Methadone Users

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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bharrod
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Methadone Users

Post by bharrod »

Please register with this website and give your views and reviews of taking Methadone for Restless Legs Syndrome, please.
Thanks.

http://www.revolutionhealth.com/drugs-t ... s-syndrome

ViewsAskew
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Post by ViewsAskew »

Hey, I'm the first post in that thread :-).

This site is great; I'd forgotten about it. I think I entered every drug I ever tried in there.

I agree! I think everyone should post all of their experiences in there. It can only help someone else.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

bharrod
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Post by bharrod »

Yes, I am a all about helping others, but I do get a little OCD about stuff once I get my mind set on something...........as Zach and others have probably noticed. :-) LOL


ViewsAskew wrote:Hey, I'm the first post in that thread :-).

This site is great; I'd forgotten about it. I think I entered every drug I ever tried in there.

I agree! I think everyone should post all of their experiences in there. It can only help someone else.

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Helen518
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Dangerous?

Post by Helen518 »

Why is there so much on the web about how allegedly dangerous methadone is? There seem to be a lot of grass roots groups that believe "methadone kills" etc. Are most of these deaths are due to abuse?

Also, there are a lot of posts out there about methadone being hard to get off of, or taper. If someone wanted to take methadone temporarily, say a few months (while pregnant - it seems to be category B) would it be hard to get off?

I read that once you are on methadone during a pregnancy, they will not let you come off it, for fear of miscarriage. Then, the baby can be born addicted . . .

SquirmingSusan
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Post by SquirmingSusan »

Hi Helen. Yes, methadone can be a very dangerous drug. It suppresses breathing, so it has to be started at very low dosages. And people never completely accommodate to that, like with some of the other narcotic painkillers.

It becomes even more dangerous when combined with other drugs that suppress breathing - benzos, barbiturates, and especially alcohol. I sometimes take Ativan to help me sleep, and my pain doctor told me in no uncertain terms, "You do NOT drink alcohol." I drink very rarely anyway, so now I just don't. It's no big deal to me.

There is also a tiny risk of some kind of sudden cardiac death with methadone, but an EKG will tell if there's a problem.

I don't know how many of the methadone-related deaths are due to abuse, or abusing multiple drugs, or doctors prescribing too high of a starting dose to an opioid naiive patient. Or even having a couple doctors prescribing meds that both suppress breathing, with the other doctor not knowing about it. I remember being very frustrated with my pain doctor over how slowly he was raising my dose, but now I understand why they do that. And some people are just much more sensitive to medications than others.

All in all, though, methadone has been around for a long time, and has an excellent safety profile. Heck, I've been on something like 8 newer medications that have been recalled. I ask the doctors to please give me the older, cheaper drugs that have been around forever.

I have no clue about the withdrawal. It seems like most of the withdrawal horror stories are from people who were taking huge doses as a replacement for heroin. Our bodies do become dependent on it, though, to some extent so it's probably good to always taper off, even at the lower doses. I know one gal, a cancer patient, who was taking it for pain, and tapered off with no problems at all.

There have been a lot of mothers over the years who have taken methadone during pregnancy, most of them former heroin addicts who take high doses of methadone. I'm guessing a good search of the internet would bring all kinds of information about how that affects the baby, and how the baby is treated. It must not be a huge problem if the drug is rated class B.
Susan

bharrod
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Post by bharrod »

I am gettting off of Methadone and I used to be it's biggest advocate, it's too dangerous and it's taking a huge toll on my body and how I feel every day.
I feel like DOG sh**.
Mia

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Helen518
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Post by Helen518 »

Susan: thanks for your informational and thoughtful post. My doc has said that he would allow codein, oxycodone (percocet I think) or propoxyphene during pregnancy. I think that if we decide to move forward with a pregnancy that I would start with the codeine first and only move to something more powerful if necessary.

Mia: I'm sorry you are feeling so bad and that the methadone did not work out for you. Do you have any idea what you will try next? Would you be willing to share more details about why you are getting off methadone and what are the symptoms that make you feel so bad? I'm trying to learn as much as I can.

It is so frustrating when you try a med because it seems like everyone says it works so well for so many, then when you take it, you find out that you are in the minority for whom it has the opposite effect . . .

Neco
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Post by Neco »

I am sorry for your difficulties too Mia.

Methadone has saved my life as far as I am concerned, and this is something that a lot of addicts seems to say, especially Heroin addicts in particular.

Yes methadone can be dangerous to people who are opiate naive, and have little exposure to previous painkillers. Methadone is extremely powerful and dangerous to take with OTHER medications, but on its own, it is a very useful medication.

I don't know hard statistics about methadone related deaths, but I have read many reports about how in most cases, it was due to multiple drugs being in their system. As far as methadone maintanence goes (treatment for Heroin addiction) all the deaths reported in the study I read were due to one or more additional substances in the users system, either illicit or legal but still not something they should have had in the first place.

I really don't know much about mothers against methadone, but I have seen far too many posts from people associated with their group to take them very seriously. A lot of them are hateful and vindictive because they lost a loved one, and quite frankly their posts demonstrate people blinded by grief who will do and say anything. Calling addicts scum, insulting them in every way possible be it emotionally, religiously, slurring them.

They don't listen to reason from what I have been able to stand reading in the past. It's blind lunacy and kool-aid for everyone in their circle. If you don't agree with them, you just don't get it, you're probably some scum of the earth criminal addict who doesn't deserve to live.

I am a big supported of methadone, and I make no qualms about it. I understand that the drug is dangerous to new patients but I never try to hide that when I reccomend it. I don't believe it is a maricle drug to be put on a pedastool or anything like that. But without methadone I would likely not be here today. My addiction leaves me unable to control myself around opiates, and I NEED opiates to control my RLS.

If I could not receive opiates in some form, I would commit suicide, dead serious make no mistake about it. I cannot live with my RLS unmedicated, or insufficiently medicated. It is pure agony. So methadone works for me. It is NOT a cure for addiction, it is a replacement for drugs I would otherwise use. Whether its buying painkillers off the street, or turning to Heroin in much the same way.

Methadone allows many people to break their cycle of addiction by replacing the drug they are buying off the street and receiving a legal alternative, in a controlled setting, at a controlled dose.

It is true, a lot of addicts who taper down their dose and then try to stop methadone, even after tapering down to as little as 1mg find it very hard and brutal to quit. I won't pretend to know why, but because methadone is a very powerful opiate I can only guess that is the reason. It is possible that you could taper off methadone with lower strength opiates like Vicodin, but I'm not sure how common that is.

I won't pretend to be an expert about methadone, or methadone treatment for hard drug addiction. I'm just a 26 year old guy, trying to live with my RLS, who can't take other painkillers anymore because I am badly addicted to them.

I respect everyone elses decisions about what medications they take, so if Mia wants to stop taking it because she feels too different, then that is her choice to make. I don't feel like crap when I take methadone, but everyone is different, so we all have to find what works for us.

Yes it is true a mother who takes drugs during her pregnancy gives them to the baby as well. Your blood is your childs blood. And the baby will likely be born with methadone in their system; however like the info I posted before I will repeat, LOW doses of methadone are considered safe during pregnancy.. This is probably only 5 or 10mg. It may be higher, I don't know. But high doses of methadone are not reccomended.. Probably talking 50, 100, 150mg or more here. No RLS patient would ever be on such high doses of the medicine though..

The mean average dose for RLS patients seems to be between 10 - 25mgs (not an exact figure). Some need less, some need more, as with all medications. I don't want to preasure anyone into taking methadone that isn't comfortable with the idea.

If you doctor is willing to give you Codeine or Oxycodone then that is great! I agree start with the codeine, and if its not enough then the Oxycodone should most definitely handle your RLS.


Those who are concerned about methadone, might want to look up Suboxone. Here is the Wiki page.

http://en.wikipedia.org/wiki/Buprenorphine

It is a successfully used alternative to methadone, and some people prefer it and even say it is easier to come off of than methadone. It contains naloxone, an opiod antagonist which helps curve abuse since injecting the drug would faciliate immediate and severe withdraw. Its a good deterrent. But if you are taking other opiate medications and switch to it, unfortunately you have to beging to go through withdrawal before you can take it. It is competitive for the opiod receptors and if a drug is in your system (like heroin, methadone) it will knock the molecules off the receptor sending you into rapid and severe withdrawal instead of the opposite.. Pretty weird huh?

As you guys can tell Methadone is a very sensitive subject for me, and I am very passionate about it. It is a life saver, and has helped bring more stability to my life, and many other lives. It is unfortunate that methadone related deaths are such hot topics, and that people are scapegoating the drugs with ulterior motives because they can't accept that perhaps their family member or friend didn't something they shouldn't have.. Or their doctor made a mistake in the dose, or in prescribing it in the first place.

In the end this hurts the real people who have died from legitimate accidents. Their voices are drowned out in the storm of addicts and activists arguing with each other, and it is a very sad reality.

Mia, I'm sorry methadone made you feel so bad, you seemed to be doing so well for over a year on only 5mg? Are you certain it is the cause? I support your decision to find another treatment in any case, and perhaps you could ask about Suboxone/Subutex/Buprenorphine. If your doctor doesn't know what it is, just try to explain to him it is a "methadone alternative", that works much in the same way.

Everyone who reads this discussion should walk away with the lesson that knowing your drugs is important. Understand what you are taking, and WHY you are advocating for a specific medicine.

I know those of us who take methadone will continue to advocate its uses, but I know we all will look out for each other and reccomend the most diverse lists of options that we can.

Sorry this went on and on and on.. Guess the subject hit a nerve :?

Neco
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Post by Neco »

Just an additional post, so I could say this and not drown it out in my other writings..

Stay AWAY from propoxyphene, if people think Methadone is dangerous they should go read about THAT stuff..

Stick with Codeine and Oxycodone :) I'd reccomend just starting with the Oxycodone if you can, but you may have to work your way up to it if you have little opiate exposure.. My first time on Oxycodone, I thought I was dying from respiratory depression, I have to admit.

I had taken plenty of Vicodin up until that point, and I only took 2 pills (I don't remember the dose, I think they were 5mg each small round and brown??)

So, don't push your doc if he has agreed to those meds. Just let you know you wish to start with the weakest med possible at the lowest dose, and work your way up if you need to.

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Helen518
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Post by Helen518 »

Zach - I sure am sorry that the topic hit a nerve.

I for one appreciate your candid, thoughtful replies to my posts and other folks posts. I think your comments show maturity and wisdom. You have helped me by sharing.

I think you are right that we all have to find out what works for us. I am so glad that it works for you and saved your life.

I suspected as much about the anti-methadone groups, but wanted some other folks opinions besides my own.

After my first 2 months iwth 24/7 RLS I also wanted to die and began to think about how I would do it. I was 6 months pregnant at the time. I am grateful to the doctor who helped me and my baby when other doctors would not. My baby is a year old now and is healthy and wonderful and the light of my life. As I write this I am also getting emotional!

Hope you have a good weekend.

All the best,
Helen

Neco
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Post by Neco »

I'm glad you got the help you needed in time.. And also that my posts have helped you learn some crucial information about how to proceed.

Indeed, I am a very "candid" person.. Though I prefer to say I am blunt and to the point ;) I have received open support from other members here about sharing my personal experiences with drugs and addiction, and I have found that a lot of people appreciate my posts because I often provide information they weren't likely to get elsewhere without a lot of digging around and stuff. I'm practically a walking Physicians Desk Reference when it comes to most RLS medications 8)

Would you believe I am unusually quiet and shy outside the Internet? Heh, I just have a way with words and the anonymity brings down a lot of barriers for people.

Aiken
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Post by Aiken »

Zach wrote:Stay AWAY from propoxyphene, if people think Methadone is dangerous they should go read about THAT stuff..

I'm inclined to agree. While propxyphene was fine when I had very weak RLS, as time wore on and my RLS got worse, the increased doses I was taking were making me worried about my breathing, moreso than anything other than one initially-too-high dose of methadone. I've read, and believe, that the ratio of painkilling to central nervous system depression is very, very poor in propoxyphene.

If memory serves, this is the reason that propoxyphene is actually one of the drugs suggested for committing suicide.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Helen518
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Post by Helen518 »

Well, that is interesting about propoxyphene. He did say, "synthetic opiates LIKE propoxyphene." Maybe he wanted to say methadone, but didn't want to scare me. I guess I'll find out at my next office visit. In the mean time, I feel more informed.

THe reproductive endo was dead set agasinst the percocet or the propoxyphene when i talked to him. so it looks like it will be codeine if anything.

THANKS !!

Neco
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Post by Neco »

Well I don't know why someone could be for one opiate against another, as long as whatever you were prescribed was low in strength, and when comparing opiates you kept the overall strength-objective low..

ie.. if someone says 30 - 60mg Codeine is fine, then thats roughly 5 - 10mg hydrocodone, 1-2mgs oxycodone, 1-2mg methadone.

Thats not an exact conversion, just a rough estimate.. I don't like thos equi-analgesic charts as I don't find them to be too terribly accurate (but not wildly innacurate).

Do ask him what he meant by synthetic opiates LIKE propoxyphene, and I guess you could say.. "Well methadone is a synthetic and everything I've read says its safe for pregnancy". Of course if you haven't read that I suggest doing research and finding it yourself so you don't feel like you're a liar when you say that, lol.. And if you are comfortable using it and consider it an option, of course.

I'd probably try to get several opinions if I were you, if possible.. It's also important to distinguish why someone may be against particular drugs.. I could see Percocet being a problem because it contains tylenol, and if you are regularly taking 500 - 100mg of tylenol a day, while OK for you, it may not be OK for your baby..

But quite frankly, if there is an officially endorsed list out there that says Codeine, Oxycodone, Methadone - whatever is safe during pregnancy.. Print it out, point to the data on the sheet when you are seeing the doctor, and say "I want one of these. We can start with the weakest. My baby is important to me, but my RLS will be unbearable without proper treatment. I feel these are safe treatments to try and understand the small risk it COULD pose to my baby."

Something like that.. let him know you understand the risks and you have got to get one of these medications we've been discussing. Don't have to quote me exactly, just giving you an idea of how you need to voice things.. Put emphasis on the fact you understand any potential risks, and maybe throw in a little comprimise like coming off the meds if possible, in the last few weeks of your pregnancy.

Aiken
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Post by Aiken »

Zach wrote:and say "... My baby is important to me, but my RLS will be unbearable without proper treatment. ..."

Which itself has to be bad for the baby, since stress is bad for Mom's body, and what's bad for Mom's body is bad for the baby's (developing) body.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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