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Newbie - any Nucynta users?

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Posted 2/7/2013 1:26 AM (GMT 0)
Hi All -

I will be posting this in the Lyme forum as well (probably just cut and paste it, actually) so if any of you are on there as well, sorry for the duplication.

I'll sum up my issue (well, one of them anyway smilewinkgrin) like this:

I am a 47 year old, happily married father of 4 small children (got a late start on marriage/kids). In the past 10 years I have had 10 surgeries including both hips replaced (in '02 and '04), my left shoulder replaced ('11), carpal tunnel and trigger finger in both hands, a subacromial decompression of my left shoulder, two pre-cancerous cysts removed from my neck ('04 and '06). I was diagnosed with Lyme disease in 2006 and haven't felt well/pain free for as long as I can remember. My left hip is causing me a lot of pain and I am seeing another Orthopedic Surgeon on the 14th of Feb. I am also scheduled to see a Rheumatologist at the end of March. Last September I had my T1 & T2 vertebra fused as the nerve was being pinched by the joint. Despite it being over 4 months post-op, I continue to have significant pain and am using a TENS unit almost non-stop (my wife tapes it on in the morning and I leave it on all day) Had another CT scan last Friday (1/1/13) and saw my Neurologist on Monday (1/4/13). He said my continued pain is most likely caused by the obvious degeneration of my C 5-6-7 vertebra. He basically said I need to suck it up and learn live in pain (handfuls of Ibuprofen do little unless accompanied by 2+ Percocets - and I have to take them every 4 hours, not 6 as he prescribed). He said my tolerance to pain meds will increase and I will end up basically a junkie on Fentanyl patches, walking around in a stupor. I understand his reasoning and appreciate his concern but these highly educated, intelligent doctors have most likely never experienced pain, day after day, month after month, year after year. Enough with the soap opera drama.

Anyone know anything about Nucynta? The ENT who is working with me (and seems to be the only one who actually gives a darn and wants to help me find answers) thinks it might work well for me. At this point, I just don't know what the hell to do. Any constructive input would be appreciated!
Posted 2/7/2013 1:47 AM (GMT 0)
Hello Magic & welcome to the chronic pain forum. Hopefully you will get the answers you are needing.

I am short on time right now, but you may want to use the search feature here at the forum. I think you will find some posts about this medication.

Good luck......Susie
Posted 2/7/2013 1:50 AM (GMT 0)
Hello magic and welcome to the Hw forum. Sorry to see another Cper but nice there is a place for us to come together and share what non-cpers have a hard time understanding.

I'm not nor have been on the nucynta but others here are and I'm sure they will be along to answer whatever questions they can.

Just wanted to stop in and say hi and welcome you to the forum.

Vickie
Posted 2/7/2013 2:43 AM (GMT 0)
Hi magic, I wanted to say hello and welcome you. I'm sorry to hear about your pain but I definitely know how you feel. I have not taken nucynta. I have taken exalgo and that's very similar. It was ok but didn't work near as good for me as the patches do. I am on fentanyl patches and I have been for five years. I found for me that I can wear a fentanyl patch and have no side effects. The only thing I have had from them is sweating. They help pain very well. For me I have never felt in a fog from the patch. I can't tell even tell I'm wearing it. It's great!!! I use morphine ir for break through pain also. Just wanted to welcome you and let you know that fentanyl is not all that bad. Hope I was of some help.. Janet
Posted 2/7/2013 3:11 AM (GMT 0)
Hey Magic,

Welcome to HealingWell and the CP forum.... I also have a big family.... and several health/pain issues.... so I understand all the stresses that come with this.

Ok.... so you asked for my constructive input - so here goes nothing, lol :)

While narcotics aren't the only answer to chronic pain... they certainly help manage many people and increase their quality of life. So the "sucking it up and learning to live with the pain" sounds good in theory... but unrealistic for many w/ CP issues.... especially if you are working, have children to raise and a life to live.

Yes, tolerance *can* happen over the years.... but being on some level of narcotics doesn't mean you will progress to fentanyl... and even if fentanyl became necessary at some point - I surely don't think you will be walking around in a "stupor", etc.

Sorry.... but these things irritate the heck out of me.... They are scare tactics to turn people away from narcotics -- probably because the doctor doesn't want to script them OR the doctor is uneducated about pain management.

Most of the same doctors that say these type of things.... would be the first in line for pain meds if they had daily, debilitating pain.

All that said -- have you gotten a referral to a true pain management doctor?? This would be my first piece of advice. A good PM doc will help you manage your pain via narcotics, nerve meds, muscle relaxer, injections and on down the line.

I see you are going to see a Rheumy doc at the end of March.... they can also help with pain management.... but, again, it seems like you have long-term pain issues.... and I would really recommend pushing to see a pain management doctor.

Re: Nucynta.... that's one med that I haven't been on (and I've pretty much covered just about all of them). I've read mixed things here on the board.... from those that it has worked for.... to those where it did nothing. As Susie said - you can use the "search" feature in the upper right side and search it out - and see past discussions. Hopefully, someone that has used it before will come along....

Anyway, welcome here to the board. The people here are very supportive and encouraging - and a wealth of "real-life" information. I hope you'll find it that way, too....

--Tina
Posted 2/7/2013 6:48 AM (GMT 0)
Hi MagicRat, welcome to the forum. Sorry for the long list of problems that brought you here. I took Nucynta for a few months both before and after having my back surgery in September. To date, it covered my pain the best of all the medications I've tried, though it was a lot more unpredictable than anything else too; I'm unable to take long acting medications orally, so I have to take immediate release meds, and the Nucynta would last for 3-4 hours in my system at the most, please keep in mind that I had a gastric bypass, so my digestive system is far from normal.

To clear something up, Nucynta and Exalgo are not even close to the same, as stated by another member, Exalgo is an extended release form of Dilaudid, or hydromorphone. Nucynta is a metabloite of tramadol, though, tramadol for me was like taking sugar pills, the Nucynta was even more effective than oxycodone.

Just a couple of things about the Nucynta, it took about two weeks or so for it to build up and really take effect on the pain. Also, those first couple weeks, was accompanied with a slightly detached feeling, mentaly. The other thing, the Nucynta is on the pricey side if you don't have medical insurance.

Well, I thought it was an awesome medication, not everyone has great results with it, as with any medication. If your doctor recommends it, it is defenately worth a try. I hope you are able to get some relief from something, keep us posted on how you're doing, and feel free if you have any questions, or just want to chat or vent. Take care.
Posted 2/7/2013 6:49 AM (GMT 0)
By the way MagicRat, I didn't see you post anything about seeing a pain management specialist, are you or have you been seen by one? It is definately something to consider doing if you haven't.
Posted 2/7/2013 5:06 PM (GMT 0)
Thanks to all for the warm welcome and words of support. Even though I have been going through this for 10+ years. The pain started before that, that was just when I had my first surgery - right hip replacement and I was 36. The Ortho told me I had had a slipped femoral epiphysis when I was a kid and over the years the cartilage just wore away. I guess I subconsciously overcompensated for it and that effected the left hip. Had that one replaced at 39.

Going to make this a quick post as I have 4 small children, two of whom are home. I will be back on later. Both my wife and I have some sort of bug, maybe the flu (and I got the flu shot) and feel lousy.
Posted 2/7/2013 5:19 PM (GMT 0)
MagicRat, when I first opened this thread, there where no responses. By the time I got to the end, there were already so many. I do not know much about what you're posting about (your condition.) but you are always welcomed to the HW forums and the Chronic Pain groupies welcome you.

You should scan some of the other boards (even if they aren't your condition) some of them might be able to relate to something you feel or some medication you're on. I'm sure a lot of the Chronic Pain people also float around the Depression forum, so visit there too if you ever feel down.

- Rainy/DD
Posted 2/7/2013 5:32 PM (GMT 0)
Just FYI but Nucynta is Tapentadol and even though it may mimic the properties of Tramadols metabolite D1...it is not the same medication at all.

Nucynta is 18 time stronger than Morphine and they activate different CNS functional activities.

Tramadol is a very weak u-opiod receptor while Tapentadol (Nucynta) is several-fold mu opiod receptor.

That is why Nucynta is a Schedule 2 and Tramadol is not.

Just wanted to make sure that people understand the difference and know that it's best to try any new med that is offered by their Dr. as it has been helpful to many people but it takes about a month, just like most medications, to minimize any side effects and see how it really is working on your pain level.

I definitely agree that you should be seeking out an actual Pain Mgmt. Dr. as they are Board Certified in this and can offer the best range of treaments both medicinal and non to help with your chronic pain.
Posted 2/7/2013 8:09 PM (GMT 0)
Thanks for the clarification Snowbunny, I wasn't trying to imply that Nucynta (tapentadol) and tramadol are the same medication, only that they are derived from the same source; though, comparing their effectiveness, it's like comparing a Geo (made by chevy) metro to a Corvette Stingray lol. They may be made of the same materials and by the same people, but there's no comparison in performance.
Posted 2/7/2013 8:19 PM (GMT 0)
No worries...just didn't want anyone reading thinking if they have tried Tramadol before, that this wouldn't work for them...

Always appreciate your knowledge on things:)
Posted 2/7/2013 9:06 PM (GMT 0)
Hahaha... yup, I'm retarted... I almost forgot to put why that's even slightly important.... What I have been told about Nucynta, if you have had a bad reaction to tramadol, there is a possibility that you could have a reaction to Nucynta. This is what I was told by the PM, though I don't remember reading it anywhere.
Posted 2/7/2013 9:16 PM (GMT 0)
Hmm...I haven't seen anything like that as they are chemically different...the only thing that "could" be an issue is with the Serotonin Syndrome and watching it mixing with other meds...so maybe that is what you are referring to.

I was actually on Tramadol and Cymbalta for 3 years together and never had an issue!! But they didn't really know about SS back then much either...

So...just like with ANY new medication....always run a med interaction check with your (collective you) Pharmacy/Pharmacist..

Personally I give any new med a 100% try and beyond doing the med check at the Pharmacy, I try not to pay attention to how it works or doesn't work for others as we are all too different as well as I believe the mind is pretty powerful on convincing us of things beforehand so I try think, "This med will work for me!" LOL
Posted 2/7/2013 9:59 PM (GMT 0)
Hi All (again),


No, I have not sought out a PM doctor but am about to do so. When I started this "journey" 10 years ago, I had no idea how crazy of a ride it would be and I still have no idea where it might lead. I just know I wake up in the morning aching/hurting all over. Doing simple things can cause a new pain. I was trying to get a small Mag Lite flashlight open yesterday and now my left hand hurts a lot. As I said, I pretty much live with a TENS unit on my neck these days. I have to see an Orthopedic/Spine specialist next week because my left hip (replaced 8 years ago) - I guess I'm going to have to edit my "signature" to add all this as most of you have done so I don't have to repeat myself. Anyway, my left hip is having major pain issues again.

Nucynta was suggested to me by the ENT who has removed 2 precancerous cycts from the right side of my neck ('04 and '06) and has ordered the Ultrasound I am having tomorrow on the left side. As I mentioned before, she is the only one who has shown interest in helping me figure out what is going on and hopefully abate some of the symptoms - including chronic pain. I have 4 small children, 18 mos., 3, 6 and 8. Most days I feel 87, not 47. Melodramatic? Maybe, but it's also the truth.

I hope the suggestion about the Depression thread wasn't a hint that you think I do not belong here. I wouldn't blame you if you did as I am sure sites such as this attract all sorts as well as those with legitimate problems.

Going to go modify my signature now. I live in the Boston area and we are all bracing for 16-24" of snow.
Hope you all are doing well/better!

Post Edited (MagicRat) : 2/7/2013 3:51:13 PM (GMT-7)

Posted 2/7/2013 10:10 PM (GMT 0)
We appreciate you sharing more...

Many of us with chronic pain have suffered with or still suffer with depression. There is nothing "whack job" about it and someone who has this is not any less of a person. There is situational depression and other types that are more long term with an actual chemical imbalance.

I actually find that it's a big insult to say "nut cases" as well and hope you will delete that out of your post.

So, the suggestion for you to check out other boards was truly a helpful one. I haven't taken any medication but I attended counseling close to 6 months after my divorce so that I could work with my counselor adjusting to this "new" life of having chronic pain.

For many of us, it has changed our lives drastically from what we can do physically each day, to whether we can hold down a job or not, as well as many relationships change due to this.

Living with chronic pain, day after day, year after year, is life altering. And if it hasn't been for you yet, then consider yourself extremely lucky.

The reason we suggest seeing a PM is that these days, things are getting much tighter and more strict with both the state and the DEA. So, an ENT will most likely not be able to prescribe Nucynta for you as it is a controlled medication.

As well as treatment for CP is about using every modality possible to help and a PM specializes in this.

I hope that you are able to prepare for the possible storm. And hope that you will readjust your thought process about those who suffer from depression. I lost a very close friend as they unfortunately did not get the help they needed and found it too much to bear.
Posted 2/7/2013 10:40 PM (GMT 0)
Magic,

Snowbunny pretty much summed up my feelings..... maybe you've not dealt w/ depression before and you just don't know about it....

But chronic pain goes hand in hand w/ depression. Depression and mental illness runs in my family, too. As SB said - it's a chemical imbalance and an illness - just as having diabetes, heart issues, etc.

Just FYI :)

---Tina
Posted 2/7/2013 10:48 PM (GMT 0)
Snowbunny -

I am SO SORRY. I did not mean to say depression makes you a kook, I have suffered from both situational and clinical depression for most of my adult life and have had panic/anxiety problems of varying degrees as well. I currently take Prozac and Lamotrigine. I offer a sincere apology to those I may have (probably) offended. I will delete that from my post. I just meant that sometimes there are a lot of people who seek sympathy and do not have the REAL issues at hand. Not trying to minimize anyone's real problems.

Just to clarify, I am also a recovering alcoholic, sober 13 years this March 9th, God willing. I see a lot of people who DO NOT belong in AA but instead really need friends to talk to or perhaps therapy. That is why I mentioned it. Being a sober alcoholic with pain problems is a tricky/hazardous line to walk. Fortunately my wife is sober too and she has almost 20 years sober.

Have to go for now. I feel like crap and the two younger kids are screaming. Take care and again, I am sorry for offending anyone.
Posted 2/7/2013 10:52 PM (GMT 0)
PS - I did edit my post
Posted 2/7/2013 10:55 PM (GMT 0)
Thank you so much for clarifying and editing that part of your post out. It's hard at times with the written word and things just came across the wrong way...

No worries and appreciate you coming back to share more about yourself.

Congratulations on your sobriety! We have a few people on the boards who also share your situation with having chronic pain and seeking out appropriate pain management treatment. There are even some PM Drs. who specialize in this so that is also something to look in to as there are medications these days like the Butrans patch that are helpful for pain and easy to manage.

You definitely have your hands full with those 4 little ones!! One of our Mods, Tina, who posted on this thread has 8 kids!!!

I admire all those who manage their families and their CP...

Again, thank you for the clarification..
Posted 2/8/2013 6:32 AM (GMT 0)
I am on nucynta ER for 4 months. Exalgo did not work for me. I am getting good results with nucynta but I am hoping to taper off it after SCS surgery. I take roxy for breakthrough with it. Any other questions? Btw, there is a discount card for $25 copayment.
Posted 2/8/2013 6:33 AM (GMT 0)
Thankyou for that information Chibi Bunny, we always appreciate better info when someone has the knowledge. I can see you certainly studied in bio-chem lol.
Posted 2/8/2013 7:12 AM (GMT 0)
Nice, I may be enlisting your help when I try to go back to school this fall... Trying to go from mechanic to the medical field, they could make a comedy movie of it by the time I'm done lol, have to take care of my son though.
Posted 2/8/2013 9:01 AM (GMT 0)
Hey thanks Chibi! Yup, I'm in good ol' sunny california, where it's currently snowing outside lol. I have 97 units right now, but most of them aren't transferable. My AS is in Welding Technology AA in industrial arts, then about 28 units in law and criminal justice. I'm still second guessing myself on the medical field, I have a knack for retaining otherwise useless information, but I haven't taken a real science class in over 10 years, that was earth science, and I barely pulled off a B- (the teacher was beyond boring lol), although I did get A's in college health, and an A in advanced placement biology in highschool, just not sure if I can turn that side of my brain back on or not, I've been working with machines for so long, and they're far less complex, even the computer boards aren't that complicated compared to the human body.

Yeah I know what the FAFSA is, I got the BOG waiver most of the way through college last time, hoping I can get it again this time, plus it's just me and my son, I'm under the impression that there's some big grants out there for single parents that want to go back to school. I'm going to be setting up an appointment to talk to a councilor at the college next month, guess I'll see what's avialable. Thanks again.
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