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    Chronic Pain ffrom Liver transplant
    broice1947 posted:
    10 years ago I had a liver transplant, before that for 1o years I lived with right upper quadrant pain due to what was considered end-stage liver failure. At the time, I was referred to a pain management specialist who put me on methadone (because he thought that was the best drug at the time for my liver). I had heart surgery in 1961 that gave me Hep C, ergo bad liver. They put in a liver that was too large for me & my bile duct was twisted,they tried untwisting it with a stint, it didn't work. So, I am now on 350mgs. of methadone per day for pain. I am medically dependent and went to a pain mgmt. doctor who decided to cut my dose in half immediately and then take me down 20mgs.every two weeks until I am at a dose that can be handled by Suboxone. I tried to explain to her that the only time I took suboxone, I experienced a severe breathing problem and swelling problem that was called
    Steven Johnsons Syndrome. She didn't care that was her suggestion as a pain management doctor which I asked my doctor for pain management so that I could drop my dose and because for some reason NY wants people on narcotics to see pain management doctors, and yes I would like to come down on my dose. I THINK IT IS TOO MUCH, AND HAVE BOUGHT MYSELF DOWN 2 PILLS A DAY. Look I am 66 years old with someone elses liver, a bad heart, a pacemaker, and chronic kidney disease. I really don't feel like being 6 feet under until I am ready. I have fought long and hard in my long life for life. The drug methadone has been working. I don't understand this pain management doctors ideas, or whether she cares or not. Does anybody have any ideas for me????
    ctbeth responded:
    Good evening, Broice1947,

    You really have a complex medical and surgical history.

    With this in mind, it seems that discussing with your MD is the best way to know what her rationale may be regarding your medical treatment.

    Please get your medical history records from the MD who documented Stevens-Johnson syndrome.

    This is vitally important, and your MD cannot ethically or legally prescribe a medicine for you that has resulted in such a severe and serious adverse reaction.

    For chronic pain patients to get treatment from pain management specialists seems, to me, the sensible way. Chronic pain is a distinct medical diagnosis and pain management specialists are really best trained to treat our pain.

    Be aware that these specialists treat pain and not the underlying condition that is causing our pain.

    With such a complex history, your primary care MD should be working along with your pain management MD to be sure that the proposed medical changes are not contra-indicated and are safe for you.

    Please take care of yourself,


    ctbeth responded:
    -Stevens-Johnson Syndrome-
    Stevens-Johnson syndrome is a rare, serious disorder in which your skin and mucous membranes react severely to a medication or infection.
    Often, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of your skin to die and shed.
    Stevens-Johnson syndrome presents a medical emergency. Treatment focuses on eliminating the underlying complications.
    Recovery after Stevens-Johnson syndrome can take weeks to months, depending on the severity of your condition.
    If your doctor determines that your case of Stevens-Johnson syndrome was caused by medication, you'll need to permanently avoid the medication and all others related to it.
    Please keep us updated. I am concerned about you.
    An_251029 replied to ctbeth's response:
    Oh, by the way, I had saved up the two pills that every day I did not take, and she wants them to last me 2 weeks. Then down 20 mgs every 2weeks until I am at a dose where I can be put in a hospital for detox and then be put on Suboxone (which I am (as I said before) allergic to. From what I understand Suboxone has no FDA approval for pain management. So what am I to do for the pain? She (the pain doctor) is adamant about this and my Priimary MD said I should do anything she says.
    ctbeth replied to An_251029's response:
    Hi Broice,

    What your PM MD is proposing for you is immoral, unethical, and illegal.

    You are, in a manner of speaking, allergic to one of the components of Suboxone.

    If this MD insists that you take a medicine that can kill you, and will not listen to reason, you really NEED to get away from her!

    If she is not listening to you while she is suggesting a treatment that may kill you, she's not the MD for you- or anyone else, for that matter.

    You can also consider reporting her to the medical licensure entity in your state.

    This is a very serious situation, really~

    Do not walk- RUN from this MD!

    Please keep in touch. I am concerned about you,

    annette030 replied to ctbeth's response:
    I totally agree with Beth. Any doctor who would knowingly put someone on a drug that they had had an allergic reaction to in the past is plain old nuts. Run away and report this so it happens to no one else.

    Take care, Annette
    77grace responded:
    Hi broice1947,
    Grace here!!I could'nt type fast enough to fit it all in .Sorry!
    Anyway ,I really hope you can talk with Her and make her see where your coming from ,especially if you had a reaction to Suboxone!!!
    Please keep me posted !
    Maybe find a different Dr. even if it costs a little more ,it would be worth it!
    Gotta go ,it's bed time!
    broice1947 responded:
    Hello Broice here,
    Well, right now I am sick as a dog, yet have made an appt. with a pain mgmt. doctor that my daughter is seeing for her burns. He likes to stick people first, then give a prescription to her of oxycontin.
    There is no place he can stick me, so maybe he will take me down slower to a more manageable dose. That is all I am asking. I know that I am medically dependent, But, I am now into my third day of coming down fast, And was up all nite throwing up. I can't type anymore. Wow, I caa't believe what coming from 350mgs to 100 mgs can do.
    ctbeth replied to broice1947's response:
    Hi Joyce,

    Oh man~ I was up all night suffering terribly, too.

    If this happens again, there are a few of us who usually post during the wee hours.

    If you'd like someone to chat with, do post and chances are that another member is available.

    I hope that you get so see your daughter's PM.
    Is this with whom you have the appt for Friday?

    Thinking of you,

    broice1947 replied to ctbeth's response:
    I thought some people would be in as bad a shape as me,. I can barely type, the only thing I wish for is for everybody to pray that his doctor comes thru this Friday. It is a long way off for me, because I'm the one who is suffering, Thanks to all of you for your strenths to help me thru the worst days of my life. And believe me I have had bad things happen to me. Nothing tears your mid and soul apart like stopping medical dependence. I wish there wasn't a DEA, I wish there weren't health depts. for doctors to answer to. I just want to be without pain and all I have been put is into pain. Thanks so much Beth,Annette, and Grace I wish you could be with me to hold me up[. I now have vertigo and had 1 seizure last nite.
    The next one I have I wil go to the hospital I am afraid my pacemaker or my kidneys will fail. No kidding. I don't want the hospital to think I am a druggie looking for drugs. But I gotta o what I gotta do.
    Love to all of you,
    ctbeth replied to broice1947's response:
    Hi Joyce,

    I replied to your email before I saw this.

    You know, with the seizure last night and all, maybe the ER wouldn't be a bad idea.

    ERs are not usually particularly kind to pain management patients, but you have a whole lot more going on that just pain and withdrawal.

    IDK if you live with a husband/ partner, nor is it my business other than to get another opinion from someone who knows you and has been there.

    Is your daughter about? What does she think?

    Have you called your primary care MD?
    Seizure is nothing that you should be fooling around around

    Keep in touch.


    broice1947 replied to ctbeth's response:
    I am more scared then I have ever been. My pain is excruciating and I have been having lapses in time. I think I'm having seizures. When I wake up I am on the floor all of my body feeling like a freight train ran over me. Now everything hurts. Should I go to hospital or not. They really can't do anything for me. I don't know what to do.

    Love to all,
    ctbeth replied to broice1947's response:
    Hi my friend,

    I replied to your email and hope that you've read it:
    Joyce, you NEED to get to the emergency room NOW!

    You have my phone number. Please ask Alexa to ring me, or you, if you're up to it, once you've seen a doctor, ok?

    I am sure that there is something that can be done to help.
    What you're experiencing is NOT normal withdrawal symptoms!!


    broice1947 replied to ctbeth's response:
    Well Beth,

    I went to the local ER and they asked me what was wrong and I told them I have had 2-3 seizures and they said "well we cannot give you pain meds, and the seizures are probably fro the huge. drop in medication. We can give you a num,ber of a pain clinic, you can get dressed now" There really isn't anything they can do. So I called the PM clinic and they wanted my files before they will even see me. Those files are now in the Friday Doctors hands. So, I have to make it to Friday. This is the worst experience in my 66 years of life on this great big ball called earth. I really feel like laying down in the bathtub, turning on the hair dryer and dumping it into the water. feel so hopeless, and it is strange I don't miss the meds as ,much as the pain I am experiencing. I will wait til Friday and hope and pray for the best.
    smann68 replied to broice1947's response:
    Hi Joyce,

    you don't know me but I have been keeping up with your posts. i am so sorry to hear what a hard time you are having. i know you're in a lot of pain but i'm glad to know that you're o.k.

    those people in the er sound heartless. how can they let you leave w/out giving you any help?

    don't jump in the tub with the hair dryer-hang in there till friday.

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