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Afraid to take Nucynta

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Posted 2/21/2013 6:19 PM (GMT 0)
Hello All -

After going through hell with a nasty PCP (I'm changing from him) and lots of sleepless nights and non-stop use of my TENS unit (with little effect), one of my doctors has prescribed Nucynta. I am going to see a Pain Management doctor on Monday (provided the snow here in the Boston area doesn't go too late on Sunday - the appt is for 8:30 am). I have to go to the Drs office to pick it up. After reading all the "side effects", I am terrified to take it (Serotonin Syndrome). My wife always cringes when I go to a Dr and they say "in a relatively small number of people X adverse side effects are possible....". I am always the exception (well, usually). Any input would be helpful!

Thanks, Andy
Posted 2/21/2013 6:28 PM (GMT 0)
Hi Andy...

Welcome back:) When you asked about this on your first thread back on Feb. 6th...a lof folks gave you some good thoughts about the Nucynta...

Here is the thread in case you couldn't find it...

https://www.healingwell.com/community/default.aspx?f=16&m=2638196

There is also a thread on Nucynta on the board a few threads down started by the member Bait-Catcher that you can look through as it has a lot of information...

It's really about a trial and error on the meds we take as we can find both good and bad about any medication, treatment, or surgery. And if we spend too much time focusing on the "negative" then we can talk ourselves out of anything! LOL

So, I would recommend trying this medication and see how it works for you.

Keep us posted..

Posted 2/21/2013 6:36 PM (GMT 0)
Thanks Snowbunny - I am going to pick it up today and give it a try. I will be sure to post back later with at least the news on side effects.

I will also go back and re-read the thread to my first post. It has been a rough(er) few weeks as both my wife and I have had the flu as well as our 3 yr old and 19 mo. old.

Thanks again!
Posted 2/21/2013 6:44 PM (GMT 0)
Sorry about the flu.....Did any of you get the flu shot? Or just bad luck to all catch it anyways:(

Just try to keep in mind that many meds will have some nuisance side effects but most will go away within a few weeks to a month. When I first started another med, MSContin...I had some pretty awful nausea as well as fatigue...but it all went away and I've been on it for years now.

Be sure to stay well hydrated (I personally drink 12-14 glasses of water a day) which helps keep headaches at bay which can be caused from new medications...

I think having the appropriate expectations is also good in that any medication we take is only meant to be just one of many things we do to get our pain levels to a decent level.

I hope that you are one of those who is helped by this med!
Posted 2/21/2013 6:54 PM (GMT 0)
Yep, got the flu shot as did all four of my children. My wife didn't though. They told me people who got the shot will have less symptoms/less severity but it's been a few weeks and I am just winding down with it. Not sleeping much though.

I'm hoping if I can just get the pain on a manageable level (I've had worse but it is still very painful/uncomfortable), that I will be able to get ahold of my life. Seems like it has been out of control for as long as I can remember. I'm sure I am not telling you anything you don't know or haven't experienced!

I'll check in later.

Thanks!
Posted 2/21/2013 7:03 PM (GMT 0)
It's so hard in a large household when one gets sick, unless you can lock them away in a closet for those few weeks until better...LOL....it gets to everyone...

We all definitely understand what it's like to just want to get to a place where our pain is manageable on a daily basis!
Posted 2/21/2013 7:11 PM (GMT 0)
I've had so many bad side effects from medications...and I've had to try so many, that when my dr suggested trying Oxycontin I was really hesitant.

But in the end, my trust in her won out and I gave it a fair shot. Turns out its the absolute best long acting medication for me in terms of the ratio of side effects to pain relief. Sooo glad I gave it a shot.

I think, if theres any chance at all a medication can improve our quality of life, we should probably give it a shot. (as long as there's not a deathly allergy or something!)

It could turn out that for you, Nucynta is *that* medication. You won't know till you try.

I have heard it can take up to a few weeks for maximum pain relief to set in, so don't panic if it doesn't work very well right away. Try to stick it out because I've heard that it works wonders for some people.

If it doesnt work, theres always another option out there to try. What have you tried in the past?

Definitely keep us posted on how things are going. :)
Posted 2/21/2013 10:14 PM (GMT 0)
Hi Andy, I wanted to say that anytime anyone starts a new medicine that they as well as the family living with them just needs to be cautious and observant.

It matters not whether it is a narcotic or a vitamin. Everyone has the potential to have a reaction that can range from mild to fatal anytime we ingest even new foods.

When I first started the methadone way back when there had been all kinds of deaths related to overdose or interactions with other meds.

My kids had a fit!!! They made me take half the ordered dose the first time,they took turns watching me sleep every night until I got to the ordered dose. Drove me nuts.

It however turned out to be my lifesaver instead of robbing me of it.

So you never know and if it makes them feel better let them keep an eye on you for whatever side effects they are worried about.

Vickie
Posted 2/22/2013 1:20 AM (GMT 0)
Good evening Andy! I understand your fears especially if you have had problems with other meds. I have done very well on Nucynta the last several months, however lately my lumbar pain has been returning and I believe the Nucynta has out lived its welcome to my body.

It is said that the narcotic part of the med is similar to morphine, which is odd for me since I have never done well on morphine. The Nucynta is a duel purpose med and the other part of it is to treat nerve damage. This is the part that I have struggled with a bit as I notice that it messes with my head, similar to the experience I had with Cymbalta.

It is a med that I believe you will have to try for a couple of weeks or more to see the maximum effect. It may fool a patient at first, and one might think that there is no relief, as happened to me, but I was quite surprised after taking it for 3 weeks or so. It has been one of the most effective meds to date.

Again as noted many, many times here on the forum, we are all different, so please don't take it that this is a wonder med for all. It is not! If you have discussed this with your Dr and he knows your history of pain med side effects, and he still recommends a trial of it, then by all means give it a try.

When my Dr is changing my meds, he has me come in every two weeks instead of 30 days until we see what is being tried is working well. Maybe yours does this as well?

Good luck!…and please feel free to ask more questions if needed. We are here to help!

SE
Posted 2/22/2013 1:55 AM (GMT 0)
Thanks to all for the words of encouragement!

Well, I took my first dose of Nucynta 50 mg ER (2 x day) a few hours ago and haven't turned into Mr Hyde or anything yet turn

So far I can't tell what is going on - but I do realize it could take a few weeks for it to work (or not). I was also taking Etodolac - a prescription anti-inflammatory - but will not take it anymore as all it did was make me really nauseous and apparently not much else. Haven't slept well in a long time either (almost not at all the last few nights). I have my TENS unit buzzing away right now so hopefully I will get a good nights sleep and can report back tomorrow with a better informed opinion of the side effects at least.

Idid make an appointment with a PM Dr for Monday at 8:30 a.m. Hopefully the latest big storm won't go too late on Sunday (that'll be a test to see how well this works, when I have to dig out from another 10-16" of snow shakehead ) My boys (the two oldest are 8 & 6 - we also have a girl, 3 and another boy 18 mos. LOOOOOVE them all) have been on February vacation all week and won't be bummed out if they get another day off!

On a totally unrelated note, my wife and I saw "Parental Guidance" at the movies the other day. Billy Chrystal and Bette Middler - if you need a good laugh (and a little cry - yes, I'm man enough to admit it) and I suspect all of us can use a good laugh, it was a GREAT movie. Have a great night all!
Posted 2/22/2013 2:18 AM (GMT 0)
Hello again Andy!….I had to come back and wanted to let you know that the max dose per day is around 700mg, so at 100mg, you are starting on a very low dose there. Can you share with us what dose and type of previous med you were taking before starting on the Nucynta? One thing I see Dr's doing over and over again is not referencing the correct starting dose based on what the previous med was.

If you are not getting any relief, I would see if your Dr will raise the dose up before giving up on it, as long as you are not having problems with side effects.

I also see that you have been diagnosed with Lyme disease, and I know for a fact that it causes lots of problems for patients. We have a very good forum here on HW just for Lyme. Take a peek at it, and maybe introduce yourself there as well.

Take care!

SE
Posted 2/22/2013 3:06 PM (GMT 0)
Hello All -

Thanks for the info SE. Any immediate effect I thought I felt must've just been a combination of being exhausted (still am), the nausea I was feeling from the Etodolac and whatever the Nucynta might've done. Didn't last long either. I know it might take a while to work (if at all) and now know I am on a low dose, so I guess I shouldn't have expected much.

My history with chronic pain has been rather odd. Started with the need for hip replacements in my late 30's (36 & 39) and then a series of smaller things like carpal tunnel and trigger finger surgeries. I also had a couple of precancerous cysts removed from my neck and the ENT that removed those is convinced I have an autoimmune disease as well as continuing effects of Lyme. Unfortunately, she is the only one who either seems to believe me and/or care. They tried allergy testing but my body reacted pretty quickly and strongly on the pre-testing so they stopped the testing. My blood pressure has been up lately (never really had a problem with it) and was very high that day (153/103). So, now I am on Lisinopril for the HBP. Only 10 mg a day but I don't want to deal with my PCP - he's a real jerk, have to switch PDQ. Until recently I was taking Percocet 4 times a day which was ok. I've kind of accepted the fact that I will never be pain-free again in my life. This was prescribed by my Neurosurgeon after I had my T1&T2 fused in late September. He said he couldn't understand why I was in so much pain still but ordered another CT scan and after that said my C 5-6-7 were degenerating too and that was likely the cause. At the same time he said he didn't want to continue prescribing pain meds due to increasing tolerance but said he would if I really wanted. Then last week I called to get a refill and he said no, I needed to go through my PCP and/or pain management - nice he gave me some notice, huh? Saw my PCP and he was a complete ******* about it. Said he wouldn't prescribe Percocet long term for a 47 year-old. He prescribed one 7.5/500 Vicodin twice a day which was/is ridiculous. I burned through that in a week and tried to get an appt with pain management, which I couldn't get until Monday. So, I called my ENT and told her what was going on and she prescribed the Nucynta. Last week I saw another (new) orthopedic surgeon who said the pain I was feeling was from my back and that my hips looked fine (X-ray). He also said he would prescribe pain meds but that he was retiring in a month so he didn't want to because of that.

So, I will have to wait and see the Pain Management people on Monday. This weekend is going to be horrible. And now, to top it all off, my poor 6 year old is sick again (100+ fever, sore throat and nausea and my 19 month old has a double ear infection. Are we having fun yet?

Sorry for all the complaining folks, but I'm sure most of you understand. Hopefully we won't get snowed in too badly here in the Boston area :-(
Posted 2/22/2013 7:15 PM (GMT 0)
SE...

In your post, you mentioned that the max daily dose is about 700mgs...for which version?

When I was doing some research on it, to see if it might be an option for me to try...the Nucynta website says the max dose for Nucynta ER is 500mgs a day (250mgs every 12 hours).

But the max daily dose for Nucynta (non ER) is 600mgs.

Do those of you who have been taking it have any idea why the max daily doses are different between the IR and ER versions?

And is the recommended dose just a vague guideline?

Theres no recommended conversion between OxyContin and Nucynta ER, so I'm just wondering how much leeway I would have if I switched.
Posted 2/22/2013 11:40 PM (GMT 0)
Good evening Lexi!…you know you might be right, and when I looked up the information on it I don't recall which one they were talking about…but I did remember the 700mg number in my research. There is not a ton of information or patient information on it, as it is a couple of years new to the market I think.

Patients will do best to discuss this med with their Dr and go the the Nucynta sight for more information. Thank you for pointing that out for us all!

At the moment I'm on both forms of the med at 400mg a day, and I'm quickly becoming tolerant to it. Its a real shame too, as this has been a wonderful med for me the last several months. My options seem to be running out here, and makes me a bit worried as I have had a terrible time finding a med that will give me enough comfort to work…and actually that may be my biggest problem. My Dr keeps mentioning SSD, and I have talked to a couple of Lawyers as of late…but I just hate to give up my career at this point.

It might be worth noting that this med is expensive over the counter if you have to buy it outright.

SE wink
Posted 2/23/2013 12:03 AM (GMT 0)
Just FYI but there is the website which tells all the needed information...(Obviously I am not promoting this med...just sharing information for those on it or thinking of going on it)

http://www.nucynta.com/home

You guys are both right! LOL...

With the regular Nucynta...the max dosage on day 1 is 700mg and then all subsequent days is 600mg.

For the NucyntaER, the max dosage is 500mg.

Posted 2/23/2013 12:39 AM (GMT 0)
…I just knew you would come up with the correct answer Snowy! wink Good Job!

SE
Posted 2/23/2013 2:16 AM (GMT 0)
I have done extensive research on Nucynta, both empirical (factual) and anecdotal. I am no Dr. but. all I have to say about it is Don't Take It. I have read at least 100 posts from reliable boards as well as contacting the American Association for Pain Medicine (AAPM) and the serotonin syndrome is much more common than Nucynta's manufacturers would have you believe. Nausea, migraine type headaches, and seizures are all reported side effects of this overpriced and overhyped drug.

Post Edited (quincy17) : 2/22/2013 7:19:18 PM (GMT-7)

Posted 2/23/2013 2:27 AM (GMT 0)
Lol. We make a good team SE!

It seems like people start pretty high...dose wise. What did you start at? How long did it take to get to this point where you feel tolerant?

My biggest worry when starting it would be that I would quickly reach the cap and then be stuck...
Posted 2/23/2013 2:28 AM (GMT 0)
Hi there Quincy....Welcome to the Chronic Pain board..

To my knowledge Serotonin Syndrome usually occurs when two or more medications are mixed together....As in certain medications do not mix with certain antidepressants that all work on the similar receptors. This is where our Pharmacists come into play and anyone adding a new medication should run this by your Pharmacist to check for interactions.

I happened to take both Cymbalta and Tramadol for close to 3 years and never had any issues but now many Drs. say to not mix these two together.

Just like with any medication, treatment, or even surgery, everyone is so different that telling someone to "NOT" take a med is not the way that these types of boards work. It's fine to share your own story with it and that it may have not worked for you, but we have quite a few people on here who have had good success with it.

Side effects (like you mentioned minus the seizures) are common with most meds and usually end up going away after a few weeks to a month.

As well as most everyone with chronic pain recognizes that any one medication is not meant to take all the pain away and it's just one small piece of the puzzle and there is so much more to pain management.

If I'm not mistaken you are over on the Prostate Cancer board? We also have another member, Purgatory (David) who posts on our board as well. I am sorry that you have been diagnosed with PC and are fighting that battle.

So as you know in that journey, it's the same thing where one person may have a good experience with a treatment and then another may not....but that doesn't mean that everyone should avoid it.

That's also the downside of the internet as you will find close to 85% negative to the positive about pretty much anything from medications to buying a certain washer/dryer!

Again, we are happy to have you over on this board and can certainly empathize with the chronic pain aspect of your life. But as you mentioned, since none of us here are Drs., it's really up to each person to work with theirs and try different medications/treatment to see what works best for them. I'm glad you have found what works for you:)

Post Edited (Snowbunny21) : 2/22/2013 7:34:33 PM (GMT-7)

Posted 2/23/2013 2:34 AM (GMT 0)
LOL!…I started out at the 100mg X4…and I believe I have been there for at least 4 months. However, the IR form was not getting me through my working hours very well and would fizz out at about 4hrs leaving me 2 rough hours during work. We went back and kept the total dose the same, but switched to the ER for my working hours. It worked for a short while, but I had the same sort of problem and got only 7 to 8hrs of relief.

Again, it has been a great product for me. My sister with similar health and CP problems has also been on this med, and with decent results as well.

Lexi, I just will not allow my Dr to keep upping a med over and over, so I'm thinking we will be on to something different soon. I have struggled with several different meds, so this is again a worry for me, and working all along…been difficult.

I have visited with a Pump Dr, and after several weeks, my Dr finally spoke to him by phone. He has agreed to do the trial pump when ever I'm ready again. Today….I would say I'm ready…but as long as I can keep from it and the possibility of something else working…I'm avoiding it. Some of my decision has to do with insurance and other factors as well. Time will tell….but man!…this constant pain and adjustments to stay simi comfortable is getting old!

SE
Posted 2/23/2013 1:39 PM (GMT 0)
I agree that I Cameron too strong, Ihave a particular bias againstNucynta that would take more time than i's worth to explain. I should have known better than to let my biases overtake the impartiality that Itry to always express. Apologies all round . . . Q17

Post Edited (quincy17) : 2/23/2013 7:59:29 AM (GMT-7)

Posted 2/23/2013 2:03 PM (GMT 0)
….no problem Q17!….I'm familiar with some of the side effects you mentioned, however!…for pain management this has been the most effective and worth the side effects. Is that supposed to urge a CP patient to try it……no not really, just sharing my own personal experience.

I can see where a patient can be somewhat bias,…given they had a horrific experience..either from personal experience….or knowledge of a close friends experience.

Have a great weekend!

SE
Posted 2/23/2013 2:21 PM (GMT 0)
Hi All -

As I said before, my Dr started me at 50 mg ER twice daily. Didn't seem to do much so I called her back yesterday. She was in surgery and by the time her assistant got back to me, all she said was to up it to 100 mg twice daily. I haven't slept well in a long time and the past few nights it's only been an hour, three at most (and this started before I started taking Nucynta). At any rate, i know it could take a few weeks -and probably a stronger dosage - before and if I see any results. My problem is now that I am still in pain, am exhausted and feeling really "foggy". I don't think it's "Serotonin Syndrome" but then again, how am I supposed to know? Certainly don't want to have to drive like this but my appointment on Monday is about 20 minutes away. Hopefully this (first) appointment with Pain Management will prove at least somewhat fruitful. Maybe the side effects will go away but it hasn't provided much pain relief. Yeah, I know, patience......
Posted 2/23/2013 2:30 PM (GMT 0)
…I had the same problem and reported this to my Dr. It has been one of the most sedating meds I have tried to date…to the point of being mindfully disconnected. I still received very good pain relief with it …and decided it was worth it for pain relief.

Good luck!

SE
Posted 2/23/2013 2:40 PM (GMT 0)
Thanks SE. Does the extreme fogginess abate at all? It does have that detached feeling and I was excited to be groggy last night but STILL didn't sleep. Insomnia alone sucks but combined with pain (and four small children to take care of) it's horrible.

Love your quote of the week, btw :-)
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