Question: Hi. I live in Fl and am a breast cancer survivor after Dose Dense Chemo and a disasterous allergic reaction to herceptin which sent me to the hospital with the admitting note, "Death expected in six to twelve hours." I saw it in my file two years later with my new oncologist. Heart Failure, triple pneumonia with permanent lung scarring. But I'm fine five years later, except that I'm in a constant ankylosing flare that seems to have begun before chemo, but got horrendous since hormonal therapy began. I couldn't tolerate femara and I'm on tamoxifen now. I've been on a duregesic patch of 100 mcgs of fentanyl and 30mgs of oxycodone for breakthrough pain for four years. On Dec. 29 my rheumatologist, who has been prescribing oxycodone to me for 8 years--- fentanyl replaced oxycontin for long acting after I participated in a year's fentanyl clinical trial.-- told me that because of the FL legislature he was no longer comfortable prescribing the oxycodone, but WOULD as long as it was a lower dose. He cut me down to four doses of 15mgs a day. Fifteen mg's did not stop the five or six disabling sciatica attacks in their tracks, so in XXXXXXX I asked him what I could do. He said, "Either learn to live on less or go to pain mgmt. I decided to go to pain management, but a series of mistakes meant I had to wait until late March for an appt. My HMO only has two pain doctors. My rheumatologist continued to prescribe both meds until I saw my lady pain doctor, a board certified anesthesiologist. She took me completely off oxycodone at once and increaded the fentanyl patch to 125 mcgs four weeks ago (six weeks ago she didn't prescribe, because she had to do a urine test). Yesterday I saw her and told her I had a horribly painful month because all my sciatica attacks lasted abouty six to ten hours. She said, "Then I'll increase your fentanyl to 150mcgs and see you in four weeks. I had almost NO time with HER, but she has a PA who was asking me questions he was typing into a computer. I told the doctor I needed something for breakthrough pain and she yelled at me that I was a drug addict and I was NEVER going to get any from her. I said, "What about the fentanyl lollipop?" "No, I'm not giving you ANY opiods." (But she IS, fentanyl). I didn't even address the addiction issue, because she was almost out the door. Today I read a lot online about addiction and learned that I fit the definition of pseudo-addict, someone who is undermedicated. That has been true since Dec. 29, 2011. I phoned the office today and spoke to the nurse who was furious I called. I said I want you to document in my file that I'm having an extreme sciatica attact (it began at 1PM and is still terrible at 11:20PM. I've been taking aspirin with NO relief.) I had left a mssg, actually, and the nurse called back. She'd spoken to the doctor. Nurse said, "Dr. D will treat you with nothing but fentanyl patch" I said, "What about things like ablation and all the other things that are done for sciatica. "No".. "Well aren't there other drugs that can nip a sciatica attack in the beginning,"' "Yes, but not for you. You've failed on all of them according to your rheum'ys records. (That IS true.) I asked, "Could it be piriformis syndrome?" Nurse said, "the doctor will ONLY treat you with the fentanyl patch and you are not to call again. We'll see you in four weeks." I said, "You don't understand. I can't even function. I'm on disability because of this sciatica. It is so bad that I understand why people kill themselves because of pain like this. She is my doctor and she is responsible for doing something about this horrendous pain"
"Are you saying you are going to kill yourself?" "Of course not. I'm much too strong of a person to ever do that. I'm trying to provide perspective. I could chew a hole through this sheet it's so bad." Once again she told me not to call again and I said, "I am going to call everytime I have a sciatica attack, so it's documented in my file in case she refers me to a neurologist." Nurse asked, "How often do you have them?" "At least five days a week. You were there when my history was taken." Nurse said, "Oh, God." And then goodbye. A half an hour later the police knocked on my door. Nice young man. He asked me if I was going to kill myself. I told him no, etc. I told him I'm a licensed mental health counselor with 25 yrs of experience and have a child and no parent has the right to EVER kill themselves, etc. And that my religious life would forbid it according to my own ethics. And I'm a chicken." Cop said, "You ARE a very strong lady. It seems like this call to the police is a retaliation measure. Anything happen? "I began to tell him about the sciatica and then that I had no breakthrough or rescue medicine anymore, but that I had had oxycodone for eight years at least with no increase in dose. He finished the sentence by saying, "So you have nothing to stop the sciatica when it starts? Why don't you have any oxycodone." "This doctor say's I'm a drug addict and took me off it." Then my husband drove up, a very huge researcher with two Ph.D's one from Stanford, and he talked to the cop for a long time and I came and lay down. One last thing: The doctor said she'd see me in 28 days and I said, "No, I'm going to make an appointment to see the other pain doctor. She screamed at me, "OH NO YOU AREN'T. I'M NOT GOING TO LET YOU PIT ME AGAINST ANOTHER DOCTOR. I'M BLOCKING YOUR ACCESS TO THE OTHER DOCTOR." I feel completely bereft and afraid to be on 150 mcgs of fentanyl. I believe I NEED breakthrough medicine and that oxycodone is the safest one for me because I was stage 3C with the cancer tumor which was extremely agressive. My rheu. said the others are harder on the immune system. As a cancer survivor I can't be on enbril or remicade. There was never any abuse or dose escallation, only the dose decrease. I feel shoved into a corner of pain, prison of pain. Jung said that Love and Power are a pair of opposites. As a shrink I've found that to be true with my patients. Clearly, this doctor is located at the power end of the continuum with ME anyway. I don't have the money to go private pay out of network. I am in an adversarial relationship with her. I think her 'evidence' that I'm a drug addict is the fact that I asked to be kept on oxycodone for breakthrough pain. I don't think it would be fair to ask my rheumatologist to prescribe anymore. And I would NEVER risk my license by getting controlled meds from two doctors anyway. And it isn't eithical. I feel there is and never will be any flexibility with this doctor. Do you think I'm an addict? Once I asked my rheumy that about five years ago. He said, "Do I THINK?" and laughed and said "Of course, but you don't abuse and you need these meds, and i will not let anyone cut into your spine. I think you will be on this dose of these meds for the rest of your life, so why does it matter if your addicted?" But I went to a suboxone doctor ANYWAY. After I could, I started the suboxone and called Dr. B five days later crying hysterically because my fibromyalgia and all over body pain was so aweful. She said, "Pamela, I tried to discourage you from the beginning. You were not a candidate for suboxone. I'll call your rheum and tell him about this. We are close colleages. And, you qualify for a sublingual fentanyl trial that I'm monitoring here in this part of the state. You could help society if you enter it. That is how I got on fentanyl. There have never been any problems until Dec. 29 and now this new doctor. PLEASE tell me how to get the medical care I need now that she has obviously written in my file that I'm a drug addict? How can I get help? Ankylosing spondylitis sciatica is the worste in women of all sciatica. It is like an abcessed tooth where I wallet would be if I was a guy. I'm sixty-one by the way and in good shape. According to the things I've read online about AS and acute sciatica a strong opioid at the beginning of an attack is standard of care. But she's cut off access. If I did get up enough cash to go to a private pain doctor, they might treat me the same way. I'm so scared.

I think what you wrote was good, but you missed the point of my question in the first place, so you didn't respond to my question. I'll try to make it more clear.

I referred MYSELF to pain management to get back on the same doses of medication that allowed me to live nearly pain free for many years--- at least four on 100 mcg of fentanyl and 30mg of oxycodone three times a day. I picked the pain doctor from the list of TWO that my HMO would pay for me to see. The other one was on medical leave. (I went to him for a while ten years ago and he would have just done it. I know him. But now he's been replaced by another MD. Maybe his medical problems were very serious.)

In my first visit with her she said she thought it would be best to raise the fentanyl to 125mcg and keep me at 15mg of oxycodone four times a day. Between then and my third appt, three days ago, six weeks after I met her, she decided she would NEVER prsecribe me ANY oral opioids because "I think you've become a drug addict."

You only mentioned the good things about fentanyl and the fact that the MD might not want to prescribe more opioids because of respiratory issues. I assure you, that is not the case. Because at the second visit four weeks ago she refused to write for oxycodone and put me on 125mcg of fentanyl. I had a horrible month, because when the sciatica attacks began, I could not stop them. I also had breathing problems. I've monitored my breathing since the triple pneumonia and know it's shallow. But it was twice as shallow on the increased fentanyl of 125mcg. I told her that at the beginning of the appt a few days ago. She ignored it and said she was raising me to 150 mcg fentanyl. I reminded her about the breathing and asked her to just put me on what worked all those years. That's when she said I was a drug addict, because she said oxycodone is pleasurable and fentanyl is not. So, I said, 'Then what about fentanyl for breakthrough pain, so I can have some way of stopping these sciatica attacks". And she screamed at me, "Don't think you will ever get an oral opiod from ME." and then I told her I'd be seeing the new pain MD our HMO hired next month. That is when she said she'd block all access to him so I wouldn't be pitting her against him. (Another doctor at our HMO, my husband's wonderful psychiatrist, told my husband two weeks ago to get me away from her, that she is horrible, and that he knew the new pain doctor, and that the new pain doctor is flexible and liberal with opioids., and that appeared to be what I needed. Fentanyl being synthetic like methadone.)
I think you didn't realize how important the oxycodone issue is. Doctors like that make people like me appear to be drug seeking, because we really ARE drug seeking. We are drug seeking because we know how to manage our lives. If I was asking for an increase that would be different. I have not had an increase in eight years and never asked for one. I actually think I got through chemo so well, because DURING CHEMO ONLY my onc increased the oxycodone. Ooops. I got that wrong in a way. He did increase it. He increased it from 15mgs 4 times a day to 30 mgs four times a day. When I finished chemo about seven months later, he referred me back to my rheumatologist for pain med prescribing. I went back to 15mgs for over a year. After a year on FEMARA I developed fibromyalgia (look it up-- the pain profile re at least a third of women on Femara). ( I was tried on all the other AIs with even a two month drug holiday, but the pain didn't ease up much, some, not much.) Finally my onc called my rheumatologist who told her a big percentage of his pain patients were recent BC survivors on hormonal therapy. THEN he raised me to 30 mgs of oxycodone 3 times a day AND he added long acting oxycontin, but I can't recall the mgs. I think it was 60 2x a day. About two years later is when he laughed and said, "Of course your addicted. What difference does it make? If you ever NEED to go off these meds I'll help you with titration or suboxone." Then I ended up going myself to the suboxone MD who I wrote to you about, got into the fentanyl trial, and ended up when it was over being switched, with no request from me, from oxycontin to fentanyl patch 100mcg.
I know you will think I'm an addict. All my research on addiction shows I'm chemically dependent, but because of the patch I'm not developing any more tolerance. Yes, it's almost seven years since hormonal therapy began, a lttle long, but my oncology team have reasons to go beyond five years on the tamoxifen. I have one more year on it.
What you did not address is why did this doctor increase my fentanyl by 50 percent and take away my rescue meds, especially when I mentioned the new breathing problems and she knows I take 2mgs of klonopin before bed every night. I think suggesting that she give me fentanyl (true, there is no pleasure with it) for breakthrough, the lollipop, was a way of not seeking oxycodone.
My husband met two people in the pharmacy this week who decided to change doctors after two recent visits with her because she did the same thing to them. She took both men completely off oxycodone and put them on the patch. And she called them drug addicts. They are professional men in their sixties. She's around 40, very petite and very beautiful with hair to her waste. She flaunts her beauty.
I have a goal. My goal is to go back to 100 mcg's of fentany (or the equivalent in something else long acting) and 30 mgs of oxycodone three times a day or as needed. I always have extras at the end of the month (or HAD them until Dec. 29. A new law -- very strict-- began on XXXXXXX 1 in FLorida. Now only pain md's can prescribe oxycodone, but letitimate people like me did not cause the problems the cops have with oxycodone diversion.
It's safety profile is good and it stops my sciatic flares dead in their tracks. I am not exaggerating. Since she took away the oxycodone, I have had five flares a week that last a minimum of six hours. The flare that ended yesterday lasted THIRTEEN hours. I do swim, stretch, use cold and heat. Yes, I do all those things.
Why would I need a support group? I have an international on-line artisan jewelry business. Please go see my work and a pix of me. WWW.WWWW.WW I make jewelry every single day and I love that, plus, I'm a very well known psychotherapist in this county in private practice. Doctors come to me (but only for relationship problems. Most of them are too narcissistic to come elsewise, the men anyway. I have had sincere female physicians as clients). So, when I'm not leveled by sciatica I can function fine.
Look, I know you aren't making much money on this internet thing. My husband, a PhD psychologist also answers questions on one of these sites.
I need you to be direct. I know you cannot get inside HER head, so just direct ME. Is there any reason medically you can see that the tx plan that worked so well is bad for me and if it is not, how do you suggest I reimplement it?
Thanks.
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