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Chronic Pain ffrom Liver transplant
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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????
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77grace responded:
Hi broice1947,
Wow ,it sure sounds like you are going through a really hard time and I wish I had rhe magic answer but ...?
Anyway ,I don't undertand why this new Dr. wants to cut your dose in half,that's a big drop and I woul'nt think it would be safe!!I am on methadone too and I'm familar with doses and such!I am taking about 120 mgs a day and I thought that was high but ....I understand tolerence,this doe's not always work !!!!
Anyway ,why is she doing this????I'm also confused about the Suboxone?Is she going to put you on both????Hope not ,you must be off methadone for a few days (I think ,before suboxone!
CONTINUE....
77grace
 
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broice1947 replied to 77grace's response:
She said after she gets me down to 40 mgs she will put me in detox then put me on suboxone. She doen't believe that I am a;llergic to it.
Thanks you all for keeping me in your loop,
Joyce
 
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seabreezn responded:
Hi Broice -
O'Boy I read your letter and feel for you - I'm in a similar situation in another state . But , this is about you ...if your allergic to suboxone - your other Dr. should have that on his list of your allergies. Have you gotten your medical history from your past Dr. ? It does help if , this Dr. wants to help you - your allergies need to be respected , it can be dangerous !
All over the US healthcare is changing and pain is being viewed differantly but , Hon you need to be your own advocate . If this Dr. is not respecting your allergies or you , request another - but , first reaserch your local Dr.'s through this site , RateMD's is another . Some " pain clinics" are run by Family Practice / Primary Dr.'s , try and make sure you have someone who is an expert in pain . Also . tell the Dr. what else you do for yourself other than the medication - diet , any exercise , therapies ...also , if you have any friends in medicine and you think they'd understand your situation don't hesitate to contact them . If there's any local "pain groups " that could help with names of Dr.'s as well ...I know your probly thinking " where do I get the umph to do this !!! " , do what you can and go easy on yourself but , at the same time you do need to help yourself - it's a quandry = you feel lousey yet , your suppose to have your act together . I'm there , I know ........I wish I could help you more ...do you have a " medical synopsis " ? It's a simple list of date - Dr. - health issue - what was done & result . This is handy for your Dr,'s to look up tests and files .........Take a deep breath , your not alone and you'll rally through this ...I wish you the very best ...
 
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broice1947 replied to 77grace's response:
By the way, aside from the act I am allergic to Suboxone, is it a pain killer because the FDA hasn't okayed it for pain management. My problem is that I was told by the doctor who would be sending me to a Suboxone clinic (even though I am allergic to it), does it kill pain?

Broice (Joyce)[a class="template-reply-post" id="exchange-post-enabled_A1" style="color: rgb(0, 102, 153); cursor: pointer;" onclick="LoginCreatePost(this,'pain-management-exchange','3'); return false;">
 
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broice1947 replied to seabreezn's response:
I bought my most recent records to my possibly new pain management doctor. But I couldn't get the answer from my first doctor (he is dead), my second doctor (who moved to another state to teach). So I bought him the past 10 years of Doctors. There are not any groups that can help in Albany NY. The DEA is all over the doctors up here and the doctors are scared to write prescriptions for any pain killer. I have dropped myself now to 120 mgs andf I feel like s--t, so if I have to return to the doctor for Suboxone, she is going to see one patient in horrible pain, from detox and my "normal "pain. Which can go anywhere from a 8 to (if I can;'t describe the pain, and I had a baby naturally, not to say heart surgery and liver transplant) I can't give you a number. All I can say is I am trying. Broice
 
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ctbeth replied to broice1947's response:
Suboxone contains a combination of buprenorphine and naloxone.

Yes, it is an analgesic.

You experienced an adverse effect from Suboxone, or one of its components, that caused a potentially-fatal response.

You cannot take this medication!

Every MD that you have seen since the S-J syndrome should have asked you about drug allergies and adverse drug reactions. I have been with the same pain management MD for years, yet every visit I am asked to confirm my allergies, which are also severe and could be life threatening (anaphylaxis and respiratory positive to latex)

I'm going to read the rest of the posts on this discussion to see if you give further info.

I'm glad that you posted your first name!

Nice to meet you, Joyce
 
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ctbeth replied to broice1947's response:
Hi Joyce,

Good, you did post more.

Even though your MD has passed away, your records are available somewhere. Your insurance company has every single MD appt documented.

The hospital that treated your Stevens-Johnson syndrome would also have your records.

Your medical record is your property, no matter if your MDs have died, run away to another state.

Please don't be offended- I tried not to be offended about the "foreign" comment- -
But, it is beginnin gto sound as if there's something more going on here.

I have been to many, many MDs since my injuries. Even insurance consultants, whom I visit once and will probably never see again, ask for my allergies. Every office visit with my PC I am asked, again, for my allergies.

I have been treated by MDs in two countries any difficulties obtaining my medical and surgical records.

If you're receiving SSDI, or any medical disability benefits, your complete medical record is available through them.

I had surgeries in another continent, when I was a child, over 40 yr ago, and these records are easily accessible by all of my treating MDs.

Most MDs in my area, and I am in CT and you in NY, will not even accept hand-carried medical records and want them directly from your MD's office, or the MD who inherited the MD's patients after death.

MD's die all the time and their patients notes do not die with them.

If you have had a potentially-life threatening adverse reaction to a drug, and it must not have been terribly long ago, as Suboxone has not been available for very long, relatively, then there would be significant documentation of this event.

Were you NOT hospitalized for the Stevens-Jonson?

Just give the pain management MD the hospital info for your admission and the MD's office can and will get the proper records. Of course, you'll have to sign a release form.

Allergies should be on your MD's notes from every single MD visit that you've had since the event.

Other than that, it looks as if you need a new pain management team.

If your MD does not take you seriously about an ADR that could kill you, he/ she is not the right MD for you- or anyone else, for that matter.

I hope that your appt with the new PM, on Friday next, will prove fruitful.
 
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broice1947 replied to ctbeth's response:
Hello Joyce here,

I wish the day was over and it was Friday already! This is really a horrible feeling. I have enough to take 100mgs per day for 10 days, not 2 weeks. I have to take about 75mgs...from 350. The pain I am having is just horrible. I think this doctor thought I was either lying to her (even after she saw the bottle). How can a doctor say you are not in pain. She isn't in my body. I feel like throwing up half the time and the other is sitting on the toilet! Oh God help me. I am trying to let go of my feeling of "I want to kill her" to "So, I am finally going to die at 66. This is just the worst feeling I have ever had, I am doubled over writing this to you. Can't type anymore got to go now.
Joyce
 
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ctbeth replied to broice1947's response:
my email is BethHuntington@live.com

write and i'll give you my phone number.

i'm available for my pain friends 24/ 7

don't give up!

please call your MD for meds that can help the withdrawal.

i'll check my email within 10 min or so.

yeah, pain is a killer.
 
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77grace replied to broice1947's response:
HI Joyce,
What type of alergic reactions do you have ???But mostly I 'm curious ,did you want to get off pain meds,???Why is she doing this???She sounds like a hard core Dr. to me and one tha atI would not be happy with!Sorry but ,I must speak the truth here,maybe I should just be quite but I don't understand,except I do realize that you are on a very high dose!Why so high??
Take care,I'm here for you ,77grace
 
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77grace replied to broice1947's response:
Hi Again,
I can only speak from my expeience with Suboxone!I went to a Detox and got off Methadone(They gave me the suboxone to soon and I got really jumpy sick and it exasperated the withdrawel but once that stopped it was o.K.Then I wnt home with the script for Suboxone a very high dose they said but it did not help my pain!Also a friend of mine tried nd it did not do much for her but ,a little!It depends on the indivigdeual!
I wish you luck!Maybe Subutex would be better!
Peace,77grace
 
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ctbeth replied to 77grace's response:
Hi Joyce,

I read your email at about 3 AM.

I hope that you're feeling a little better today.

Hang in there; it'll be Friday soon.

Beth
 
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cillie replied to broice1947's response:
Hi Joyce,

I pray to God you are doing ok. That doctor that is trying to get you on Suboxone is trying to get you off of all opoids (pain meds.). Then she will eventually probably get you off of Suboxone. I've heard you have to withdraw from that too.

I have taken myself off of percocette twice and have gone through withdrawal twice. I only did this because of a couple of family members making me feel guilty I was on pain meds. My pain is from two lobectomies, one on each lung. I had stage 3 cancer in one lung and stage 3 in the other. I have chronic chest pain and nerve damage. Even taking a shower makes me cry. So I know how you feel.

If I were you I would go to the emergency ward and ask about a pain management doctor, which is usually the anesthegeologist. You can't go through this. The pain doctor you are seeing now isn't a good pain doctor at all. What does she think you will do for your pain after you are off the meds? The pain will still be there and you will have no meds.

Don't go through this and wait until Friday. Go to your family doctor or the emergency and be as calm as you can, but let them know all the pain you are going through and you need help and this doctor is doing nothing to help you but cause you more pain.

I have tried all the pain meds out there, including yours, and they all make me feel so sick. Percocette does help me a very little, but it doesn't make me sick. It can't be increased much like other meds because of the tylenol. I can't take over 3,000 mg of the tylenol daily. So I can only take 20 mg of the percocette 4 times daily. I save the doseage for the day time so I can function a little, but getting through the night is really rough.

I know what you are going through and the fear and the pain you are feeling right now. You really can't wait and you need some help right now.

God bless you and lead you to the right doctor. Don't give up and don't wait until Friday.

cillie
 
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ctbeth replied to cillie's response:
Hi Cillie,

The other active ingredient in Percocet, in addition to Acetaminophen, is Oxycodone.

Oxycodone is available by Rx without the added Acetaminophen.

It is called Oxy IR, as a brand, and Oxycodone as a generic.

Good luck,

Beth


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