I went through the original Pegintron/Pegasys chemotherapy for HCV type 1b (48 weeks) and before I "lost" my doctor, and at the peak of interferon/Ribavrin side effects I was on 240mg TTD methadone, and 6mg TTD clonazepam. After the chemo, I began a taper of the opiates, working with my family doctor...getting down to 120mg OxyContin TTD with no change in the clonazepam as it had been prescribed for previous seizures and numerous PTSD and a slew of related anxiety disorders.
After I lost my doctor, the nightmare began. At that time buprenorphine was being touted as the miracle, non-addictive opiate detox drug I was placed on that and I followed the protocols, and titrated up to 16mg, then (believing the hype) in 22 days dropped to 2mg...about 12 days later the w/d started then built to unbelievable withdrawal that two weeks later were beyond belief and causing all kinds of problems (pain like kidney stones) when I found a doctor, I requested to go to a pain clinic which I did only to be told Suboxone was all they did, and the adverse effects precluded him prescribing more of basically the same medicine. My father had gone with me, yet when both of us told my "new" doctor of the result we were bot accused of lying and I was terminated.
I ended up at a low-income clinic, and had to sign a CSA. I never displayed any drug-seeking behavior, never requested early, all UA's and blood work were correct, I worked closely with the new doctor over four years, dropping to 75mg TTD and was cut 33.3 % of the clonazepam from acceptance as a patient.
Things went along fine until last October. I developed a severe respiratory infection that testing showed pneumonia, strep and squamous epithelial cells. I then lost an average of 10 pounds a month, dropping almost 55 pounds by March, when I had to sign another CSA (ACA approved "zero tolerance" agreement. In August, a pharmacist first gave me a wrong medicine, called and asked me to bring the bottles back for exchange, at which time I was given 3X the strength of generic oxycodone CR, which he brought out in front of a couple dozen customers in line and watched me take. I had to go to the bank to get money for the enteral nutrition, then stopped at a grocery store, thinking I was suffering another fatigue attack from the muscle cachexia.
I had everything in my car stolen while in the store by someone who pried a window back, and lost a camera, tools, a change jar and of course under my painting tarp, my medications. I called the police, who determined how the car was broken into and turned the report over to my doctor's office. Unbeknownst to me was this new zero tolerance/no excuses guideline, and as a result I was referred to pain management. Since I had been working to get off the opiates anyway, that appeared to be okay.
Then I found out all the procedures, and the fact that ONLY SSi, SSID, and dshs patients had one option: Suboxone and immediate discontinuance of 15 years of clonazepam. My Mom was an RN Office Manager for a psychiatrist, and knew part of the abrupt cessation on the psych meds, which got me to doing research and what I found terrified me. The opiates are hard, scary and painful, but rarely if ever fatal with any long lasting danger. Not so with the clonazepam. After reading the Ashton Manual and a number of studies, the fear, anxiety and developing phobias increased to immobilizing fear.
Looking for some kind of advocate, I turned first to the 8 million member-strong Pain Relief Network, only to find the entire PRN was "defunct" and Siobahn Reynolds after having the whole government come at her, had "died" in a small plane crash. There are no other advocates, so I asked my doctor if there was any inappropriate things I had done as a patient. He told me I was actually one of his best patients in that regard, always willing to do research, (I was a journalist) and we would discuss things. I always followed whatever decision he arrived at. So I asked him, "then why" and it turned out he was not the one who did it, it was another physician's ARNP who "rubber stamped" this CSA thing, as he was on training followed by vacation, and apologized saying even he didn't know of the financially discriminatory aspect or he never would have let it get that far if he had.
I went through hell with the Oxy, but trying even the slightest combination of withdrawal from both, has caused such deep fear, with the knowledge of the BZD withdrawal have caused such fear, it has been and is affecting my health, the increase in pain has complicated the issue, now involving cardio-respiratory problems. A spiraling downward health, with no help.
It could be just me, but I can only take so much of this, before the combination of all the disparate elements will lead to systemic breakdown. When I was 6'-2" 220, I think I would have had a chance. Not now at 160, HCV 50 years, diabetic after chemo, pretty much constant tingling down left arm, no hot/cold tolerance, and stomach, chest to neck the epidermis ice cold while the dermis boiling hot, swollen lymph non-tender lymph nodes and every could weeks recurring 99-100 fever. And if YOU were the victim of ANY loss of meds, for any reason, what would YOU do? Just knowing your illness and meds is now considered "drug seeking behavior," The instinct to preserve one's life, I personally think would take precedence until the experience became so unbearable that like the thousands of cases on record of suicide from decades long clonazepam use.
I have nothing but respect for nurses. When my younger brother died, and I was in the 4th grade, Mom would have me read the quizzes, tests etc to her, then watched her become better and better and I heard how many times people would come in with the same stories and "play acting" for drugs as I see still being discussed on this site, I am amazed at how these people all try the same old stories. I can understand how I would get angry at someone trying to "play me" for drugs and I can only have admiration for you guy's dilemma of DEA threats vs compassion because I've read from you how hard it is to have to turn legitimate patients away because of all the bull artists.
I only came back to say thank you for the seriously tough job you do, under nearly intolerable conditions, the information gathered here and goodbye. There isn't anyone to help, so I'm only trying to keep going because my Mom (who is in stage IV kidney failure, congestive heart failure and degenerative heart disease) doesn't deserve to watch her only child die because a pharmacist screwed up, making me take my meds out of the safe, then get my car broken into. After that, I don't care. It is too late for me, and even though I probably could find a medical professional to help, I will not put any of you in that kind of danger.
And the most ironic? The "pill mills" are still in full swing (organized crime has it down) and the current statistics show more diversion then ever before. My thinking is in the case of patients, if they lose or have meds stolen, urine, hair and blood testing right away can (now days) determine the expected amount of specific medication can even tell if you went without till the last few days then tried to say they were taken as directed, it could easily be proven or not. Since they don't use these methods at the time of reporting, and there is a big difference between the way (its even on the positive risk assessment tool) the poor are punished in ways horrible to think about, while those not disabled who aren't on low income they work with those patients who are affluent enough to afford private insurance.
Well, wrote too much, probably made no sense and now I have to try and get a half hour of sleep this week. Thanks for listening. And thanks for being there for us.
Mar 4, '15
I hope that things get sorted out for you.
My condolences on the poor health of your mother in addition to your own health challenges.
I pray that someday the US medical system will stop treating the majority of people with pain issues as if they are criminals.
Mar 13, '15
I think you ought to sue the pharmacist and whoever shoved the zero tolerance thing at you and your doctor who, although apologetic, let it happen.
Please seek psychiatric care, Vinny, and please don't harm yourself. I am praying for your Mom and for you to have pain relief, relief of the severe suffering you are enduring, and peace.
Can you write to your Senators and Congressmen? They need to know how our current US medical system causes such suffering. Keep it non-technical, no abbreviations, explain things in layman's terms, but please do it.
Mar 14, '15
I am sorry. Please continue your search for a decent doctor. There are a few out there. I am a fan of pharmacist Steve blogs -Steve Ariens. I am 58 with post laminectomy syndrome,peripheral neuropathy,interstitial,interstitial cystitis and sciatica. So many people with chronic painful diseases are treated as criminals instead of patients. It's unfair and Ken Mckin has a great utube clip about the loss of compassion. He has several others that are educational. I wish you the best care possible.