Clinic Dosing Policies - Janet M.

My Clinic Nightmare - Anonymous

Congress Oks Prescription Buprenorphine - By Bill Piper, Drug Policy Foundation

Buprenorphine Trial - My Experience - Name withheld by request

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Doctor's Column  - September 2000, Vol. V, No. IX
   Report Tracks Patients of Ultra Rapid Opiate Detoxification (UROD) - by Dr. Andrew Byrne
 
 
 

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 I have been on five different clinics (actually, more like eight or nine if you count all the times I was on clinics and they changed hands AND THE RULES!).  At EVERY ONE of them, it was necessary to exaggerate or in some cases out and out lie to get a dose increase.  Although I did not ask for an increase while on a couple of these clinics, my fellow patients made it EXTREMELY clear how hard it is to get an adequate increase or, in many cases, any increase at all.  Based on information from the calyx list (a discussion list for methadone patients on the internet) and my own experiences, I believe that MOST clinics are very reluctant to raise patient dosages.

 I am preparing myself for a dosage battle with my clinic, as I am approaching 100 mg, and my clinic gives no take-home privileges to patients above 100 mg.  When I was asked to explain why I felt I needed a SUBSTANTIAL increase after being in treatment for so long, I told them that through recent research on my part, I discovered that many of the symptoms I’ve been experiencing would very likely be eliminated with a higher dose.  I told them that I never continually brought up my symptoms because until now, I believed that they were negative side-effects of the medication, and I thought that everyone on methadone had such symptoms (i.e.:  sweats  in the night and early morning, not being able to shower before dosing due to chills and cold sweats, etc.).  Mainly, I tried to convey the message that I just recently discovered that I should not be experiencing the ups and downs that I was experiencing on methadone--and that in fact, the medication should hold me a full 24-hour period.

 Of course it was necessary for me to go into a lot more detail with the clinic, but I am sure you get the idea.  In my case, I was telling the truth about not knowing that methadone patients are not SUPPOSED to be experiencing the beginnings of withdrawal on a daily basis, but I did have to exaggerate the severity of some symptoms.  However, I would suggest to others to tell their clinic whatever they want to hear in order for them to get an adequate dose.

Editor’s Note: This is by no means the first patient who has complained about inadequate clinic dosing practices, nor is this the first patient who felt the need to exaggerate symptoms in order to get a dose increase.  Considerable evidence from research and surveys indicates that:

1)  Although the proper dose varies considerably from patient to patient, outcomes are generally better with higher doses; and

2)  As a result of research and clinical experience, guidelines regarding dose have changed in recent years (doses which were once regarded as “high” [90-100 mg] are now considered to be about average, and some patients may need doses in excess of 200 mg and more.  Yet many clinics still adhere to the philosophy that “lower is better” when it comes to dosing--this is demonstrated by the fact that a significant number of clinics have “dose caps”.  Moreover, there are other clinics that do not have formal “dose caps” but still strongly resist doses above a certain level.  Research suggests that the consequences of under dosing are very serious.  Furthermore, concerns about overdosing are often misplaced:  patients are far more likely to underdose themselves than overdose.

 Clinics have a responsibility to provide quality treatment.  At a good clinic, a patient will not need to exaggerate symptoms to get an adequate dose or have to contend with arbitrary dose ceilings.  Finally, a good clinic will educate both staff and patients regarding dosing issues and what the patient should expect in terms of medication effects--many of these problems are a result of simple ignorance on the part of staff and patients.
 
 

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 I'm afraid of what tomorrow will bring.  After seeing my clinic and the methadone world for what they really are, I decided to leave and not go back.  For almost five years, I followed my clinic’s rules to the letter.  I put my family through hardships because I was spending money we didn't have on gas to drive 70 miles one way to the clinic, instead of buying food for my kids or something my wife wanted.

 When I first started going to the clinic they wanted me to find a pain doctor because I wasn't sleeping at night due to pain.  The methadone I was receiving in the morning was taking me through the day okay [without pain], but it didn't last through the night.  Since they couldn't give me more methadone to treat my pain*, they kept pushing me to see a pain doctor.

 There were several reasons I didn't want to go to a pain doctor.  The pain doctors I had been to before were all the same--they wanted me to either live with my pain or take NSAIDS, acupuncture, relaxing, bio feedback, etc... you name it, they said it.  Most of them called me a “junkie” right in my chart.  When I told them that because of my ulcer operations NSAIDS were out, they of course, assumed I was drug searching and labeled me [a drug seeking addict].  I didn't want to go through that again.  Not to mention the fact that now I was going to a methadone clinic, and once they found that out, they wouldn't touch me with a ten foot pole.

 But finally, after three years of being pressured by the clinic, I did look for a pain doctor.  The clinic recommended a pain doctor, but I told them that I would look for someone closer to me.  The clinic doctor there said that was “fine.”  Well, I lucked out and found a compassionate pain doctor who’s not afraid of giving people what they “need” to be pain free and live a normal life.  This doctor didn't shove me out the door or treat me as if I had leprosy or the plague as soon as I informed him of my history of drug abuse.  The methadone clinic seemed happy that I had found a suitable physician.

 At first this doctor put me on Oxycontin (to be taken at bedtime).  That didn’t work, so he switched to MS Contin.  Initially, MS Contin relieved my pain; but after a while, it didn’t work either.  Since I was already on a high dose [of MS Contin], I didn't think that increasing the dose would make much difference*.  Someone suggested that since my methadone dose [taken in the morning] took my pain away for most of the day, why not ask the pain doctor to try a small dose of methadone at bedtime.  So I asked the methadone clinic doctor whether there would be a problem with the pain doctor prescribing methadone [to be taken in addition to the maintenance dose dispensed by the clinic], and he responded that this would not be a problem, as long as the pain doctor was willing to do it.

 So I discussed this option with the pain doctor.  At this point, I had been going to him for more than six months, and I had never given him any reason to distrust me, so he was very receptive to the idea of giving me a dose of methadone to take at bedtime.  He wrote me a prescription for methadone--and it worked!  For about three months, I remained at the same dose, took my bottles in once a month when I got them filled, and not once did I have any problems.  Then came a day when the pain increased again at night, so he upped my dose by 20 mg.

 About a month later, my problems with the clinic started.  First they said, “Mike, we need to contact the State to make sure we're following all their rules and to make sure they know about this,” (I thought they had done that before I started getting methadone from the pain doctor).  Not long after that, they told me, “the State says you have to get your methadone from one place, so you have to decide where that’s going to be--the pain doctor or us?”

 But, according to them, I had a little time to make a decision.  I didn't know what to do; I was afraid of the idea of not going to the methadone clinic.  I had been going there for a long time; I guess, in a sense I’m hooked on that place too--the clinic had been a “way of life” for me for the last five years.

 On the other hand, I was having trouble affording the gasoline it took to commute to the clinic.  It would also be nice to not have to worry about going to the methadone clinic.

 I wasn't sure what I wanted to do--then on Thursday, the decision was made for me in a sense when I went into the methadone clinic and was pulled into my counselor's office (before I could dose). As I sat down, I knew something was wrong--my counselor said to me, "you have to decide today. If you keep getting methadone from the pain doctor, you have to start coming here every day.  Even if you get a different medication from him, you’ll still have to come every day until you are weaned off your dose for pain AND after your doctor faxes a letter stating that he will not dispense methadone to you anymore.”

 Since I had already tried the other pain medications and none of them had worked, my counselor wasn't giving me much of a choice.  I told her, "Fine,  I'll get all my methadone from the pain doctor.”  She then said that she'd call the pain doctor right away and see if I could get started with him the following day because the State didn't want me taking home any more methadone from the clinic.  My counselor called him and according to her, he said  that, “yes,” at that time, he was willing to prescribe all my methadone beginning on the following day, BUT that he had been contacted by the DEA, and he hadn't been able to call them back to see what they wanted.  The doctor told my counselor that he was a little nervous.

 About a half hour after that conversation with her, she called me back and said, “Mike, I'm sorry. . . the pain doctor is no longer willing to give you all your methadone.  That call from the DEA was about you, and they scared him into not doing it.  You'll have to come here every day."   I told her that I couldn't do that, and besides I had followed all the rules and had done nothing wrong!  She agreed but said that there was nothing she could do:  "it was the State, and the clinic had to do what they were told.”  I slammed the phone down on her, went in my bedroom, and cried my damn head off.

 I later found out from my pain doctor that the call from the DEA wasn't about me, and no one told my counselor that it was.  I came to find out that my pain doctor had gotten three other patients from the methadone clinic and has been doing the same thing with them.  I think this is what it’s all about.  I think my pain doctor has become a threat to the clinic by taking patients away from them.

 These other patients he has been prescribing to haven't been going to the clinic as long as I have, and one of them has been suspected of diversion.  The call from the DEA was about that person, not about me.  I also found out today that the State never told my clinic that if I were going to get methadone from my pain doctor, then I would have to come into the clinic every day.  The State Methadone Director told my pain doctor that if I went back into the program, I could go back to once a week.  Furthermore, contrary to what my counselor told me, the State Methadone Director also told him that there was nothing wrong with him giving me Methadone for pain control.

Editor’s Note:  Unfortunately, the author’s methadone clinic managed to intimidate his pain doctor to the extent that the doctor was no longer willing to prescribe his entire dose.  However, he was able to find a methadone clinic in Chicago (CAP) that is willing to give him his entire dose [for maintenance and pain], while permitting take-homes.

 Methadone maintained patients with chronic pain issues commonly experience such hardships.  From a legal standpoint--at least at the federal level--the prescription of methadone for the purpose of pain management is subject to the same regulations as any other narcotic pain medication.  The federal regulations referred to in other Methadone Today articles only cover the use of methadone in the treatment of opiate addiction.  They do not prevent a physician that is not connected to a methadone clinic from prescribing methadone for pain management purposes--even if the patient happens to be a methadone maintenance patient.

 The federal regulations do not specifically address the issue of whether a patient prescribed methadone for both the treatment of chronic pain and opiate addiction may obtain his/her entire methadone dose from a doctor that is not connected to a licensed narcotic treatment program.  In other words, if methadone is being prescribed for both purposes, does it fall under the regulations or not?

 From talking to both patient and doctors, our experience is that methadone patients who are being prescribed methadone for the treatment of chronic pain and opiate addiction may get their entire methadone dose from a pain doctor or GP that is not connected to a licensed narcotic treatment program.  In such cases, doctors are not in violation of federal law as long as the patient has a legitimate pain issue.
 
 

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 In July, the U.S. House of Representatives overwhelmingly approved legislation that would, for the first time since the passage of the Harrison Narcotics Act of 1914, allow general practitioners to maintain an opiate-dependent patient on a narcotic, in this case a Schedule IV or V anti-addiction drug.  The legislation, H.R. 2634, was approved 412 - 1, with only Rep. Mark Sanford (R-SC) voting against the measure.

 The sponsor of the bill, Rep. Tom Bliley (R-VA), is particularly interested in allowing physicians to prescribe buprenorphine, a Schedule V drug developed to treat heroin addiction by suppressing craving for the drug; but the legislation would allow doctors to prescribe any Schedule IV and V drugs approved by the FDA for use in drug maintenance or detoxification.  In order to prescribe such drugs, doctors would have to be licensed under state law, have the training and experience to treat drug addicts, and have the capacity to refer patients to counseling and other ancillary services.  In addition, they could not treat more than 20 people in an office setting at once unless the Secretary of Health and Human Services changed the guidelines.

 Senator Orin Hatch (R-UT) introduced a similar bill, S. 324, in the Senate last year.  The language of that bill was incorporated in S. 486, the Methamphetamine Anti-Proliferation Act of 1999, which passed the Senate earlier this year.  Since the buprenorphine provisions passed the Senate as part of S. 486, the Senate will not consider stand-alone buprenorphine legislation, such as S. 324.  The House Judiciary Committee, however, recently approved the House version of the Methamphetamine Anti-Proliferation Act, H.R. 2987, and that bill also contains the buprenorphine legislation.  The full House is expected to approve H.R. 2987 some time in September, after which time House and Senate members will then reconcile differences between each bill and produce a final bill that is acceptable to both houses.  The final bill is expected to still contain provisions allowing doctors to prescribe Schedule IV and V anti-addiction drugs like buprenorphine.
 
 

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 To those readers who obtain copies of Methadone Today from their clinics--please realize that subscribers are in effect paying for the newsletters you obtain, as most clinics do not pay a subscription fee for the newsletters we provide.  If you have been picking up Methadone Today from your clinic, please consider purchasing a subscription; by doing so, you will allow us to continue to print Methadone Today, which educates patients as well as clinic staff and advocates for patients’ rights.  Subscribing also benefits you, as each issue will be mailed directly to you at the beginning of the month, and you don’t have to worry about your clinic running out.

 To present subscribers:  we sincerely apologize that we cannot print as many issues as previously stated.  If you would like an adjustment to your subscription (issues added on), please contact us at the address below--to receive such an adjustment, you must contact us by September 30, 2000.  If you do not ask for this adjustment, we will be able to continue publishing just that much longer.  We are truly sorry that our faithful subscribers must bear the burden for those who continue to read the newsletter but feel they have no responsibility to pay for it.

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    We have been making personalized, laminated Medical Alert cards for methadone patients to carry in their wallets.  On one side of the card, it contains your name, your clinic's name, and your clinic's phone number.  On the other side, there is a list of antagonists that should not be given to you as a methadone patient.   It also warns that use of these medications will cause a syndrome that will necessitate immediate hospitalization. The card will help you in case you are unable to tell medical personnel what medications are contraindicated while you are taking methadone.

   For a personalized, laminated methadone MEDICAL ALERT card, send your name, clinic's name, clinic's phone number,& self-addressed, stamped envelope [SASE] - cannot be processed without preceding - $3 with any order (subscription to Methadone Today or DONT membership), $5 without order.

Name                                                                                                                           Phone:

Address                                                                                                                        Fax:

City/State/Zip

E-mail Address
 

 Info For Medical Alert Card:

Clinic Phone

Note:  Do a Print Preview (usually from the File Menu on your browser), and you can find out what page you should print so that you can just print this form and not the whole file.

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 Unfortunately my experience with the buprenorphine trial was not good.

 I volunteered to be part of a research project in the hope of getting off of methadone.  I have been on and off methadone since the mid 1970's.  The last four years, I have been stable and have not used any smack.  My dose was 25mg when I enrolled in the trial.  I am a professional with a good, responsible job and a very stable family life (wife and three kids--they all know about my "problem"; my wife has never used drugs.)  To be accepted in the trial, methadone patients must be on a dose of 30 mg or less.

I was actually the first subject here in Western Australia.  The trial here is "double blind" [*see description below], and you have to go through several medicals and interview/counseling sessions first.

 Day one:  Everybody gets the same--that is, 4mg buprenorphine under the tongue.  *A randomisation (sic) consultancy firm then puts you into the buprenorphine or methadone group; you do not know which group you are in and neither does any of the clinic staff.

 Day two:  You get both buprenorphine and your original dose of methadone.  But one is a dummy (placebo).  This continues for the duration of the trial with weekly or two weekly reductions until you reach 0 mg at a maximum of 20 weeks.

 My experience with buprenorphine was bad, but I don't want to discourage others because I have heard from people in Melbourne for whom it worked well and they felt great.

 For me, on day one, by 11:00 a.m., I was beginning to feel mild withdrawals, and by the afternoon, I was pretty sick so I went back to the clinic and was given clonodine, maxalon etc... "symptomatic medication".  The support staff were great; I had very professional care.

 Day two, much the same; I couldn't concentrate, was irritable... the usual.  Working was impossible.  I thought it would get better, so I hung in there for a week, but it didn't get any better.  Day six (Sunday), I went out and scored some smack for the first time in four years.  I didn't get stoned (only $50 worth) but immediately felt "normal" and well--my appetite was back, I played football with my sons... great relief.  So the next morning (Monday), I withdrew from the trial and increased my methadone dose to 35 mg, then 40 mg yesterday.  I feel well again now and will do a slow detox from methadone when I feel confident again.

 I think buprenorphine was just not for me (if I was even on it, I won't know for awhile).  I tend to be sensitive to some drugs:  I'm very allergic to aspirin and a little to paracetamol.  If I wasn't on buprenorphine, then maybe the one dose was enough to spin me out for a week.
 

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