It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arachnoiditis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-08-2013, 10:11 AM   #1
Junior Member
(female)
 
Join Date: Dec 2012
Location: McDonough, GA, USA
Posts: 19
Tammy3234 HB User
Exclamation New meds to try... Anyone ever heard of this one???

HI! Hope everyone is well and enjoying your New Year! I am having surgery to fuse my neck. The areas are C4-5, C5-6 and C6-7. The pain is beyond tolerable at this point. I have received some relief with percocet, but not enough to warrant going up on the dose with the major nausea I have when I take it. I also have ulcerative colitis, so it makes it difficult to take certain meds. They have decided to try Nucynta. a new opiate based drug. They said it doesnt have the same side effects as the opiate based, nor does it have the "high" thats associated with those other meds. I am very unfamiliar with this medication and dont know how long its been on the market. I just want to see if anyone has ever taken this medication, how it worked and what were the side effects? Reading the info that came with the medication basically describes all of the side effects from opiates. One of my biggest reasons for trying to find another medication aside from the side effects of the opiate based drugs is that I dont want to become addicted to pills...
Please let me know if you or anyone you know have taken this and what thier experience was!
Thanks in advance for your help!

Tammy

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-08-2013, 05:40 PM   #2
Senior Veteran
(female)
 
BB07's Avatar
 
Join Date: Feb 2010
Location: Lower Alabama
Posts: 1,009
BB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB User
Re: New meds to try... Anyone ever heard of this one???

eamm

no i do not believe you will get relief fromthe nucynta-ou nees to be stabalized a short acting narxotic that wokks fast oxy or hdro
__________________
constant companion pain

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-08-2013, 09:17 PM   #3
Senior Veteran
(female)
 
Join Date: Mar 2012
Location: Washington
Posts: 850
tortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB User
Re: New meds to try... Anyone ever heard of this one???

Yes I have tried this one. For me, it actually did cause the side effects that I don't get with opiates! It made me quite dizzy, and a bit loopy and nauseous. And this was at supposedly a fraction of the dose a conversion chart recommended. I can take other pain meds at much higher doses without feeling impaired.

Pain meds like many treatments can be hit or miss. I'd give it a try and see how it goes. Nucynta has been out a couple years, but due to the high cost (brand only) and such, its not prescribed quite as much. Double check your insurance will even cover it, and if so, at what cost.

Studies show that when opiates are taken for legitimate chronic pain, the risk of addiction is quite low. Do you have some type of addiction history? Otherwise, that would not be something of great concern, only something to be aware of. Also, it doesn't have to be an opiate like oxycodone or morphine to develop an addiction...some folks have even become addicted to Tramadol.

Anecdotal evidence at least seems to show that meds like Nucynta and Opana which are supposed to avoid the "high" seem to work for less folks, or work to a lesser degree. I have also found that true. Everyone is different though. Some folks report meds like this work for them while the other true opiates don't.

I assume they are trying you first on the IR (immediate release) version. Was there talk of adding the ER (extended release) version if its helpful? If for some reason they give you higher than a 50mg dose to start (the lowest...they make 50, 75, and 100mg IR tablets), I'd ask for a lower one or ask if you can cut it in half.

I was taking 60mg oxycodone for breakthrough pain (for which the conversion chart suggested 300mg Nucynta as its estimated as 5:1). So, they tried me on the 100mg IR. It made me feel ill for a few hours...couldn't get up off the couch lol. Even the 50mg did that somewhat. So glad we didn't try 200 or 300mg.

Better to start low and add if needed--this is true with any med. I also only try new meds at home and on a weekend. In case anyone is curious, we put it on the back burner for me (might try the ER version some other time in hopes the dizziness and such would be diminished with the slower release).

The actual prescribing info (available in pdf online) will show you what percent of folks got what side effect in the study for FDA approval, compared to placebo. Most common are nausea at 30% and dizziness at 24%, although its not as bad as it sounds as in the placebo group, 13% got nausea and 8% had dizziness.

I find that info way more helpful than the very long list of all the possible side effects in the pharmacy printouts (I don't want to be dwelling on the < 1% stuff). Best wishes.
__________________
Kate
constant headache since 2006

 
Reply With Quote
Old 01-08-2013, 10:17 PM   #4
Senior Member
(male)
 
Join Date: May 2011
Location: Mount Holly, NJ USA
Posts: 118
deanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB User
Re: New meds to try... Anyone ever heard of this one???

Quote:
Originally Posted by Tammy3234 View Post
HI! Hope everyone is well and enjoying your New Year! I am having surgery to fuse my neck. The areas are C4-5, C5-6 and C6-7. The pain is beyond tolerable at this point. I have received some relief with percocet, but not enough to warrant going up on the dose with the major nausea I have when I take it. I also have ulcerative colitis, so it makes it difficult to take certain meds. They have decided to try Nucynta. a new opiate based drug. They said it doesnt have the same side effects as the opiate based, nor does it have the "high" thats associated with those other meds. I am very unfamiliar with this medication and dont know how long its been on the market. I just want to see if anyone has ever taken this medication, how it worked and what were the side effects? Reading the info that came with the medication basically describes all of the side effects from opiates. One of my biggest reasons for trying to find another medication aside from the side effects of the opiate based drugs is that I dont want to become addicted to pills...
Please let me know if you or anyone you know have taken this and what thier experience was!
Thanks in advance for your help!

Tammy
I have been taking nucynta ER 200 for 2 months. It has been the most effective of all pain meds. But as stated, meds affect each of us different. No constipation is another great benefit of nucynta. I am having my scs replaced next week and opana and fentanyl did not do the job as well. Any other questions?

 
Reply With Quote
The following user gives a hug of support to deanh:
gmak (01-09-2013)
Old 01-09-2013, 01:19 PM   #5
Junior Member
(female)
 
Join Date: Dec 2012
Location: McDonough, GA, USA
Posts: 19
Tammy3234 HB User
Re: New meds to try... Anyone ever heard of this one???

I took it for the first time this am and Im ALLERGIC to it!!! Such is my luck... I swent to the surgeon this morning and they are repeating the MRI and then we will discuss whether or not I will have to do a disk replacement, a spinal fusion or both. They need to see how bad C-5 and C-7 are at this point and the last MRI was done 3 months ago and the clarity wasnt very good so we are going to do contrast this time. Does anyone know the sucess rate of the two different procedures, or have any suggestions on which to go with? What is the recovery and down time like? Will I be completely disabled after the surgery? Will the surgery actually help with the pain and allow me to function at the same level as I did before? I also have degenrative disk disease and osteo-arthritis, so Im concerned about the effect the surgery will have on the spine itself and if it will hold. What is a good medication to ask for or a combination that may work? I DONT want to be on narcotics for the rest of my life! I dont get a whole lot of relief with them anyway and as of right now they have tried Norco 5/325, Norco 7.5/352 (2 every 4 to 6 hours) and percocet 5 and 7.5. Nothing at this time has seemed to make any real difference at all with the pain. Im so frustrated, scared and tired of hurting! I want my life back! And suggestions or feedback is greatly appreciated!
I have done chiropractic care and PT for 4 months just to try and heal it naturally before going through pain management and surgery. Unfortunately, it hasnt helped. The pain and numbness continue to get worse as does the inability to use my right hand and arm... I am also right handed which makes it even more difficult!

Thanks again for the support and suggestions!

 
Reply With Quote
Old 01-09-2013, 08:46 PM   #6
Senior Member
(male)
 
Join Date: May 2011
Location: Mount Holly, NJ USA
Posts: 118
deanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB Userdeanh HB User
Re: New meds to try... Anyone ever heard of this one???

Sorry it did not work for you. I have gone to 5 different specialists in the past 6.5 years. I believe in 2nd opinions. It does not hurt. Also the is a lot of good suggestions on the web. I did not use a chiropractor as I did not want it worse. Water therapy or walking in water at the Y helped most before Ihad failed back syndrome.

 
Reply With Quote
Old 01-09-2013, 09:37 PM   #7
Facilitator
(female)
 
Join Date: Oct 2012
Location: USA
Posts: 2,594
gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
Re: New meds to try... Anyone ever heard of this one???

Dear Tammy, I have had four lumbar surgeries & im in remission from chronic ulcerative colitis. I took Stadol nose spray when I had ulcerative colitis because of absorbtion problems with oral meds. I was changed to fentanyl patch when it became evident that a long acting pain medicine was required. Also, at one period of time when I had uc & horrid back pain I took oxy IR with phenergan for nausea. Any back surgery is very serious decision in my opinion and I would get 2 opinions, at least, from a neurosurgeon or orthopedic surgeon who limit their practice to spine only especially if I wasnt sure what was/is my pain generator(ie bulging discs, arthrits, stenosis, ddd). I hope that you can get your pain controlled & the nausea relieved and then can assess what would be best surgical or medical mgmt with the best dr that you trust.

Last edited by gmak; 01-09-2013 at 09:51 PM. Reason: typos

 
Reply With Quote
Old 01-10-2013, 01:06 PM   #8
Junior Member
(female)
 
Join Date: Dec 2012
Location: McDonough, GA, USA
Posts: 19
Tammy3234 HB User
Re: New meds to try... Anyone ever heard of this one???

Thanks for the answers! The surgeon said that there really arent any other options left... I do have ddd and osteo arthritis, which makes the case more complicated... But with 3 bukdging disks, theres really not much more they can do. He is a surgeon who is ortho trained with a specialty in spinal surgery. He is one of the best in my area. I have also sought out opinions from other doctors. I am really nervous about the surgery, but I cant stand the pain. I have less and less use of my hand each day and I dont sleep at night because the pain wakes me continuously. The frustration is unreal and I just want to be better. I dont want to be like this forever. He has told me that the surgery will not make thing 100% but it will help to eliminate some of the pain. My next course of action will be to find ways to deal with the pain that will not include large doses of pain medication, as I have seen what that kind of addiction can do to people. Its a very big fear for me. I will continue with chiropractic care, although it will be limited because of the surgery and will use PT for as long as necessary. I am also going to see a wholelistic medicine doctor to see what natural remedies are out there... Any suggestions on how to deal with this pain and mobility issue are greatly appreciated. as I said taking all of the pain medicine makes me nervous and I cant function without it!

 
Reply With Quote
Old 01-10-2013, 02:59 PM   #9
Facilitator
(female)
 
Join Date: Oct 2012
Location: USA
Posts: 2,594
gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
Re: New meds to try... Anyone ever heard of this one???

Dear tammy, I live with all the above(ddd, facet arthritis, bulging discs) because i have a condition called arachnoiditis which is basically scar tissue everywhere in spine & any invasive procedure can worsen the pain & nerve symptoms. If I could relief the pain even a little with surgery I would have the disks fixed & spondy or retrolithesis. I cant remember which i have but 3 neurosurgeons wont operate. So i take a long acting narcotic & take breakthrough narcotics along with muscle relaxers, lyrica, baclofen. Medical mgmt with medicine, TENS, hot soaking baths, very light stretching exercises, heat, ice help me function as best i can. I definitely have to have opioids or I wouldnt even have a life at all! The pain is incompatible with being alive but because of the meds & modalities i can relieve the pain 50% & this lends me a life worth living. So, it took years for me & my dr to find the things that work for me & i think that you will
too! Hang in there, hope you will find the answer soon to help you
function again. I dont know what you have seen concerning addiction or addicts, as stated in your post above, but i wanted to say in my opinion there are many people that have severe non cancer chronic pain that at the end of all the surgeries, injections, PT they require narcotic pain medicine to stop the suffering & they are no different than anyone else. I only go to the bottle of pain medicine when i have pain, just like you do. I think acute & chronic pain sufferers both do this just to make the pain stop, no addiction or drug seeking behavior, no "high" involved, nothing illegal, we just hurt & my narcotic medicine is necessary, as necessary to me as as a cane or a walker to others its just to function and live my life. I have to endure judgement from people that want to label me & im a normal person that is just trying to live, be a good citizen, obey the law, be a good mom & wife, & im no different in my heart than any other normal kind loving
person. I hope your dr wasnt eluding to your being a chronic pain patient & you will do so well that you never need narcotic pain medicine or treatment. All the best to you.

Last edited by gmak; 01-10-2013 at 05:36 PM. Reason: more info

 
Reply With Quote
Old 01-10-2013, 03:03 PM   #10
Junior Member
(female)
 
Join Date: Dec 2012
Location: ohio
Posts: 11
mylife39 HB User
Re: New meds to try... Anyone ever heard of this one???

someone on here named DV8ER HAS USED THIS MED read his post he is taken it off his list. may help you understand this med

 
Reply With Quote
Old 01-13-2013, 12:09 PM   #11
Junior Member
(female)
 
Join Date: Dec 2012
Location: McDonough, GA, USA
Posts: 19
Tammy3234 HB User
Re: New meds to try... Anyone ever heard of this one???

I dont know how to search for anyone and really dont know how to use the site very well... Im new and still learning! Thanks! Any tips on ways to better understand how to get the most out of this site would be greatly appreciated!

 
Reply With Quote
Old 01-13-2013, 12:16 PM   #12
Junior Member
(female)
 
Join Date: Dec 2012
Location: McDonough, GA, USA
Posts: 19
Tammy3234 HB User
Re: New meds to try... Anyone ever heard of this one???

Thanks so much! I appreciate your response. They have tokd me to go ahead and apply for disability which I have recently done. They say the pain will never go away and that it can be debilitaing.
I have friends who started out taking narcotics for an injury or whatever and just needed more and more and when the injury was better they still wanted the high... Several of them have destroyed their loves or ended up in prison...
I dont get high when I take the meds, I just get a little relief... Even with the medication, it doesnt go away and sometimes I am still not able to function the way I need to. Therefore I am praying the surgery helps. I just dont want to end up like some of the people I have seen and with the news making it sound as though people who take pain medication are addicts, I am afraid of being labeled as such. I know that over time you do build up a tolerance for the medication and it takes more to help with the pain. I guess my fear is that it will overtake me. I dont want to hurt and I find myself taking the medication almost daily now because I cant stand hurting... It just makes me afraid that I will become dependent upon the meds and it may make me like them...
Thanks!

 
Reply With Quote
Old 01-13-2013, 01:10 PM   #13
Facilitator
(female)
 
Join Date: Oct 2012
Location: USA
Posts: 2,594
gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
Re: New meds to try... Anyone ever heard of this one???

Dear tammy, Yes, i am physically dependent, not addicted. As i understand it it works like this: i will never be high as long as i only take the narcotic pain medicine when im hurting (and i do that)& an addict uses addiction behavior, which i have never exhibited. Yes, i would go thru withdrawal without the meds im on but everyone as in drs see my MRI, my diagnosis and know Im in horrid pain & that it must be controlled. That is why its most important that i follow my drs instruction in all that i do; b/c of tolerance, the fact that i am judged thru the very same "glasses" that you describe from the news reports, I cannot & never have gotten my meds early, use my dr only, subscribe to my pain contract precisely using one pharmacy, one dr, taking my medicine exactly as prescribed by my dr, never have or will use illicit drugs, have no history of drug abuse, dont associate with people that do( the drs ask me on a form called a SOAPP), tell the emphatic
truth all the time, make sure my character & behavior is above board all the time so that i can live b/c the pain dictates my life if i dont take the narcotics the pain is incompatible with being alive! I did not choose this in anyway to take narcotics, this tragedy happened to me! I will pray for you that the surgery works & you never have to live as a chronic non cancer moderate to severe pain person! Btw, does your MRI say anything about " clumped nerves" ?

 
Reply With Quote
Old 01-13-2013, 02:17 PM   #14
Senior Veteran
(female)
 
BB07's Avatar
 
Join Date: Feb 2010
Location: Lower Alabama
Posts: 1,009
BB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB User
Re: New meds to try... Anyone ever heard of this one???

Dear Tammy-

One thing you said really caught my eye-you said one or the surgeon you are considering letting do back surgery-when he told you that the surgery should eliminate alot/some of the pain-there is no way he can guarrantee that, in fact when I went for 3 opinins-2 of the surgeons told me they could not guarrantee that the surgery would alleviate ANY pain or perhaps leave me with more pain, and I thought then as I do now-I could not get used to a "new" or worse level of pain-i just dont think so-this is way more than enough that It took so very long to get to what finally helped me the most effectively. I sure am not out to scare you I just want you to be aware of anything and everything before you have back surgery-best wishes
__________________
constant companion pain

 
Reply With Quote
Old 01-13-2013, 08:28 PM   #15
Junior Member
(female)
 
Join Date: Dec 2012
Location: McDonough, GA, USA
Posts: 19
Tammy3234 HB User
Re: New meds to try... Anyone ever heard of this one???

Hey seems to think that it will help, although as you said, there is no guarantee. I know that I can barely stand myself rightn ow becauseI am so miserable... and yet VERY afraid of the pain meds. I just want to be my normal self again. I am terrified of it getting worse, or having no improvement at all... I am just praying that I can find an answer that will give me some quality of life back!
And no nerve clumping that I am aware of, however, we are repeating the MRI with contrats so that we can get more answers as the surgeon is very aware of my desire to avoid surgery if possible...

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 12:08 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!