An effort is underway for a multidisciplinary group of clinicians to respond to the July 25 PROP petition which requests that the FDA support major label changes to chronic opioid use. A comprehensive discussion among practitioners and interested stakeholders can be seen at this paindr.com blog post.
As a first step to garner support, a new group has been formed known as PROMPT (Professionals for Rational Opioid Monitoring & Pharmaco-Therapy). Clinicians were asked to come forward and offer their support in an effort to draft a response letter outlining significant flaws in the PROP proposal, offering a more reasonable approach that is less likely to adversely affect patients that require legitimate chronic opioid therapy and also to support clinicians in the trenches that are trying to care for these patients.
The current membership list can be viewed HERE.
If you wish to be added to the list of supporting clinicians, please “REPLY” to the “COMMENT” immediately beneath this blog post with your name, credentials, and affiliation (if appropriate). Your name will be added to the signature list below and deleted from the “REPLY” section.
THANK YOU ALL FOR YOUR DEDICATION TO PAIN MANAGEMENT AND SUPPORT OF PATIENT CARE!
27 thoughts on “We Intend to be PROMPT with a Challenge to PROP FDA Letter”
Please Help New Jersey patients, with the new opaite law and now Blacklisting companies rating patients on whether they are abusing pain meds. As a patient I call Patient number one. I found a paper on my doctor’s decks with a score of 78 with chance I will abuse opiates. How is that legal or possible. As patient number one I have been on Suboxone since before it was released to the public. Drug tested every month and mandatory doctor visits every month. Maybe the first 20 years I could say it kept me away from opaites. Now deep into my 50’s and was declared permanent Disabled by the state of NJ way back in 1998. All my life I have played Extreme sports and wont por you with the pages long almints that I have. But recently I find myself locked out of being help at all by Hospital and General Doctors. My injuries can not be fixed , there is no operation to fix me. Worse yet a lifetime of football and hockey I feel that CTE may be setting in. If concoctions is the measure then I guess over 30 times is real bad. Yes , with all my accidents and injuries being knocked out was a common thing to me. Still with the fighter in me I kept training and keeping healthy as a Extreme athlete does. But now it’s all catching up with me and like my father said “you will pay some day for those injuries “. Well Pops was right , being on Suboxone so long even getting dentures put in becomes a nightmare because. First opaites dont work on me anymore after 20 years of suboxone. Second is the Horror it is going from suboxone to opiates and then back to suboxone. There is a word for it , Precipitated withdrawal. Let me tell you , That is Hell on earth and my doctor makes me go through it alone. Yet every paper or internet article says must be done by your Doctor. Besides Medical Benefits costing me over triple what it was and over thousand a month. What am I paying for or forced to pay.
With the sadness I feel and the training I have. I would think it would be safer for the community to put me on high doses of opiates rather then the Monster they are creating. I am at the point something must be done. I was a born fighter and if that’s what it takes to die without pain. Let’s Roll because I’ve had enough of pain and no help from doctors. Jumping to street drugs , well i dont roll like that since i was a kid , I’m over 50 now and dont feel that going to jail for chasing drugs is the right move. Plus I believe in a thing called Honor and Respect. Yet these laws , blacklisting and no help from Doctors. It’s on your hands the Monster your creating. God Bless everyone going through this. I pray someday we are heard.
I am one of many that are having to get by on far less med’s than used to work for me. I am having problems getting even nor co filled and I was taking morphine. The people that are abusing pain med’s are hurting the people that need them just to get by a day . Also the people that are making this new law are not suffering or they would think about it.
I know exactly how you feel and im so sorry ,its rough trying to live on less.The people that have pressured our President to do this are probably ones trying to make sure hes not re-elected ,i believe it is all tied together.
Im 60,i fell at work messed up my neck and back.Ive had 2 neck surgeries and now ive had major back surgery last year and still not over it.I had to have L-4 &L-5 removed ,replaced with spacers,rods,and screws,he said it could take up to 1 yr. to11/2 yrs.to heal completely, i still cant stand long or bend down.Both of my knees need replaced,i have fibromyalgia, bilateral sciatica and peripheral neuropathy. I also have plantars facetious. I have IBS with chronic constipation, distended gallbladder they wont remove because it doesn’t have sludge or stones in it,but im nauseated constantly. I have carpal tunnel syndrome in both hands ,trigger finger in both.Due to all of my falls i have seizures,,osteoarthritis and continuous pain all over.Ive had C4&C5 fused and C7 screwed,with narrowing in many of my disc from degenerative disc disease and falling.I dont know what well do but im writing anywhere i can ,because its against our rights,and its not FAIR FOR US TO HAVE TO SUFFER BECAUSE OF PEOPLE WHO DIED BECAUSE OF THERE ADDICTION. II UAVE BEEN ON THEM AROUND 10 YEAR AND IM NOT ADDICTED TO THE POINT ID BUY THEM OFF THE STREET.IVE BEEN DISABLED SINCE 2006 AND THIS REALLY WORRIES ME.FOR THE LAST YEAR WE CANT EVEN FIND PHARMACYS TO FILL OUR PRESCRIPTIONS IN HAND,IM REALLY TIRED OF IT ,AS SICK AS I AM EVERYTIME I GET MINE I HAVE TO RIDE AROUND TRYING TO FIND A PHARMACY TO FILL IT ,ITS WRITTEN BY A DR. WHY WOULD IT NOT BE FILLED THIS IS STUPID.
I am on morphine ER, morphine IR, gabapentin, cymbalta for excruciating fibromyalgia. After years of being on this formula and having some quality of life, my doctor now states that he will pull my morphine and supply no alternate pain relief. I expect to be bed-ridden, then screaming in pain in the hospital, then committing suicide by June.
All because the politicians want to play doctor.
Well, that’s one way to get rid of those of us who are just a lot of useless, pain-filled humanity.
Dr Fudin, you may remember me. My name is Carolyn and I emailed you a few months ago when I found out I have cancer abd that no Kentucky Dr would help me since I am on suboxone and have been for a few years now. Now I’m losing my life to this rare cancer and I am still begging these doctors to help me. I’m in so much pain that it actually causes horrible sweats, dizziness, confusion, and vomiting. I’m now labeled a terminally ill cancer patient, and I’m 37 old. I see an Oncologist at the Markey cancer center at University of Kentucky. I am also treated like a drug addict by these doctors. I was given suboxone 4 years ago for back pain, not for abusing heroin or pain meds. Hell I am given 600 mg of ibuprofen 3 times a day for pain when I’ve been ate up with cancer for over a year and in complete agony 24/7…….. I’m mad, heartbroken, and confused on why no one will help me. I REALLY REALLY NEED SOMEONE THAT CAN HELP ME, I DONT WANT TO DIE YET BUT I DONT THINK THERES ANYTHING THAT CAN BE DONE NOW. I just don’t want to suffer through what time I do have left because no one wants to help me or listen to me. If anyone knows what I can do to help my situation please reply and let me know.
I too am a legitimate chronic intractable pain sufferer. All day evrry day I search the Internet for petitions and support groups and movements on fighting back against the DEA and the government for the hell we are all being forced to exist in. I had two failed spinal fusions that left me with severe nerve damage. I also have three herniated discs, degenerative disc disease, stenosis, fibromyalgia, osteoarthritis in hips and spine, migraines, cervical disc degeneration, complex regional pain syndrome, sciatica, pancreatitis, and because of this hell I have anxiety and depression. I have been with the same neurologist for four to five years. Prior to him, I was with a compassionate pain doctor who believed in me. I went thru years of physical therapy, epidurals, discetomies, nerve blocks, facet injections, trigger point injections, massage, chiro, tens, accupuncture, NSAIDS , tried all other medications. Opiod therapy was my last resort. Once I was put on the proper dose my pain was finally at a managed level, I had a QUALITY OF LIFE. I was able to do simple things many take for granted, shower daily, walk my dog, go to my sons games, cook a meal, do laundry, etc. That doctor had me on oxycodone 30 mgs every four hours along with oxycontin 60mgs every twelve hours. It was such a relief to have the pain lowered to where I coukd enjoy life again. Then that doctors practice closed as the DEA felt he was somehow part of the cause for this so called epidemic . We were left with nowhere to turn. No doctor would touch me. It was a nightmare clling all over NJ to find a new doctor, one that gave me suicidal thoughts. I was made to feel like some junkie or pillseeker. Every place I called Id start out by asking if they are accepting new patients. Id be told yes and then when id state the medication I was on their attitude would change and I was degraded, belittled and was told things I don’t wish to bring up. I finally found the neurologist I am with now, but my meds were immediately cut back. IHe cut the oxycodone back to every six hours and I explained to him its like clockwork at the four hour mark and how the pain starts to increase and the meds wear off. He agreed that I could put myself on a schedule where I took it every four hours during the day, 6,10,2,and 6pm. Then at night I woukd take the soma and get some sleep. It worked for me. For years I was on the same dose with success. Then last March, almost a year ago now, he flipped my world upside down. Changed all my meds. Took soma away, changed oxycontin to morphine sulphate er and lowered the oxycodone to 20mgs. It has been sheer hell. I have no QUALITY OF LIFE AT ALL! I pleaded with him a few months ago to please put me back on the 30mgs, what worked for me. That is when he tried to make me feel like something I am not, told me i was bargaining just to get pills. I lost it on him and told him do not make me feel like that when he knows dam well im legit and how he sees me suffering. Then out came the needles once again as for the past four years he gives me the nerve blocks, facet and trigger injections. They dont even work but in order to get pain medication I have to get injections that are in the thousands,all about the money, not the patients suffering. Hes also made his degrading comments to me at each visit I go in, He did switch the oxycodone to 30mgs but every eight hours and lowered the morphine to just 60mgs in the morn and 20mgs at night. It does nothing for me and theres no way I can go eight hours. Ive had it, Ive been trying to find a new pain dr in NJ, and once again I find myself back to the beginning, where I was at years ago, being degraded and belittled by drs offices that dont even know me, have not even seen my medical records, just judge and label me as a pillseeker/addict. Once again I find myself at my breaking point and ask myself daily why go on..This war on legitimate patients is only going to get worse and I can see how so many legitimate patients take their lives due to inadequate pain relief and being turned away by doctors left and right. If anyone knows of a dr in NJ they can refer me to my email is firstname.lastname@example.org. I am not making it and cannot bare to be mistreated by one more dr. Thank you Dr. Fudin for your support for chronic intractable pain sufferers. God Bless..
Oh my dear lord! You poor thing. I feel for you!!! I had a left knee surgery and before the surgery I had horrible pain. Tried giving me Tylenol number 3!!!! Unbelievable for what I was going threw! Could not get into the surgery for three weeks!!!! My regular dr. Gave me methadone which helped. When I was going home from thehorrible surgery the dr. Gave me again Tylenol no. 3. I would of been screaming and not. Be able to move! You have to go to physical therapy and no pain medication that would cover it as I went to physical therapy !!! If my dr. Wouldn’t of given me methadone again for physical therapy I would never be able to get back on my feet and go threw the exercises I would be stuck in a chair! Why do they ( the Drs.) not want to give you pain meds. After surgery and before surgery ! We don’t live in caves anymore! I Now I have to get another knee surgery on the next knee! They don’t want to even give me medication that covers the pain! They make me feel like a drug addict! I’m soooo scared that when I get the surgery no one will help me with pain meds!!!! I’m scared to death! They seem to just want the money and not give a shit about the patient! Very sad!!!!
I have been on 330 MG equivalent of pain medication for 5 plus years. I have cervical stenosis, degeneration of the discs spondylitis, compressed vertebrae for 3o years. It took my 3rd pain Dr to get me to a point where I could get out of bed on my own and go back to work. I have been able to work for several years with this regimin. Sometimes I would try to back off just to see what would happen. What happened was it took 3
Days to feel better. The pain is so bad
I feel worthless, I feel like just staying in bed and the pain is equal to that of a knife being stabbed in my neck and back. It is chronic so it doesn’t go away. Kaiser is in implementing this and is starting to cut me back on breakthrough meds. I know for a fact I will be bed ridden for life. Never to pick up a grandchild, never to go to disneyland, never to do house work, never to to be at all productive. Although pain has worsened over the years and I have other issues in combination which has made me disable. Since when has 1 size fits all tied in with health care. Why is the fda doing this. Kaiser is all for it as other hmo’s because they save money. Billions and billions. However they still.get a copay. I was told to switch insurance if I don’t like it.
IS THIS RIGHT? IS THIS LEGAL. the definition of pain is what the patient says hurts. I know my pain doesn’t hurt anybody else. I want to fight this.
Not just for myself but for those worse off then me that can’t fight anymore.
Hasn’t the Bean counters read there is an epidemic of heroin. It has grown 10 fold since dr.s became intimidated by the govt. So now your going to have people buying illegal drugs to get their pain controlled. There will be overdoses and death by peoe that would never consider using heroin. For a country that has spent trillions on the war against drugs they are creating a Newark and a market of baby boomers on top of it. If they think that would never happen, it already is all around the country. For the kids that steal the medicine. Guess what they are now on heroin they already gave up on granny’s Norco and oxy’s. Somebody please aile so I can join the movement.
It is now 2015 – has PROP been passed as a law? I have been on opiates for 15 years – and would do just fine on 150mg morphine/day – but I made the mistake of telling the pain “doctor” that my HMO assigned me that – right now on 120 – but they want to lower it below 100mg or worse give me methadone which I do not believe is a safer alternative. I know my body and have never overdosed or had a problem – but now if I need a little more on bad days (one time my thyroid levels dipped and I was experiencing more severe pain which got better with thyroid increase) – like rainy days – then I might be stuck with a few days pm 90mg/day, which leaves me so uncomfortable that I am stuck on the couch with a heating pad or hot water bottle on my knees an legs – I had polio when I was younger, and after a severe car accident when I was 40 I had increasing joint pain and muscle problems – when I started taking opioids in my mid-fifties, it was a miracle for me – now they want to let me spend the few years I have left in pain and inactivity all because of this PROP thing and because some people are irresponsible. What can I do?
Beth, PROP has not been passed as law. See Hooray for the FDA: Opioid Relabeling Decision is Spot On!
Everything you said I’m finding out the same thing! No one gives a crap if they don’t go threw this pain! They did the same thing with the methadone to me! Itcovered the pain the best . Why would you give something worse that dosnt work instead of giving something that let’s people be able to work maybe laugh and do things like normal people!! This hole thing is discusting! I guess they want us to die off!!! Why would drs. Give medications that DO NOT HELP!!!! They do not care if they are being able to get around!!! This hole thing is horribly discusting!!!!! My dr. Is trying to give me gababentin and I read about it and it’s does not work for all the stuff I was reading here!!! It’s for diabetics etc. I’m not in that category !!!
I’ve been on opiate regime x14 yrs.being a veteran now even with the VA in the news,pain clinic Dr doesn’t listen.I was dx with peripheral neuropathy EMG,verified.I injured my knee(3torn cartilage-)/was due total knee replacement surgery,however,a misdiagnosed error of bronchitis instead of the proper dx CHF has set surgery off indefinitely.Now,pain Dr wants to redefine my issues as fibromyalgia to force Lyrica,I can’t take gabba based medicine,throat tightens,Cymbalta,literally almost killed me.if the medicine is terminated,I will stop existing.THIS happened 4 yrs ago,medicine terminated no warning,no detox-I couldn’t handle pain I called the cops,asked them to shoot me.they understood,and got me a doctor who helped.NOW the VA is doing it again.NO accountability ..,you can treat patients any way you choose.IT would kill me,I am scared.THE doctors WON’T LISTEN.I’ve never asked for increase,never missed pill count,NOTHING!
Oh my gosh! You poor thing!!!i had a total knee a couple years ago and now I’m having to go and get the other knee done! My doctor is trying to give me gababentin and it’s garbage and not good for you at all! I was on methadone for my back and now that my knee is toast and I have the surgery scheduled . For the other knee I’m not getting shit for the pain!!!! My dr. Is trying to get me to take gababentin for diabetics !!! I don’t have diabetis! She gives me four methadone a day after she has given me eight a day in the past for my back! She has cut me to four a day. Can’t get through the day on four and she dosnt give a shit! What did we do when we are in pain soooo bad ? They do not give a shitabout people with pain! I have my knee surgery schueduled and they do not care what you say or do . It’s hurts so bad and I have begged her to give me six a day and she won’t even though she used to give me 8 . This hole thing with the government is the problem! They don’t care about pain total knees backs or anything! The fking government dosnt care anymore! They don’t want to give anyone anything at all anymore! Giving out gababentin like candy! Why is all this happening?
THANKS TO ALL OF YOU HEALTH CARE PROVIDERS THAT ARE SPEAKING OUT FOR US CHRONIC PAIN SUFFERERS.
I am a chronic pain sufferer. I was diagnosed with Fibromyalgia 6 years ago. I went through such a humiliating ordeal to get diagnosed and treated. I have been called a Hyperchondriac, and lazy. I just wanted to get some relief from the daily pain I was having. I have had to sign contracts and take drug screens. I was told the drug screens were for verifying that I was taking the pain medications and not selling them. I adhered to all of these policies and never broke a rule. I am now being weened off all my pain meds not by choice, I was told that was my only option. My pain meds gave me some relief so that I could have a somewhat quality of life. I have been diagnose with Major Depression Disorder because of the chronic pain and the stigma that goes along with being a Fibromyalgiac. These pain meds are the only reason I am here today, had I not been prescribed these meds 6 years ago I would have committed suicide. I could NOT go on in this pain any longer. Life for me wasn’t worth living anymore. I am horrified at the thought of being weened off of them. If I have to live with the chronic Fibromyalgia pain without narcotic pain meds I will probably fall back into that dark place of contemplating suicide.
Anthony, I wish I could do more than reply! I am in the same boat!!! The doctor who wonderfully (so I thought) started me on narcotics, has now suddenly moved out of town, and left someone in his place who is trying to take all of us off them! They have helped more than anything,!Though the doctor who moved was making fun of me in my records every time I saw him, and trying to “help” others by mailing prescriptions. Why that is even illegal I’ll never know!
But now, no one in my city will take me on as a patient!! Why is it ALL the pain doctors only offer INJECTIONS???? what good do they do, and the time away from home kills all of us!
I had hoped to see doctors here, but it’s only patients!!!
There are doctors here, but that won’t probably help your situation. Where are you located?
My wife has been on a opium regiment for three years for back pain and a new dr is now putting her on methadone even though she has heart issues that can escalate with increased blood pressure or heart rate can this pose a problem you can contact me at email@example.com
I can understand exactly where you are coming from. My doctor has been cutting my pain meds in half every month for the last 3 months and I am living with chronic back pain now with arthritis in my hip it is unbearable without pain meds I am scared that I am going to be cut back again very soon and I have begged him the doctor that I am in pain and it is like he does not believe me and does not care I would like to know if there is anything or anyone I can contact to do something about this. Not living with pain would be nice but it is impossible with this new proposal to cut pain meds from people that really need it I have had to back surgeries still waiting to have my final back surgery and I’m continuously getting my pain meds cut down which puts me in more pain every month
Just wanted to add that I have been on pain meds for the last 10 years taking equivalent of 200 milligrams morphine daily was able to deal with my pain now I have been cut back so far I am in severe pain and it seems like there is no one no doctor that I can go to to get relief because of a few people that do the wrong thing it affects people that are trying to lead a real pain-free life and cannot because of other people’s thoughts as someone else said walk a mile in my shoes and see how you feel they will never know how I feel all I can do is tell them and I am talking to closed ears that do not listen what is a person supposed to do?
That is so stupid of the government taking pain medications away from good people with horrible pain!!! They do not give a shit at all about the United States citizens !!!! They don’t want people getting free stuff especially pain meds!!! Putting people on the horrible crap for my total knee surgery that I thank god I have insurance! BUT the a-hole doctors won’t give you pain medications. The last total knee surgery I had the dr. Gave me Tylenol 3 to go home on! Screaming in pain and that’s what I got going out the door on the 3rd day!!!! Plus physical therapist !
THANK YOU, and prayers for continued support especially with September being Pain Awareness Month !
If further laws are enacted to take away my right to pain relief my life will be destroyed. I have been a responsible chronic pain patient for almost a decade and I do NOT abuse my medications. I take them because I have severe chronic pain which interferes with my activities of daily living. If these medications are taken away from me, I will be bedridden and possibly dead because I do not think I will be able to live with severe, chronic pain for which there will be no relief. Stop punishing chronic pain patients because there are people who abuse these drugs. There will always be an element of society that abuses these medications just as there will always be an element of society that lives off of the government, etc. Enacting laws to make it harder on people like me is not going to stop abusers from getting their high. They will get it, but they will get it illegally or via another form of drugs. However, a person such as myself will end up bedridden or dead from committing suicide because they can no longer handle the pain. Do not judge until you have walked a mile, or a foot in my shoes. You wouldn’t even make it a foot in my shoes before you screamed and cried that you couldn’t do it. Trust me, it’s that painful to be me and to live my daily life. While others are going about their daily lives with no pain, I must go about my daily life with pain and if I did not have some relief, I would not be here. I thank God every day for the medicines that have given me a life again. Thank you.
I have been a responsible user of opioids for my back and leg and nerve pain for almost 12 years now and if they pass prop my whole life will change in the following ways , I no longer will be able to responsibly provide for myself and my family of five because without my medications I would be in too bad of pain to even walk or sleep or take care of my family at home or financially so prop would not just effect my life but my entire families lives so please people stand up and speak out against this props petition and allow us responsible opioid users that need these medications just to live a normal life like everyone else has the right to and fight to stop props petition. Thanks together I feel we will make a change.
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All I can say is thank you doctor thank god there are still sensible doctor’s out there that stick up for us.