sensitivity to many, many medications. She got it and never dismissed me. I am very sorry that you don't have the same with your PMP.

Some of the side effects of Nucynta include, nausea, dizziness, vomiting, drowsiness, constipation, trouble sleeping, increased sweating, loss of appetite, dry mouth, or stomach upset. The anxiety/agitation appears to be a specific side effect of your system. So figure, right!

In time this may resolve on it's own.... however it also may not. I think if you could sleep it may help your anxiety.

I just wanted you to know that I'm thinking of you and hope you can work through these side effects. ... or better yet that they will disappear in a short time.

Best of Luck,
~Tuck