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Getting taken off my opiates, Not by choice!

I have been on almost all pain  meds they make and I am presently on morphine  60 mgs 3 times a day and and 15 mg quick release 3 times a day . I was on the 60 mg 4 times a day and and the 15 mg quick release 4 times a day which they just cut down to 3 times a day. I've been doing this for 24 long years. Now the government is going to group everyone on opiates to 90 mg  per day. NEWS FLASH! NOT EVERYONE IS THE SAME!  I had a stomach by-pass in 2001 and the meds do not stay with me like a person who did not have this  surgery. Some people may tolerate high doses and others it will kill them. So how the hell can the government come in and dictate to us what we need for meds. They are saving all the drug  abusers and kicking the ones who don't abuse their meds and really need them to survive. Is there any groups out there to fight this ridiculous law? Animals get treated better than what they are doing to us. I have applied for my medical marijuana card that is my only alternative for now. If that doesn't work out I guess I am up the proverbial  creek!

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1

Comments

  • dilaurodilauro ConnecticutPosts: 12,771

    All the new guidelines and restrictions can easily work with any patient.  You need to have a doctor who is willing to justify the amount of opioids they prescribe a patient.   Doing that, there is no problem and no patient should suffer.

    However, in reality, there are many practices that will not do all the paperwork and justifications to support opioid prescriptions.  Its easier to reduce the prescription or drop the patient from their practice.

    souperbee said:
     Is there any groups out there to fight this ridiculous law?

    In reality , there is no ridiculous law.  It is in the good of every patient to work on reducing the amount of opioids that are required.   Too many long time opioid users find that they need the same levels of dosages to keep in tact.  Many doctors are finding that that is not always the fact.  The better doctors will review all of their patients opioid records and conduct more clinical examinations to determine what is the best level of opioids for their patients.

    This has been working very effectively in many metropolitan areas. Unfortunately, I can not speak for smaller  or rural areas and how they are approaching all of this.

    When it comes to morphine, you are on a relatively high amount.   The standard for moderate to severe pain is 30mg of morphine every 6 hours. But like you said, everyone is different and there really isnt a cookie cutter approach to opioid dosages.

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • peanut006peanut006 MichiganPosts: 147

    I do agree very much with @dilauro. The new guidelines are meant to help. As a guide to doctors everywhere as to what the best practices should be in regards to prescribing for chronic pain. But I do understand and also agree that each patient comes with a unique mix of circumstances that should be taken into account. Do keep in mind, that 225mme per day is an incredibly heavy dose and is not likely to be prescribed by any other doctor, so your doctor may be doing you a bigger favor than you realize trying to bring your dose down. If your doctor were to retire, or move, or stop practicing for any reason, the chances of you finding a doctor to prescribe these doses would be slim to none, leaving you in a horrible position. When done slowly, many patients actually find that they get the same relief from smaller doses, with less side effects, and that's ultimately the goal of any doctor. Greatest function with least risk. If I were in your position with the absorption issues that you have, I think I would speak to my doctor about a non pill alternative instead of ever increasing doses. Maybe something in the form of a patch that doesn't have to be broken down thru your system the old fashion way, bypassing the absorption issues all together. 

    We all share and feel your anger and struggle, as all of us are facing the same climate and similar issues. But the more we work openly with our doctors, the better the outcomes will hopefully be. 

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  • I agree with Ron on this. 

    If your doctor retired tomorrow it would likely be extremely tough to find a new doctor to prescribe the opiate levels you’re currently on, given the current anti-opiate climate we live in.

    There are lots of stories of people out there who were on similar MME as you and suddenly found themselves with no doctor due to a sudden retirement or dismissal due to breaking the pain contract.

    In most instances, those people were lucky to find a new doctor who even prescribes 30 to 60 MME. 

    If I’m being forced downward on medication I’d much rather it happen gradually versus one day suddenly lose my doctor and find myself unable to find a new doctor willing to prescribe what I’ve been accustomed to.

    I’m not saying it’s fair, I’m just saying I’m prepared for anything.

  • Circa year 2000 my mom’s boyfriend (they never married because he had $300,000 in unpaid medical bills) was prescribed 240 Vicodin per month by his family doctor.

    By the time he was 35 he was a millionaire who owned his own construction business, but had to give it up due to non-Hodgkin’s Lymphoma and other medical issues.

    He needed a heart and lung transplant by the time he was 45.

    We rushed him to the hospital in 2000 or 2001 when a heart arrived that was suitable.

    Unfortunately he had an infection of some kind so the transplant surgery was called off.

    He sometimes would blow through 240 Vicodin (oftentimes taking 10 or 12 per day) before his next refill was available.

    Back in those days his family doctor managed his pain and his doctor would even occasionally write him (albeit reservingly and with much frustration) an extra 60 or 90 Vicodin if he ran out before the next refill was available.

    Looking back it was a bit insane to be taking all those pills (and imagine how much acetaminophen that adds up to daily). 

    He would have trouble breathing due to pain and anxiety and then take two Vicodin and in 20-30 minutes he’d be comfortable again for 3-5 hours.

    He passed on in 2016 after a long battle with too many illnesses to count.

  • This is a very troubling problem across the US.  I don't think anyone could say there isn't a problem with drugs in the US.  There does need to be full accountability not only with doctors, but patients as well.  I understand a lot of frustration across the Country because of how some states have taken an advisory and made it policy for their areas.  The doctors that scare me are the one's who have simply cut their patients off and told them to go get pot.  Considering the Federal Government still claims pot is illegal, a patient can feel darned if the do and darned if they don't.

    What really bothers me though is outright disinformation that various medical groups are publishing right now.  I just read an article that was sent out by the Advisory Board (very large healthcare advocacy) that claimed in a JAMA article "Opioids provide ZERO relief for Chronic Pain Patients".  They advocated for across the board reductions and eliminations and to replace medication with essential oils and meditation. 

    At some point, calmer heads have to prevail.  The first step is truth in reporting "Opioid Overdoses".  The government has not (and doesn't plan to based on what I'm reading) separate illegal heroin fatalities from legally obtained opioid deaths from OD or diversion statistics.  The pendulum is still swinging one way on this issue.  It's an unfortunate truth that depending on what state you live in or receive care you will be treated humanely or left reeling trying to find a way to get relief. 

    Keith 

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
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  • I have to agree with all comments above BUT the system is broken! I’m sitting here wide awake tonight way pass my normal sleep time because I can’t  get my neighbor off my mind. My wife and I have known her and her husband for over 20 years. Like the majority of us, she is also a chronic pain patient due to her back. Her pain med MD took her off her Fentanyl patch saying he wanted to try something else. She told him the patch has been working for years with good results so why change it? She called him up 3 days ago to tell him the new med wasn’t working and he said give it time. This afternoon, I walked outside to see the street lined with Police cars, Crime scene vans and the MEs van lined up. The new med she was switched to took away the pain for good! It worked so good she took a 357 and put it in her mouth and pulled the trigger. She was 48 years old, been married for 30 years, Has 2 grown children and 3 young grandchildren. Yes The system is broken for those that truly need it. Ron and Peanut, you are fortunate to be educated enough to be able to communicate with your PM MD. My neighbor wasn’t.

  • Keith, you are 100% correct in your comment in reference to the difference between prescribed medications and abusers of Opioid medication users percentages. The report the public hears on the news and media reports are higher due to illegal use. As a past Paramedic for 30 years 95% of the patients I went to on OD calls were from illegal users! 

  • David G,

    First off, your neighbors family and friends have my heartfelt condolences in the loss of your neighbor and her tragic loss.

    My husband is in law enforcement and is a medico-legal death investigator (coroners investigator), and our eldest works as an autopsy tech in the county medical examiner's office.

    Of all the deaths related to drugs in our area, the largest majority of them are directly caused by heroin , typically laced with fentanyl/carfentanyl. The second largest numbers of drug related deaths are poly drug -benzos/heroin combined with alcohol. The smallest percentage are directly related to prescription overdose/abuse. When the stats are compiled at the end of the year, inter office reports of number break down illegal drug use versus prescription, but when reported to state or federal agencies, all are categorized as opiate related, or poly drug.

    This leads to misleading information reported to FDA, DEA, media, and skewed stats.

    I have repeatedly addressed this with my husband and daughter and their boss, sadly so far while they all agree with me, the agencies requesting the stats have no motivation to change the criteria.



  • DavidG,  so sorry for your loss.  More and more of this kind of thing is happening and it is a shame.  What kind of nation have we become??  Seems we have lost some of our empathy for our fellow man.

    Keith,  I have seen several of those articles claiming opioid do nothing for long term chronic pain.  What???  I must be crazy then because I have been on them nearly twenty years and I do very well.  I guess I am lucky though that I have always been realistic regarding my pain levels and have not raised my dose in years.  Now I am so glad I did that because my dose is within guidelines.  I agree that doctors should be evaluating patients very carefully because there are people who need those higher doses.

    DeLauro is right though.  I have read articles saying that doctors don't have to drop everybody's dose but must substantiate the high usage.  I have read a couple of articles that said they may come out with the idea of keeping these patients that have been on opioidS for a number of years on them, like being t grandfathered in.  There is probably still paperwork though.  I read these articles and my heart really aches for people.  I am so fortunate to have a good PM.

    Cindy

  • My heart hurts after reading about David's neighbor.  This is the story media outlets need to cover.  This is so frustrating.  Like Ron, I am absolutely blessed to have a PM that uses common sense and understands that chronic pain is a real thing and people deserve to live there lives as "reduced" pain tolerant as possible.  I do not feel there is a such thing of living a pain free life.  We all must make accommodations to be comfortable, but we all deserve to be heard and treated as effectively as possible.  I sure wish I had a crystal ball that could see into the future.  Hopefully, calmer heads will prevail and people in decision making capacities will see that the fatalities from drug abuse are DIRECTLY related the BEHAVIOR of the abuser.  I hope and pray that people who are addicts can summon the strength within to finally ask for help.  But I also hope and pray that patients will once again be treated as compassionately as possible, within a structured system that holds physicians and patients accountable and a legal system that will hold offenders accountable as well.  

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
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