M is for Methadone

On and off, depending on the severity of my pain I have been taking a time-release narcotic in pill form.  It is a pill that is stronger than morphine and is given to me under the care of my primary physician.  I take it in two doses, a high dose three times a day and a smaller dose as needed for when my usual dose isn’t cutting it, or, for “breakthrough” pain.  It has no acetaminophen or ibuprofen so does not damage my stomach from long term use. I have had no side effects and I think it is one of the greatest pain drugs for people in chronic pain.

The problem?  Just my CO-PAY for my regular dosage for one month is over $400.  If I add in the smaller dose, which I do not always take, that runs me about an extra $250 per month.

Sure, these time-release opioids work great, but they are all new and there are no generic brands for them.  My wonderful pharmacist breaks my prescription up into amounts of $50 and now that we have Grant’s disability money, in amounts of $100.  You can read about a time when a pharmacist was not so nice to me about helping me with this enormous expense here.

No matter how you slice it, I am still paying about $650 per month out of pocket.  So, what do people do when when they can no longer afford their outrageously expensive meds?

They go on Methadone.

Yeah, you read right, that Methadone.  The legal drug they give to heroin addicts which works on them the way heroin works but is legal.  Methadone emerged in the 1950s as a primary treatment for opioid addiction and is still the primary therapy for it.

For people who use it for chronic pain it is given in a different way and can be very effective. It would cost me about $30 a month, instead of $650.

Yeah, but it’s Methadone.

Several months back I talked about going on Methadone.  My doctor said that if I could afford to keep paying for my current treatment, that he really liked the way it worked in conjunction with the rest of my medications.  I love it because I have never felt any side effects from it.  Grant and I talked it over back then and we decided it was important for me to stay on my drug.  Who wants to fool around trying to figure out the right dosage, and run the risk of possibly life-threatening side effects when you start on a new pain med?

But now is now, and I just can’t keep paying what I am paying to manage my pain.  My doctor said that at first he would start me off at a lower dosage to work my way up to the amount that is right for me. During this time I’m “not going to do well” because I will be taking roughly half of my usual pain medication to work my way up and I worry that I might end up in the hospital with mind-blowing pain.  I worry that I will be able to function even less than I usually do and I worry that my son might see me screaming in pain.

And of course, it’s Methadone.

Everyone knows what that drug is, everyone knows the primary reason people take the drug. My doctor did say that it is many patients’ experiences that their friends and family look at them differently when they find out they are taking Methadone for pain management.  That in their minds this confirms it, that their sick loved one is truly a drug addict.

Of course, I don’t have to tell anyone I am taking Methadone.  But maybe I should because that’s what I am all about; breaking down stereotypes and educating.  How many more friends can I lose anyway?  What do I care if a stranger knows I am taking Methadone?

All I know is, I cannot go on paying this outrageous amount of money every month.  I must make a decision soon, but I pretty much already know what that decision will be.

Yeah, but it’s Methadone. 

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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8 Responses to M is for Methadone

  1. I don’t know if I ever mentioned this before (my memory is not the sharpest!) but when I was doing my nursing clinicals, one of my patients was a woman with multiple connective tissue disorder. She was taking methadone. There is such a stigma about “drug seeking behavior” with people who take powerful narcotics, even among medical professionals. At least they’re finally starting to teach that if a person is in pain, they’re not looking for a high, they’re looking for pain relief, so stop treating them like they’re “bad.” Sometimes the way medical professionals treat people is extremely face-palm worthy.
    That copay is obscene. My brother’s ex wife has a $400 monthly copay for her RA meds. I really don’t know what they expect people to do.
    Faycin A Croud´s last blog post ..Teh Handy Capped: They Come in 2 Varieties

  2. Shannon says:

    You said it best yourself, “What do I care if a stranger knows I am taking Methadone?” You should NOT care. If people are that quick to jump to conclusions without listening to the facts then they are not worthy friends. Worse, any doctor who prevents access to necessary pain relief medication for a patient should be reported to the proper authorities and believe you me, were it me that had to deal with such a doctor, I`d be yowling about it to everyone and their dog. As public as I could make it, too. Social media can make things very awkward (for lack of another word) for any public or professional person and I know it.

    Your doctor seems to be willing enough to work with you. I`m SO glad that is the case. Mine is as well, something I am very grateful for.

    As for people`s seeming need to put labels on everything and anyone, well that`s nothing we can control is it? Stereotyping is everywhere. What we can control is how we deal with those negative thoughts and comments.

    I like how you are already coping. That is making a blog to write it all down in and sharing your experiences with us all. Stating that you think you should not keep the name or amount of drugs you need to be able to cope with your pain a secret from friends or family. Honesty is always best I’ve found. I say good for you! If they can’t or won’t be supportive, you don’t need their negative energy bringing you down!

    You could go yet another step, if you wanted. You could put your real name on things and start being more vocal in your geographical community. That is a step not many of us are willing to take, but it IS an option. Just knowing that, alone, is empowering in my opinion.

    You are not alone, not ever (we #spoonies are always online after all lol). But in order to change things for the better (in regards to your copay and how difficult it is to pay for the medication you need), you very well may need to take things public. Rally locals with chronic pain (and politicians) to your cause and start being very loud about it.

    Just saying 🙂
    Shannon´s last blog post ..FM Symptoms Tips

  3. mamasick says:

    Faye, that’s what’s so upsetting. Here is a drug for me that’s perfect yet it is unreachable if you are in poverty.

    Shannon, I am lucky I do have a doctor that trusts me and I do thank God for it. Makes me scared to move out of town! As for losing friends, I have lost a lot, this year especially. They can’t handle my declining health and they don’t understand and they are afraid they can catch something from me.

    The biggest reason I write under a pen name is bc my child was taken away from me 2.5 years ago by Child Services. It was a nightmare that scarred us all for life. Believe it or not, my son’s school knows I write a blog and they have asked me not to name names! I was shocked that my blog could be that powerful! During kindergarten registration in February I told the principal about my blog and I gave her the name. I think she reads it every day or something!

    I am definitely not afraid to speak in public about my illnesses and the things that go with them. More often than not most of them can relate and when they can’t I have always left them with something to think about. One of my dreams one day is being asked to speak as some of the more well known chronically ill bloggers do. They’ve got a few years of blogging ahead of me though!

  4. Dave Z. says:

    If the Methadone will help the pain at a lower cost, then my advice is to do it.

    Those who care about it don’t matter, and those who to whom it would matter don’t care. I don’t mean they don’t care about YOU, I mean that they won’t care about what you drug you need to help you, as long as it helps you.

    I would like to think that my opinion matters, and I want you to know that I don’t really care if you used Kryptonite, as long as it helps you not to be in chronic pain. What I care about is YOU.

  5. Mrs4444 says:

    What a tough decision. Odd, given how “simple” a decision it is. I wish you peace with it.
    Mrs4444´s last blog post ..Friday Fragments, Episode #171

  6. Tendai says:

    I wish you the best in this tough decision.

  7. T.M. says:

    I just had to make the exact same decision….I can’t work and my husband is out of work, meaning no benefits and no income….my pain doctor has been pushing me to try this drug, and because my other (opioid) pain meds were not meeting my needs (i.e. the screaming in pain in front of the kids), I gave in this week. Big mistake. I am still on one opioid med and taking the methadone for breakthrough pain….the first two and a half days it did NOTHING for my pain and then tonight, the one night I’m home alone with my kids, it all kicks in (my doc said the body stores it up until it’s at a certain amount). Not only was I out of it, I broke into hives (I think these may be partly psychological)…I’m fine now, but I will not be taking any more….the pharmacist told my husband to stay with me for the first six hours after I took the first dose in case I stopped breathing! I am at my wit’s end right now, I am so tired of being on all these meds, but if I don’t take them, I will literally go psychotic from the pain. Isn’t there something else for people like us? The doctors do like to drug us folks with chronic pain into a stupor, because we complain a lot less to them! I really believe these meds have shortened my life span even more than my MS has. I wish you all the best in your situation..I truly understand where you are coming from!

  8. SickMomma says:

    I don’t think it should matter what anyone other than you and your husband, but mostly, think about the methadone. Personally, my only hesitation in your shoes would be that I’ve heard stories from other bloggers who, when they saw a new doc and s/he saw they were on methadone, they said it became impossible to not be treated like a major drug addict. 🙁 OTOH, bad medical people treat anyone on any kind of pain meds like that. Sigh.

    Have you contacted the drug manufacturer to see if they have a program for people who need but can’t afford it? A lot of the really spendy drugs have programs like that. Mind you, it will probably still be outrageously expensive. But perhaps closer to within reach. Because truly, I agree that it’s horrible to know of a drug that helps immensely with no apparent side effects but not be able to afford to take it. It’s like putting food or water just out of reach of a starving person; it’s a form of torture!

    I wish you only the best!
    SickMomma´s last blog post ..Somewhat Random Links Worth Reading (IMHO)

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