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21 - 40 of 103 Comments Last updated Jul 1, 2013

Since: Apr 08

New York, NY

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#22
Sep 10, 2008
 
Jacob wrote:
I was taking 15 800mcg actiq suckers a day for 4 years for severe back & knee pain prescribed from my pain mngmnt doctor. Thanks to my family doctor I have been off them for almost 2 years now. What everyone taking actiq needs to know that is taking them is that you are addicted to them. I went through 4 rehabs and it was absolute hell getting off of them. I kept telling everyone that I could not deal with the pain but the truth was I could not deal with not having my actiq. It's all a big game. The people who make actiq want all of you addicted. All they see are $$$$$$$$$. They could care less about you. There is no pain bad enough to put yourself through what I had to do to get off actiq. Trust me when I tell you, It is the worst thing you will ever go through. I almost lost my wife, family & job over it. If you are on it, get off it now, if you are thinking about taking it, Don't. I know when you are in pain constantly you will try anything to make it stop, but trust me the trade off is not worth it. The thousnds of dollars of dental bills are not good either because actiq rots your teeth quickly. One more note, I had a brain scan done a while back and they were showing me the pictures and while most of my brain pics were colorful and normal there was a med size spot that was very dark. They told me that it was the part of the brain that the actiq destroyed. They said they see the same thing in heroin addicts brain scans.
Jacob, I am very curious in learning more about your story - why you were on such high doses and how you functioned as well as what you take now for the pain. I have heard about everyone on the pain and do feel it necessary in certain cases but never hear of side effects. Thx
House of Pain

San Jose, CA

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#23
Nov 26, 2008
 

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I suffer from: Two bulging dics in my c-spine, often leading to the loss of use of my left arm, 3 DDD in my lumbar spine, often resulting in random falls and incapcitation, and the worst: Pudendal Nerve Entrapment.(Google that to see what a miserable condition it is)

Until my new pain management Doctor prescribed me Actiq recently, there were days where I wanted to simply curl up in a ball and die, because the pain was so bad.

I couldn't even have sex with my loving wife of 14 years, because, with Pudendal Nerve Entrapment, orgasim felt like some firing a Nail Gun through my perinieum. I get 10 300mcg Actiq's every 2 months, so I must pick my "Pain Battles" appropriately.

Also, I use Opana ER and Immediate Release. My life has changed dramatically with these two medications, and I am as close to living normally as possible.

It's a proven fact, that if you have an "Addictive Personality" you can/will become addicted to Pain Meds. For me, these medicines restored my dignity, function, and purpose to my life, in that I can work, volunteer, and contribute to society.(I was forced to retire from my public safety job after 22 years due ot the trauma form an on the job injury)

I wish those who are struggling well. But each case if different, each person unique, and every circumstance individual. Painting Actiq as bad, with a broad brush, is basically "Narrow Minded" and a detriment to those, like myself, who have seen their life change for the better.
steve987

North Bergen, NJ

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#24
Dec 3, 2008
 

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I'm amzed at some of the things I read on here. Whether it comes from a person in pain, not in pain, despises people who take narcotics for their pain etc. The bottom line is this. Each person is an individual, and nobody has the right to judge except GOD. For those in severe chronic pain, I can relate, as I have severe lower back and leg pain since a football incident in 1990, followed by failed back surgery in 1992. Pain medication is a necessary evil sometimes. If a person can't lead a normal, productive life because of their pain, then they need pain medicine. I believe in natural health and that people should exhaust ALL options including acupuncture, physical therapy etc. before turning to narcotic drugs. They should always be a last resort. The biggest problem is the treating physician and not the patient. If closely monitored/drug tested etc. the person's pain should be conteolled with a modrate amount of medication. taking 50 percocets in one day is something that should never be needed. The percocet is obviously not working as is not the drug for you. As far as Actiq is concerned, this is the strongest drug available. Once again, it should be a last resort after all other treatments and drugs have been exhausted. The dosages should not be very high no matter what the pain is. I use it and my pain which I've had for over 20 years is reduced by it. This doesn't mean that if the pain gets a bit worse I'm goint to take 10 more; NO! Sometimes you have to be realistic with your expectations about how well the medicine will work. I still have pain, but it's not excruciating when I take my medicine. I don't expect to be pain free and high. People who take very high amounts have false expectations, which is the physician's fault. Patients should be told that their pain will be controlled, but not taken away. So be realistic, have self control, and learn to live with some pain. The alternative is walking around like a zombie, potential overdose and death. I'm an educated man with a Ph.D in Biochemistry. I'm a realist. If you take medication for a medical condition, no matter what it is, then more than likely you need it. The amount, the type of medication etc. of course will vary. But being an addict is not uncommon. There are people who are addicted to caffeine, cigarettes etc. But, for some reason society looks at people who take pain medication as drug addicts and junkies. This might be the case for some, but not for all. Please, those of you who are quick to judge people, don't, unless you have walked in their shoes. Those of you who are abusing pain meds know who you are. Try and do the right thing for the people that love and care about you. Get help, and you can get relief for your pain without abusing pain medicine. For the people out there who don't require pain medicine, you are fortunate. You never know when life will throw you a curveball and then all of a sudden you have become one of those people who will be judged by others.
my wife gets it

Warminster, PA

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#25
Jan 27, 2009
 
pain24-7 wrote:
I have been on Actiq for 3 years, fetanyl patch and percocet because I have 3 herniated discs and radiculopathy down both of my legs. We just had to switch insurance companies and I was told it would not be covered. I have had one surgery but I refuse to have a three level fusion which I was told by the top neuro surgeon at Jefferson University that if I had that surgery, my back wouldn't be able to handle it and I would wind up in a wheel chair. I work everyday and function just fine when I have my medication. I am afraid that once I run out, I will not be able to work because my medication is the only thing that gets me through the day. I was told by my insurance company that they would pay for dilaudid. Does anyone know if dilaudid is good for pain? Please any suggestions.
Yes, it is of great help when my wife's migraines get so bad she has to go to the hospital. It's the only thing that helps but she usually requires several doses in a hospital setting.
sherman

China Grove, NC

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#26
Jan 28, 2009
 
Renea wrote:
Actiq can be used for other conditions other than cancer! Cancer is NOT the only chronic pain condition that people need meds to help them function day to day with their jobs and their families...their are those with MS, Lupus, Parkinsins, AIDS, Fibromyalgia, Chronic Migraines, Chrons Disease...and the list goes on and on.
So, with this said, if my doctor chooses to treat me with Actiq for my particular chronic pain condition then it is up to me to use this med responsibly. Just because people are abusing actiq does not mean it should be limited to only people with cancer...trust me, if someone wants to abuse actiq they will get it one way or another and we All know this to be true. So, let's please back off and allow the doc's to treat us how they feel appropriate, it is because of people like you riding their backs that people in this world are not//receiving adequate pain
control and are either taking street drugs b/c docs are afraid to write the scripts or they are
blowing their brains out b/c the pain is intolerable.
amen rena i am a rn and i have chronic back pain dt sevral herniations severe ddd and spinal arthritis, i have had 2 surgeries one fusion and one partial lamenectomy which did nothing except keep me out of wrk, i am currently on the fentanyl patch at 150mcg every 48 hrs and have been at this dose for 6 years I WOULD BE DEAD WITHOUT IT.
Lolaretz

Costa Mesa, CA

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#27
Feb 17, 2009
 

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I am so sorry to hear about your mother. My family is struggling with my mother's addiction to to suckers right now. She has agreed to go into treatment, but has been in limbo between agreeing to go and denying addiction. My mother has been taking them for over 2 years, and has become a completely different person. Nodding off in conversations, refusing to leave the house, can't cope without them, different pharmacies, all the tell-tell signs. I just want my mom back, and for MDs to be better connected to addiction symptoms. Maybe they should conduct regular interviews of family members, something! In my family's view, this drug is horrible.
NativH

United States

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#28
Mar 6, 2009
 

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I have a neck injury that started with one auto accident(1995) and was severely expanded by a second accident (2005). My neurologist, along with several others in the Texas Medical Center, have all confirmed that there is no surgury for my problem and that my only course is to manage the pain with med's. I started on hydrocodone after the first accident and that kept me OK until the second serious accident (neither my fault by the way). I've now gone through oxycontin (couldn't stomach it), MS Contin (didn't work at all since even intravenous morphine has ZERO effect on me), Duralgesic patches (what a PITA those are to use), methodone (disgusting sweating like a pig even in 50 degree weather) and I am now on Opana ER and Actiq. Actually methodone worked fine except I would just desolve in a sweating mass of flesh in an air conditioned office/conference room right in from of our CEO, CLO and CFO. Now how professional is that?

I am concerned about dental problems for sure and that could cost me a bundle if it becomes a problem. But my wife has a functioning husband, I can earn $140K+ annually vs. being a veg at home, and I consider my neurologist/pain management doctor an angel. Say what you will, walk a mile with my neck and then come throw stones at me. Until then, you just ain't got a clue.
inpain2

Schertz, TX

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#29
Apr 2, 2009
 

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pain24-7 wrote:
I have been on Actiq for 3 years, fetanyl patch and percocet because I have 3 herniated discs and radiculopathy down both of my legs. We just had to switch insurance companies and I was told it would not be covered. I have had one surgery but I refuse to have a three level fusion which I was told by the top neuro surgeon at Jefferson University that if I had that surgery, my back wouldn't be able to handle it and I would wind up in a wheel chair. I work everyday and function just fine when I have my medication. I am afraid that once I run out, I will not be able to work because my medication is the only thing that gets me through the day. I was told by my insurance company that they would pay for dilaudid. Does anyone know if dilaudid is good for pain? Please any suggestions.
Yes Dilaudid is a very good pain medication, especially for acute breakthru pain.
tired of pain

Brooklyn, NY

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#30
Apr 22, 2009
 

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Robert H Hilley IV wrote:
You are incorrect in your assumption that we are trying to limit the way doctors prescribe a medication. The doctors are allowed to prescribe "off-label" ... the manufacturers are not allowed to promote the drug "off-label" ... herin lies the problem. The FDA approved the drug, which is 80 times more potent then morphine to treat cancer patients ONLY ... a drug that powerful should not be promoted by its manufacturer to treat headaches and backpain.
Wall Street Journal Article: http://online.wsj.com/article/SB1164078800598...
Actiq Attorneys: http://www.schmidtandclark.com/Actiq
NO DISRESPECT "ROBERT" , HOWEVER, I HAVE LIVED WITH SEVERE, LIFE DIBILITATING PAIN FOR 22 YEARS, HAD MULTIPLE UNSUCESSFUL SURGERIES, BEEN ON SEVERAL DIFFERENT NARCOTIC AND NON NARCOTIC BASED THERAPY FOR PAIN RELIEF, INCLUDING ACUPUNCTURE, HANDS ON HEALING, PRAYER CHAINS, ETC. MY LIFE WASN'T WORTH THE AIR I WAS BREATHING, I HAD MULTIPLE DIAGNOSIS, DEGENERATIVE DISC, FYBROMYALGIA, RHUMETOID ARTHRITIS, ETC. I BEGGED MY HUSBAND TO HELP ME END MY LIFE AT THE AGE OF 25 WHEN I COULD NO LONGER STAND THE PAIN OR BEING A HUMAN PIN-CUSHION GUNNIE-PIG...THE LAST THING I DID WAS SEE A PAIN DR. WHO PRESCRIBED ACTIQ AS WELL AS FENTANYAL PATCHES TO TREAT MY MIND SPLITTING PAIN- FOR THE FIRST TIME I WAS ABLE TO LIVE LIKE I SEMI-NORMAL PERSON, I COULD BE AVAILABLE TO MY KIDS, I DESPISE PEOPLE WHO HAVE THE UNBELIEVEABLE NERVE TO JUDGE SOMEONE'S PATH TO RELIEF, AND PEOPLE WHO "CRYOUT IN ALARM" ABOUT THE ADDICTION PROBLEM DO NOT REALIZE THAT ADDICTS WILL SEEK ANY FORM OF MIND ESCAPE AVAILABLE- THAT INCLUDES DRINKING HAIRSPRAY, I AM AN ADDICTIONS SPECIALIST AND WELL AWARE OF THE DANGERS, ANY MEDICATION WHEN TAKEN AS PRESCRIBED TO TREAT A DIAGNOSED CONDITION IS NOT AN ADDICT, THERE IS A HUGE DIFFERENCE BETWEEN BEING CHEMICALLY ADDICTED TO A SUBSTANCE THROUGH USE OVER TIME, AND BEING PHYSICALLY ADDICTED MIND BODY AND SPIRIT WHEREBY EVEN IN THE ABSENSE OF A CONDITON THE PERSON CONTINUES TO USE TO ESCAPE MENATL DISTRESS ETC. MANY OF THE "ALARMESTS" ARE MAKING IT UNBEARABLY DIFFICULT FOR LIGITIMATE PATIENTS TO RECEIVE ADEQUATE PAIN RELIEF NOW BECAUSE ALL OF OUR DR.S ARE TERRIFIED TO BE BROUGHT UP ON CHARGES BY THE DEA, OR FBI, ETC. ITS TERRIBLE AND I WONDER,--COULD YOU SIT THERE AND WATCH YOUR CHILD, YOUR WIFE, YOUR MOTHER, YOUR LOVER, CRY AND SCREAM WITH PAIN HOURLY, FOR MONTHS ON END, BEGGING TO DIE BECAUSE NO ONE COULD PRESCRIBE RELIEFE THAT WAS PHYSICALLY AVAILABLE BECAUSE SOME "WELL -INTENTIONED-DO-GOODER" MADE PRESCRIBING THAT MEDICATION ILLEGAL FOR THEIR PARTICULAR ILLNESS? HOW DO YOU LIVE WITH YOURSELF? WE EUTHANIZE ANIMALS IN PAIN FOR GOD'S SAKE, SHOULDN'T WE AT LEAST OFFER HUMANS PAIN RELIEF? AND IF YOU ARE THAT CONCERNED WITH ADDICTION, HER'S A FLASH- ALCOHOL KILLS MORE PEOPLE DIRECTLY AND INDIRECTLY EVERY YEAR THAN PAIN MEDICATION EVER COULD...AND WHAT IS THE "MEDICINAL" PURPOSE OF ALCOHOL AGAIN?
tired of pain

Brooklyn, NY

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#31
Apr 22, 2009
 

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Actiq and insurance wrote:
I have taken Actiq for 3yrs and I just received a notice from my insurance saying that they will no longer cover it. They won't cover it unless I have Cancer. So, now I am in pain losing days with my family. I don't understand how someone can determine what kind of pain will be treated and what won't.
I've been on this med for about 8 years, all of a sudden my ins. co. pulled the same garbage on me,(and mind you I pay $2,000 a month for insurance- i realize it pales in comparison to the drug cost but it's alot nonetheless...) I had a total of 18surgical procedures in my life and this was one of the only things that helped, i was lucky enough to be able to SWITCH INSURANCE COMPANIES to one who covered it irregardless of diagnosis. I can't imagine what i would have done if that was not an option, other than seeking means to suicide as I had done aprox. 22 yrs ago when I could not find relief.
Mark

Saratoga Springs, NY

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#32
May 3, 2009
 

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I don't know what to say after reading all the post. I will agree with everyone though I have had 4 surgeries due to breaking my neck in a motorcycle accident Actiq is a druf that does let me function as best as possible.
Is it addicting? what pain medication isn't?
I feel bad that someones mother commited suicide while using Actiq do we forget how many alcholics, herroins addicts, crack, addicts commited suicide I am very eager to know the percentage vs Actiq users.
Teust me I have to listen to every family member worry and I gave up trying to please them. So lay off Actiq users it will only be a little while before you start complaining about another drug.
k-mersman

New Bern, NC

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#33
Jul 4, 2009
 

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i feekl as though im reading a book about my life when i read your post. i got A LETTER MID-JUNE SAYING THEY WILL NO LONGER COVER MY ACTIQ EVEN IN GENERIC FORM IF I DO NOT CURRENTLY HAVE CANCER. I HAVE BEEN ON THIS MED FOR WELL OVER 5 YEARS AND IT HAS BEEN A LIFE SAVER! nOW I CSN NOT GET IT. I HAVE BCBS AND THEY REFUSE TO PAY FOR IT AFTER JULY 1ST,2009 FOR NON-CANCER PATIENTS-IF U DONT MIND ME ASKING, WHAT INS. COMPANY WERRE U ABLE TO SWITCH TO SO IT WOULD B COVERED. I AM OUT OF TIME.
THANK U
k-mersman

New Bern, NC

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#34
Jul 4, 2009
 
my last post was to: tired of pain in NJ-just so u know! hopefully u can get me some info on switching insurance a.s.a.p.
SUFFERING IN PAIN

New Bern, NC

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#35
Jul 5, 2009
 
PLEASE LET ME KNOW WHAT INS. COMPANIES WILL COVER ACTIQ(I USE GENERIC) MY BC&BS OF N.C. WILL NO LONGER COVER IT AS OF JULY 1ST,2009. I AM DUE FOR MY REFILL BUT CANNOT AFFORD THOUSANDS OF DOLLARS A MONTH FOR THEM SO I NEED TO FIND AN INS. THAT WILL PAY-PLEASE IF ANYONE CAN HELP A.S.A.P I WILL BE SO THANKFUL
tired of pain wrote:
<quoted text> I've been on this med for about 8 years, all of a sudden my ins. co. pulled the same garbage on me,(and mind you I pay $2,000 a month for insurance- i realize it pales in comparison to the drug cost but it's alot nonetheless...) I had a total of 18surgical procedures in my life and this was one of the only things that helped, i was lucky enough to be able to SWITCH INSURANCE COMPANIES to one who covered it irregardless of diagnosis. I can't imagine what i would have done if that was not an option, other than seeking means to suicide as I had done aprox. 22 yrs ago when I could not find relief.
SUFFERING IN PAIN

New Bern, NC

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#36
Jul 5, 2009
 
please if anyone can tell me what ins. will pay for actiq(generic) i just found out as of july 1st, 2009 that bc&bs of n.c. will no longer pay for my rx. im due for my refill but since its after the 1st i cant get it-i can not afford $9000.00 a month for my rx. i need ins that will cover. please anyone with info-let me know a.s.a.p. thank u so much -i appreciate it
SUFFERING IN PAIN

New Bern, NC

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#37
Jul 7, 2009
 

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PLEASE I NEED HELP A.S.A.P.- AS OF JULY 1ST BC&BS WILL NO LONGER PAY FOR MY ACTIQ-I AM NOW DUE FOR MY REFILL AND CANNOT GET THEM-PLEASE TELL ME WHAT INSURANCE COMPANYS WILL PAY NO MATTER YOUR DIAGNOSIS. IF U DON'T HAVE CANCER- BC&BS WILL NO LONGER PAY. I WILL HAVE NO QUALITY OF LIFE BECAUSE OF THIS-HELP PLEASE ANYONE THAT HAS ANY INFORMATION ON INS. COMPANIES THAT COVER FOR NON-CANCER PATIENTS. THANK YOU FOR ALL YOUR HELP
tired of pain wrote:
<quoted text> I've been on this med for about 8 years, all of a sudden my ins. co. pulled the same garbage on me,(and mind you I pay $2,000 a month for insurance- i realize it pales in comparison to the drug cost but it's alot nonetheless...) I had a total of 18surgical procedures in my life and this was one of the only things that helped, i was lucky enough to be able to SWITCH INSURANCE COMPANIES to one who covered it irregardless of diagnosis. I can't imagine what i would have done if that was not an option, other than seeking means to suicide as I had done aprox. 22 yrs ago when I could not find relief.
BillyBob

United States

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#38
Jul 11, 2009
 

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Wow, reading all the comments really hit home. I was taking 180 600mcg actiqs per month for a year and a half along with 200mcg duragesic changed every 2 days. I got injured at work so workers comp pays 100%, but it wasn't always that way. Workers comp tried to not pay for it. They had one of their doctors do a phone interview with my pain doctor. When my doctor was done with him he had no choice but to report to workers comp that the actiq was necessary and they had to keep paying.
Now am I addicted to actiq, I don't think so. But am I dependent on it, absolutely. Both physically and mentally. If someone told me that today was my last day to have actiq , relief , I would probably have a nervous breakdown. Just knowng that I would be going backwards would push me over the edge. I have a semblence of a life again. Able to function, somewhat. But worse would be the pain of the w/d efffects from my body being on actiq for so long. My body depends on actiq to quell the pain. So yes I am dependent, but notab addict.
WhaTisPainFree

Greenwich, CT

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#39
Jul 14, 2009
 

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Taking 15 FIFTEEN POPS of Actiq A day FIFTEEN TWELVE THOUSAND micrograms a day and are here telling pain paitents what? Hey Dude, be carefull if you're a junkie like me you may have withdrawl pain when you try to get off of it... Ya Dunce! When did you have time to do anything else the recommended absorption time is 30-45 minutes??? Therefore you were taking Actiq every waking moment of your life. My friend: the pain you were suffering was withdrawl from your obvious addiction which began occuring every two hours at the rate you were abusing them. I take three a day and have for three years, using, not abusing the intended/recommended (actually less that the recommended) dosage for Break Through Pain. I DO NOT, exceed my dosage, I DO NOT abuse any of my medications and for the first time in ten years I can live my life again. I do not have an addictive personality and the three or four times I was told Actiq was on backorder, like now, today, this week for instance, I am suffering in pain, BACK PAIN that is normally eliminated by the Actiq which have now, for the first time in a year kept me out of work. The absence of Actiq not the use of it has affected my life in that I cannot work in the severe Intractible Pain I suffer without it. My injury site, my legs, my groin, my hips are KILLING me, but I'm not squirming like a worm who would dare abuse TWELVE THOUSAND mcg's per Day, I am not withdrawing while writing this comment. This is not the place, not the proper forum, for your AA meeting, not for any of you. If you're against this or any other medication I urge you not to use them, take your snake oils and and stop terrorizing those of it who can use as prescribed find our only peace in medications we are mature enough to understand and USE not abuse. Leave us alone and allow us to enjoy a quality of life most of us haven't enjoyed in years. Read This, imagine what it is like to live this way, every day of your life and go find another drum to beat: http://www.intractablepaindisease.com/
*Note: anyone WITH an addictive personality,an alcholhol or drug history probably should consider using sommething eles. This should e as is for most of us: A Last Resort
Jacob wrote:
I was taking 15 800mcg actiq suckers a day for 4 years for severe back & knee pain prescribed from my pain mngmnt doctor. Thanks to my family doctor I have been off them for almost 2 years now. What everyone taking actiq needs to know that is taking them is that you are addicted to them. I went through 4 rehabs and it was absolute hell getting off of them. I kept telling everyone that I could not deal with the pain but the truth was I could not deal with not having my actiq. It's all a big game. The people who make actiq want all of you addicted. All they see are $$$$$$$$$. They could care less about you. There is no pain bad enough to put yourself through what I had to do to get off actiq. Trust me when I tell you, It is the worst thing you will ever go through. I almost lost my wife, family & job over it. If you are on it, get off it now, if you are thinking about taking it, Don't. I know when you are in pain constantly you will try anything to make it stop, but trust me the trade off is not worth it. The thousnds of dollars of dental bills are not good either because actiq rots your teeth quickly. One more note, I had a brain scan done a while back and they were showing me the pictures and while most of my brain pics were colorful and normal there was a med size spot that was very dark. They told me that it was the part of the brain that the actiq destroyed. They said they see the same thing in heroin addicts brain scans.
BillyBob

Philadelphia, PA

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#40
Jul 15, 2009
 
While I usually don't like to see someone get flamed, I think u are right. 15 a day? I think dosing is every 4 hours so he is way above the dosing and if u were still in pain why not go higher on the single dose, 1200 and 1600 are available.
It sound like you were addicted, not just dependent. I am glad you overcame your demon, but I don't think this is the appropriate venue for what you are selling.
Linda

Wilmington, NC

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#41
Aug 27, 2009
 
I have been taking Actiq for app 7-8 yrs for rheumatoid arthritis and lupus along with related illnesses.(Degenerative arthritis, etc). During that time my primary pain med has been changed and rotated. I have had numerous surgeries including fusions of my feet and and lower back. During the time I have been on Actiq, I have continued on the same dosage of 6- 200 mg lollipops per day. I receive them from my pain management dr. Even with his care, there are many days when I am unable to function. I need an electric wheelchair to get around outside of our home. My husband is still working and his insurance currently pays for the Actiq however I am worried what will happen when he retires next year. Then we will only have Medicare and a medsup policy.( yet 2 be decided). Any advice?

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