Methadone Saved My Mother - by Mary

Announcement:  New Federal Regulations Adopted -

Patient Mistreated at Hospital/Clinic - by R.P.

Dear Methadone Today - 3 Letters -

Manufacturer Fails to Ship Methadone -

Doctor's Column -

    Methadone & Mortality:  Higher Doses (over 75 mg) More Protective -

    Methadone & Prilosec -

    Methadone, Tegretol & Seizures -
 
 

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 I wanted to comment as a non-addict how great the methadone program can be.  On Christmas day this year, I lost one of the most important people to my heart:  my mother.  She died of an aneurism.

 When I was 11 years old, I lost her to heroin addiction.  My sister and I were both devastated.  At that time, I had always held on to a small hope that someday I might get her back.  I let her addiction rule how I felt about her.  I never contacted her.  I was lucky enough to see her in 1992.

 After I found out that she was gone last week. . . I learned that she was on a methadone program.  She was no longer “strung out.”  She had been saved a year ago and was a reborn Christian.  I wish so much that others with heroin addiction could use this program.  It is truly a disease. . . from which they cannot escape.

 My mother was only 41 years old, but at least I know for the last few years of her life, she was able to feel good about herself and find the Lord.  When I first found out she was gone, I was worried that she may not have been let into heaven, and now I KNOW SHE IS!  That has been a large help to me.

 Also since her passing, I have heard a lot of stereotyping about methadone--about how it is just another kind of drug.  I think having people with that sort of attitude is tragic.  Methadone played a big part in my mother being able to save her soul, and she enjoyed her last few years a lot.  It also has helped to comfort her loved ones.  Heroin is the real PROBLEM!

 One last comment I wanted to make was that for me, seeing my mom shoot up was like getting the wind knocked out of me, and then I heard that she had contracted Hepatitis C; I just couldn’t deal with it.  But when I found out that she was working a methadone program and was able to give herself a decent life, I cried because I was so happy.  She had money from an actual job.

 Is there a web site that would help me figure all this out?  I would like to know exactly how it works.

Editor’s Note:  We commend Mary for coming out and telling her story.  We need more methadone patients, as well as their friends and families, to tell the truth about methadone treatment and the lives it has transformed.  It is only then that the stigma surrounding methadone will be overcome.

 However, we must take exception to the idea that drug addiction is a moral failing.  We must abandon the paradoxical attitude that drug addiction is a disease, yet continuing to use drugs in an addictive manner is a sign of immorality.  Methadone treatment will not be fully accepted by the public until drug addiction ceases to be associated with immorality.

 Finally, to answer Mary’s question about informative web sites - DONT, the organization that prints this newsletter, has a web site (http://www.methadonetoday.org), as does ARM (http://www.arm-advocates.org) and NAMA (http://www.methadone.org).  An E-mail discussion list also exists (for instructions on joining this list).
 
 

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 The following story was told to me by a nice, sweet ex-heroin addict who has been on methadone for about two years now.  When she told me the story, I wanted to go to the hospital that she “admitted herself into.”

 She is eight months pregnant.  One morning when this ORDEAL started, she drank her take-home dose and threw it up because she could NOT hold ANYTHING down.  She DID NOT go directly to the hospital because she thought the nausea was due to her pregnancy (i.e., “morning sickness”).   Later on that day, after she felt a little better, she drank her next day/Wednesday take-home, but she also threw up that dose.

 When she called the clinic, she got an answering machine stating, “if this is a MEDICAL EMERGENCY, please go to the hospital and have the hospital doctor call the clinic for ANY problem regarding the clinic, etc.  ”She then admitted herself into the hospital because she left messages on the clinic’s answering machine, but no one returned these messages.  After waiting six hours, and almost in COMPLETE withdrawal, the doctor came back and told her that he “COULD NOT give her methadone because it was ILLEGAL to do so”?!

 She suffered out the night and went to the clinic the next morning to have the dosing nurse tell her the same thing.  She broke down crying and was so sick she could not even think!  They finally called the head nurse at the clinic, and she got one dose for that day.  But, the head nurse told her that “if she DID NOT have FULL, written documentation from the doctor who was in charge of her in the hospital stating that he did not give her ANY methadone, she WOULD NOT be DOSED for two days, and ALL her take-home privileges would be taken away if she were lying!”

 I felt so sorry for her that I wanted to help her out with some of my take homes, but I made a rule that I would NEVER play doctor to ANYONE!  She did LOSE her FULL take home “privileges.”  But, she is getting PROPER DOSING NOW!  After the whole thing, I asked God if there was “ANY HUMANITY left in the World?”  But this is just another average day at our clinic!
 
 

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 These regulations represent a serious change and are in many respects an improvement over the current regulations.  Methadone Today will report on details of these new regulations in future issues; the upcoming issue of Advocates for Recovery through Medicine’s newsletter, ARMed with facts, will provide comprehensive information on the regulations.  For information and analysis of the proposed regulations, also see the August 1999 and December 1999 issues of Methadone Today.

 Now the real work begins: patients and advocacy groups need to work with their states to abolish overly-restrictive requirements and not adopt stricter standards than the proposed federal regulations  (as with the current federal regulations, states can adopt stricter--but not looser--requirements than provided in the proposed federal regulations).

 Thus, methadone patient advocacy groups need your support now more than ever (i.e., volunteering time, writing state legislators, attending relevant public meetings or hearings, becoming a member, donating money, etc.).  We must remember that there are people who would like to put the brakes on anything that would make maintenance treatment better, more convenient, or more available (i.e., owners of “abstinence-based” treatment facilities, politicians wishing to score political points by opposing a treatment that is often viewed negatively by the general public, etc.).

 Furthermore, advocacy groups and patients need to convince methadone clinics to take advantage of some of the revised standards (i.e., providing greater than 6-day take-home supplies to eligible patients).  Often the worse rules are enacted, not by state or federal regulations, but by the clinics themselves.  Thus, given the prevailing attitudes and practices of many methadone clinics, the majority of methadone clinics may not utilize the revised standards without pressure from patients and advocacy groups.

 Nonetheless, this is a monumental step forward.  These regulations bring us closer to better treatment, particularly by allowing greater take-home supplies and permitting office-based treatment.

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Dear Methadone Today,

 I read your article today (UROD Story: The Lies and My Ordeal, October 2000)  and was pretty shocked!  I went through Dr. Gooberman’s so-called “miracle treatment”--UROD (Ultra Rapid Opiate Detox).  I was told that there would be slight discomfort after I woke up; well there was a lot more than slight discomfort.

 When I awoke from the anesthesia, I was vomiting, and the nurses were in a state of panic due to my choking and lack of oxygen.  On top of that, I was paralyzed--I couldn’t even move my feet or legs, and I was defecating on myself.

 My family, who were standing by in a state of panic, were told that everything was fine but in the same conversation were told that they had never had this happen before and that it was definitely not normal.  I had to stay six extra hours, as I wasn’t able to walk; after that they made me leave, as no one wanted me there any longer--even though I still could not walk.  So I had to leave via a wheelchair, and another patient’s family member had to help carry me from the wheelchair into the car.

 Needless to say, it was the most unsuccessful detox I had ever been through and by far more painful than doing it “cold turkey.”  One time I even had a naltrexone pellet implanted in my abdomen while doing 1½ grams of heroin a day, with no clean time at all, and was deathly sick for 48 hours.  But I would have rather done that than go through with Dr. Gooberman’s detox treatment had I known what Dr. Booberman’s little miracle cure was going to be like.  I pray that everyone takes this, along with the other major downfalls of the procedure [UROD], as “good advice.” - J. H.
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Dear Methadone Today,

 I just celebrated three years drug-free thanks to methadone maintenance.  The doctor who helped me at my clinic left because of their practices, and I have been told to prepare myself for having my dose lowered.

 I am finally stabilized at 375 mg.  The clinic management is very uncomfortable with my dose being that high.  My need for the dose has been established with several serum level peak and trough tests.

 My personal life has never been as good.  My marriage is better than at any time in twenty years.  I recently was given an excellent promotion with my supervisors and store owner in full knowledge of my methadone maintenance treatment.  I don't understand why my dose cannot be left alone.  - G.R.
 
 

Dear J.G.,

 We do not understand why your dose cannot be left alone either.  It is true that most methadone patients do not require this high of a dose; however, you are by no means the only patient who is on/requires such a dose.  You statements here and the serum level tests suggest that this is the right dose for you, and there is no reason your clinic should be “uncomfortable” with your dosage.

 With just about any other medication for just about any other disease, a patient would not have his/her medication dosage reduced simply because he/she is on a higher dose than the average patient with the same disease requires.  Keep in mind that methadone does not cause any sort of physiological damage to organs or anything else, unlike many well-known and well-accepted medications that can cause liver,  kidney, and/or other damage.  There is no medical reason why you should be forced or pressured to reduce your  dose.  On the other hand, reducing your dose may result in decreased quality of life or worse if it triggers a relapse to illicit opiate use.

 Your clinic is not alone in its irrational avoidance of providing above-average methadone doses.  A large number of methadone clinics have dose caps--and it’s a virtual guarantee that the cap is well below your current dose.  If you have any experience with other methadone clinics, I am sure you are aware that many clinics would be “uncomfortable” having a patient on half your current dose.

 You do not state where you live.  If there are other clinics in your area or if you’d be willing to drive further to remain on your current dose, try calling these clinics about transferring at your present dose.  You may need to talk to the clinic doctor to find out for sure whether they’d allow you to remain on your present dose, but at the least the initial staff person you talk to may be able to tell you if the clinic has an explicit dose cap.

 If you would be willing/able to transfer to another clinic, we advise that you look into it before your clinic forces you to decrease your dose--if this hasn’t happened already.  This will give you a bit of time to do research to find another clinic and if your treatment is partly or entirely being covered by insurance, to find out whether they’d cover the treatment at other clinics.

 If for whatever reason you cannot transfer to another clinic, gather as much ammunition as you can.  Look for literature stating that some patients need relatively high doses, that such dosing is appropriate given your methadone plasma level results, etc.

 An open-minded doctor just might be swayed by the right information.  The right information may include professional studies, articles by physicians in the MMT field, etc.  Keep in mind that only a doctor can alter your dose [with few exceptions], so it is the clinic doctor’s opinion that counts, not the other clinic staff.

 Finally, with the new accreditation system, clinics will no longer be able to go against best medical treatment just because  they are “uncomfortable.”   They will need to justify why you are not being properly dosed or risk losing their accreditation status.  For assistance with this, you may want to contact us at the e-mail or snail mail address at the bottom of page 4.

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Dear Methadone Today,

Dear John,

 With only the information provided in your letter, we cannot answer with certainty what caused this problem.  However, the timing of these problems appears to correspond with the failure of one manufacturer to ship their product in mid-to-late 2000 [see above article].  This most likely was the source of the problem.
 Methadone Today has printed articles about the different formulations of methadone in the past [See page 2 of the August 1999 Issue]  (*at this point, there is only one manufacturer and formulation of OrLAAM, so this is not an issue for  patients on OrLAAM).  To our knowledge, there has not been a study of differing responses to various formulations of methadone, but anecdotal evidence suggests that an individual may metabolize different formulations differently-- to the extent that some patients may need a dosage adjustment when changing formulations of methadone.
 Apparently, the additives (inactive ingredients) can affect metabolism of the medication or cause side effects due to allergy or sensitivity to said additives.  To clarify:  a given dose has the same amount of methadone no matter the formulation used--so, two patients on the same dosage of methadone, where one is receiving, for example, “cherry methadose” and the other is receiving “diskettes”, are both ingesting the exact same amount of methadone.
 Some patients notice a bigger difference than others between methadone formulations.  For some patients, a change in formulation may put them in serious withdrawal, despite remaining on the same dose.  For patients who only notice a mild difference, the issue will probably resolve itself after a period of adjustment.  For patients with more severe reactions to a change in methadone formulation, their dose may need to be increased or decreased, or in some cases, a change back to the original formulation [or to another formulation] may be the only satisfactory solution.
 Whatever the reason for these issues, we believe that patients should be given a choice of formulations if at all possible.  Most methadone clinics do not offer such a choice, though some are willing to change the formulation they use if enough patients complain.
 In closing, we would like to add that a change in formulation is by no means the only explanation for an apparent change in medication effect/potency.  Obviously, other prescription or over-the-counter medications  may alter the metabolism/effect of methadone.  Other factors, such as progression of a disease (most notably, Hepatitis C) or onset of menopause can seriously alter dosage needs.
 Finally, regarding the methadone itself, a change in effect could be caused by tampering by clinic staff or a simple mistake in dosage.  Though either of these possibilities are unlikely, we have heard a few cases of dosing nurses taking some of the methadone and diluting the remainder.
 

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 We received information that one of the two known current domestic manufacturers of bulk Methadone Hydrochloride was not able to ship their product to meet existing orders to one of the three manufacturers of finished Methadone Hydrochloride products.

 A meeting did convene in Washington on October 18, 2000, which included all Methadone Hydrochloride manufacturers (bulk and finished) and responsible Federal and State representatives. The following decisions were made during the course of the meeting:

1.  There will be no nationwide shortage of Methadone Hydrochloride product availability to any methadone treatment program in the United States.

2.  No product has been shipped to any methadone program that has not met the requirements of the Food and Drug Administration or the pharmaceutical industry standards.

3. The domestic manufacturer of bulk Methadone Hydrochloride has targeted mid-December as the date that their bulk methadone product will be available to their clients.

4. The other manufacturer of bulk Methadone Hydrochloride will be in position to offer bulk Methadone Product to different pharmaceutical companies.

5. Until the manufacturer of the Bulk resumes their production, one of the three remaining manufacturers committed to increase their production of Methadone Hydrochloride products, which will be shipped to customers as needed.
 

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