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I'm miserable & Nucynta
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SecretMe7 posted:
Hi everyone,

I'm having a tough day, so I thought I'd post and vent, and also share information about this brand new drug I was prescribed.

First off, I had fusion back surgery in January 2009. I've gotten myself off the strong drugs - I was taking 80 mgs of ER oxycontin WITH Loratab 10 in between doses. I wanted off that strong stuff so though it was challenging, I did. Lately, I need about 20 mgs of Loratab to relieve my pain. But, I was just switched to a pain management doc who I saw on Friday and he has prescribed Nucynta. It is a brand new drug, just approved in June. It is an opiate, but without acetaminiphen. On Friday eve, I was fine with it and thought it was working ok. But by Saturday, my back pain was noticably worse and I was limping again. Today, I'm near tears and the Nucynta has not helped at all. Added to that, I can now tell I'm in withdrawals - I have continual diarhhea, and a runny nose. I have called my pain doc, and I'm going back to see him around lunch time today.

My back is awful. The sacrum (area top of my bottom), and right sciatic area are BURNING. I'm emotional because I'm starting to realize my life may never be what it once was. I'll probably never be able to be pain free or as active as I was in the past. And I'm only 39 years old. I'm overwhelmed at trying to deal with this the rest of my life. My spine surgeon (neuro) was worried that my thin size would not handle the fusion hardware well.... but he recommends that the hardware not come out until a year post surgery. I do think though, that at this point it's time for another MRI or CT scan, so I'll be calling to inquire about that.

My other issue is headaches. Since a young child, I have suffered from headaches. I then started getting hormonal migraines after the birth of my DD in 2005. For the past 3 days, I've had a continual headache - not a migraine, but a very bad headache. It does wax and wane a little, but it is quite bad and even woke me up throughout the night. It's also giving me "tracers." This is when I move my head or eyes, and it feels like my brain and vision take a few seconds to catch up. The nucynta has eased my headache a teensy bit, but not much. I'M MISERABLE, and I can feel my mental state getting me back to where I was before surgery. Pain sucks.

Anyway, I guess there's not much any one can say, and I guess I don't really have any questions other than wondering if anyone else is on Nucynta and what they think.
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littletwister1963 responded:
Hello, I am curious as to what your Doctor said and or did for you when you went to see them around lunch yesterday.

I am not at all familiar with that new drug you where put on sorry. I sure hope you are now feeling better. Please let me know.

Lori
 
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cweinbl responded:
Nucynta is an analgesic with a norepinephrine reuptake inhibitor. Such drugs can increase the effectiveness of opioids against neuropathic pain and fibromyalgia or possibly diabetic neuropathy. Another example with an anti-depressant is Cymbalta. Another opioid example with selective norepinephrine reuptake inhibitor effects is levorphanol. This drug is somewhere between morphine and Tramadol in potency. Which means that it is NOT one of the most powerful analgesics. It is also a short-acting drug. Most patients with chronic pain are better served with a long-acting narcotic (Kadian, Oxycontin, Fentanyl Transdermal, etc.). We can then use a short-acting narcotic (like your Nucynta) for breakthrough pain.

Here's my take on your problem. You were using a long-acting narcotic that helped. But, for some unknown reason, you desired to stop using it. You say, "I wanted off that strong stuff." OK, Talaine. But WHY? Since you went off it, you have been miserable. Wouldn't you rather be on the "strong stuff" and have less pain? Why would someone want to be in more pain when they can use strong, long-acting analgesics to better manage the pain?

I can tell you from personal experience that my chronic pain would be completely unmanageable without my long-acting analgesic and the short-acting drug for breakthrough pain. So, why not go back to your Oxycontin, which appears to have helped much more than your current short-acting narcotic?

Finally, while I cannot comment with any authority about your headaches, I can say something about your fusion hardware. Metal rods, pins, screws and cages implanted instead of a traditional (bone) fusion entail some risks. There is a potential for the metal to later impinge muscle, tendons, ligaments or even a spinal nerve root - after surgery. That's why I chose to donate my own bone (autologous donation) when I had multilevel fusion (L3 to S1). I've had no problems since with instability. And, of course, I have no metal implanted to impinge nearby tissue. This is one more reason to have several opinions from different specialists before making a decision about having spine surgery. I'm delighted that I have no metal implants.

Talaine ("Secretme"), I encourage you to ask your doctor about going back to your Oxycontin, or perhaps a different long-acting narcotic. Again, I ask why did you want to stop using it before? Many of us here have had outstanding results with Fentanyl Transdermal, the most powerful pain medication. Instead of complaining about "feeling miserable," ask your doctor if you can take control of your pain with a potent long-acting analgesic. Good luck.
 
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smilecd responded:
Hi, I was just prescribed Nucynta last thursday. I had a hard time finding a pharmacy that even had it since it was so new. Ive been taking norcos since january but they havent been helping much lately and that is why i asked for something different. The only problem is I cant take percoset or really much strong meds because they make me sick. So the DR was very excited about this new medication. So i was too. Well, got to the pharmacy and the pharmacist didnt even have any information to send home with it. He said bc its so new they havent even received any of the information to hand out. So i went online and printed out the prescribing info you would normally get. I took my first pill on friday. Needless to say this weekend was the worst weekend of my entire life due to that medication. It no way helped any bit of pain. It actually made me worse. By Monday I couldnt even get out of bed. I was in so much pain it took everything I had to use the restroom. These were the following side affects i suffered just taking the medication from friday thru saturday night. Needless to say I stopped taking it saturday night bc enough was enough. It caused sever migraines, aweful hallucinations, i felt like i hadnt slept in a week but was exhausted and could not sleep. i was very dazed and confused the entire weekend. I suffered that spasm of the sphincter that the side affects talk about. That was horrible in itself. It was like taking a bad laxative and just in major pain from cramping. In one of my hallucinations i ended up dumping every single medication I had in my house even my childrens. I dont remember what happened all i know is i woke up or came to i guess in the bathroom with tons of pills in the toilet and empty bottles and packages all around me. I would never recomend this medication to a soul. It was compared to morphine to me and so i origianlly thought okay i would be a little messed up at first but atleast it would help the pain, but nope it in no way even touched my pain. atleast with the norcos i can somewhat have a life or atleast drive and get up and fix my children something to eat. I pray for anyone who takes this. If it works great but if it doesnt and you suffer how i did. I am sorry for you. I know everyone is different but when i spoke to my drs office yesterday about it i was told that that was odd, they had numerous calls that morning from many patients who suffered basically the same thing i did over the weekend. So, i hope any one who takes this is very careful.
 
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annette030 responded:
I am sorry that you had such a bad time with this especially on a weekend. Was your doctor available by phone to help you at least?

I make it a practice to never start a new medicine until it has been widely prescribed for at least five years. This brings out any weird side effects that may happen. Most drugs that are recalled are usually recalled within that time frame. It does not surprise me that there are problems with a new drug anymore. Drug companies are allowed to just not publish any studies that show problems with a new drug, so there is no way for the consumer to know about them until it becomes public knowledge.

Be sure to report this to the adverse event department of the drug company that makes it.

I know when we are in pain it is hard not to just try anything to get relief. I looked it up when this was first posted, and it was sounded like an opiate/tramadol type drug with a norepinepherine reuptake inhibitor, all in one. I have tried the norepinephrine reuptake inhibitors before and they didn't help my pain at all, so this one didn't look very promising to me when I read about it.

I hope you are feeling better.

Love you, Annette
 
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kidsfulltimejob responded:
Hello all new to boards. I,also, was prescribed nucynta this past Friday and feel horrible. The only thing it did wasgive me misery, confusion (as if Im not confused enough) clumsy, easyly angered, loss of voice, cold like symtoms in my chest and I dont have a cold, I could go on, but, you get the idea. I was taking percocet for past 3 years, but, recently stopped helping as much, so thats where this crap comes in. It just shows me how well the percocet was working at least making walking bearable (sorry for spelling, just so tired I but to much pain to sleep) now takes 45 min to 1 hour just to get out of bed. Sometimes I just think I m my Drs ginny pig lol. I m taking pain med for AS Anklosing Spondylitis, which is a form of arthritis. The weiredist side effect I v gotten was loss of voice, I thought it was allergies or cold coming on,. but the site states its a side effect. I dont know how they can release a medication that can cause so many side effects Well
 
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denz7 responded:
So sorry for your pain & problems. But I can't help but wonder if trying something new over the weekend is the best thing (not your fault at all). I think if my Doc ever tries a big change over the weekend I'll say OK but I'll start on Monday. What a nightmare you just went through. I had a second opinion last week and that Doc is also recommending I have the surgery. So I guess I'll be getting surgery soon, I want to wait until after Labor Day. I hope you start feeling better soon.
 
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delphitfg responded:
Hang in there...if just for your DD. It may be 100% better in a year, or it may be 200% worse. Go with the flow. Don't let stress make your pain worse, but don't let anyone tell you that your not (or should not) be in "that" much pain. We all have our own tolerance levels.

Be prepared for the negotiations for medication to begin with your Pain Management Doctor. You will make yourself suffer before you ask for medication, then he will make you wait another week or month or whatever he can get away with - that's his job. Be firm, you have a family to think of. If that means you are taking medication in order to clean the house...so be it! Sometimes the only alternative to a life without pain is no life. That is not an option for those of us who have responsibilities for a family. If you hit a wall with your Doctor, go to another Doctor, but do whatever it takes to keep your family in tact. Don't be afraid to ask for help, but don't live your life around the same stories either - it won't help you and others, even well meaning others get tired of the same story. If someone asks you how you're feeling, it's a courtesy, they really don't want to know!

Pain Sucks, unfortunately there is always someone else who is worse off then you! I just started with Nucynta, and I'm not impressed. Vicodan HP seems to help more, and Fentabs for breakthrough pain is the fastest acting, but doesn't really take the pain away. You have to find the combination that works for you. Don't turn into a victim. Be strong, stay as active as you can, and use the meds when you need them...G-d Bless!
 
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freedom1960 responded:
I just looked this drug up and it's nothing I would ever take! I read all 10 reviews and 8 of 10 were horror stories. I always look up any new drug before I take it, and usually before I even fill the script. WebMD usually has all the information you need on medications. (under "Drugs and Supplements" at the top of the page)

Of those 8 bad reviews, (the other two reviews were positive) most of the complaints were similar to what everyone else on this post said: dizziness, depression,etc. WOW!

One of the reviews said they were surprised it made it through the trials. And with these reported side effects I can understand why they would say that.

Rick
 
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annette030 responded:
I wouldn't bother with this drug either, because it is so close chemically to other drugs I have taken that did not work.

I really believe that most drugs are truly tested for side effects the first five years they are widely prescribed after being approved. That is why I won't even try anything until that time has passed. Many of use will take a drug for many years, and most "long term " studies for adverse effects only last a year. To be approved it seems like a drug only has to work better than a placebo and not kill anyone in the testing process.

That said, I don't bother to read the WebMD reviews on drugs. I want to see real double blind studies. The problem with reviews is that people who had a bad experience are much more likely to take the time to go and write about it than someone who had a good experience. You also cannot tell if they just happened to have the flu, migraines, or some other illness at the time they started the med and that was the problem rather than side effects of the drugs.

Just my thoughts.

Take care, Annette
 
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dayprogal responded:
Hi secretme, I feel so connected to your story. Although I have not had a fusion, I did have back surgery 2 years ago. I have been in pain for 3 1/2 years. I am still on the big meds like oxycontin daily, but trying to come off. Yet the pain is sometimes unbearable. I am about to try the nucynta myself. I have had good luck with tramadol after my c section so I am hoping it will be worth it. i too have a 4 year old DD and know how challenging it can be. You feel like a failure as a mom, as a wife, as a human being. I have really been doing alot of mental healing with a book by a Dr. John Sarno out of NY. His book is about healing back pain, but you have to be open to what he suggests. He believes alot of our pain is from TMS tension myosytis syndrome.. After trying numerous surgeons, doctors, PTs, and chiropractors I was willing and open to hear anything that might help and not have to use meds to do it (or surgery). Please look into this. Your daughter, just like mine, deserves to have her mommy back and you deserve to live your life to the fullest. That may mean we aren't able to do EVERYTHING we could before, but we can enjoy life again. Let's do this together! Good luck!
 
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Jaxlast responded:
Hi,

I am also new to Nucynta, after years of suffering with nasty migraine attacks. My father died last week and as always, when I have tremendous stress, the migraines got horrific. My Neuro had given me a trial prescription. I am puzzled by all of the negative posts here, or maybe I am just one of the lucky few this drug works for, but it was amazing. Within 30 minutes of taking it the first time, my vision cleared up, the pain eased up and I was able to help take care of my dad rather than being in a bed beside him. I've had to take it a few more times as we go through all of the post-death arrangements, and it allowed me to help my mom with minimal side effects to me. Do I think it will be the miracle I've been looking for in the long term? I hope so, but I have learned not to get my hopes up too much. I have noticed that it only works well on an empty stomach. Otherwise, the effects are delayed and not as noticeable. Percocet was tearing up my stomach. Nucynta has only caused some minor nausea, which I have during the headaches anyway.
 
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annette030 responded:
Did your doctor prescribe it to be taken only if you had a headache and needed it, or on a daily basis? I have seen other drugs in this same class of meds used to treat migraines, indeed I have used them for that myself. But always as a daily scheduled med. I would be interested in how your doctor is prescribing them.

I have only seen it prescribed on a daily basis, so people who are taking it that way, may have higher blood levels and thus have more likelihood of having side effects.

Once a medication is approved by the FDA and is available for general use, doctors are allowed to prescribe it any way they want to, and often find other uses, and ways of using it, than it was originally approved for.

Take care, Annette
 
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annette030 responded:
I am sorry, I had this new drug mixed up with another new drug that is dosed once a day, every day.

I Googled this drug on the site of the maker of the drug, and it says it is to be dosed every 4-6 hours as needed. I had read this before I posted last time in this thread. I should have remembered.

I like to see how well new drugs do over about five years. This is the period when side effects first come out.

I would be happy to hear how well it works out for you, especially in the long run. My best migraine remedy works about 85% of the time over many years of use.

Take care, Annette
 
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PJohns responded:
Like several others here, I'm puzzled as to why you would be taken off of a stable (and high) dose of Oxy and put on what is regarded as a milder analgesia. I can sympathize with wanting "off the strong stuff" --Oxy is highly addictive, it produces euphoria, and for many, causes debilitating side effects; all that said, you are no longer controlling your pain. It appears to me that you, and a few others on here who were switched off of other opioids, are experiencing withdrawal symptoms from your previous medication and assigning blame for these side effects on the newer agent. You have to decide what is important to you: maximum pain control regardless of the side effects and euphoric or "high" feeling, or a move down the analgesic scale with fewer of the side effects but less pain control. The theory behind the mechanism of Nucynta is that it mirrors the patho-physiology of pain in the body: it acts on both ascending and descending pain pathways, blocking pain signals as they return to the brain and modulating how you will experience the pain as the signal returns to the site of the trauma. This dual approach is used commonly in acute pain service in the peri-operative setting and, ideally, will produce the necessary analgesia while mitigating side effects. I can't speak to your experience with Nucynta, but again, after abruptly stopping Oxy and switching, it may be that you're experiencing withdrawal. Not uncommon. Good luck to you.


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