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 Post subject: Hello,new here
PostPosted: Sun Mar 21, 2010 9:21 pm 
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Thank you all for being here. Please don't think me rude, but I have a question. I have been on subutex for many years, and quite stable. I am a 39 year-old female. Over the last 9 months-year, it seems like something has changed. I've been sick with heart failure, pph, and diabetes for years, but it happened very gradually, so I barely noticed it, I just got used to feeling poorly, and finally my symptoms became so big, I got diagnosed, all at once. I have done all that my dr has asked me to do, I am compliant. But I am embarrassed. I feel like I am in mid-withdrawal, a lot of the time. So, I am wondering, is there a tolerance? Could my metabolism have changed, therefore could I be metabolizing the sub differently? This is very uncomfortable, and things have always gone so well, I am hesitant to approach my doctor, the addict in me doesn't want to talk to him about it. Any response would be very appreciated. Thank you!


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PostPosted: Sun Mar 21, 2010 11:27 pm 
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Hi Magnus and Welcome!

I don't think I can answer your specific question about tolerance over the years on subs. I will say I've never heard of it happening, but my experience is limited.

The reason I'm responding is because your story sounds familiar in a way. I'm 44 now, but a few years ago, around the time I turned 39 or 40, my body changed. It was like it started falling apart.

I'm not sure I understand you when you say you feel like you're in mid-withdrawal all the time. Maybe you feel poorly because of your illnesses and it has nothing to do with the subutex?

Maybe if you gave us some additional information that would help.

Oh, and no one thinks you're being rude. These kinds of questions are why the forum is here. :)

Looking forward to hearing from you again.

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PostPosted: Mon Mar 22, 2010 12:52 am 
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Thank you so much. You are so right. Subutex has been good to me, not to mention my loved ones.

I have mitral valve regurgitation, a stented coronary artery (think President Clinton), primary pulmonary hypertension, and insulin-dependant diabetes. I was on fen-phen in the 90's, for 6 months, and that is the cause of the heart-lung problems. However, I am determined to be well. My cardiologist told me to lose 50 pounds, so I did. I think my health problems are largely my own doing--apathy, laziness, depression (untreated).

I feel, almost all the time, like I am in withdrawal. Chilled to the bone, sneezing, diarrhea, (sorry!) that feeling of emptiness in your soul, heavy limbs, hard to sleep, that's enough negative for you to hear! I have cold turkey'd off oxycontin many times past, so this feeling is familiar.

Thank goodness for harm-reduction, my doctor is very good, I've been with him a long time. But, I am on 32 mg a day, have been for years, and I just don't want to ask him a question he may not have an answer for. I saw the youtube videos of the doctor who this site belongs to, and I thought if anyone would have heard of this, it'd be you all.

To be honest, your kindness in answering me is a relief, I have never met anyone else on this medication, it feels good not to be so alone! Thank you again! Rachel


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PostPosted: Mon Mar 22, 2010 7:28 am 
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I have not heard of anyone having withdrawal on 32mg after this long so this is definitely interesting. I don't have the answers for you. I think your problem is unique and it is very medically related. I am afraid you will have to talk to your doctor about it given all of the additional health problems you are having. 32mg is a lot and since sub has a ceiling effect I believe based on the dose alone you are beyond this dose as I believe it is somewhere around 16mg. You could google any one of your medical problems and you could see if they cause you to metabolize faster. Either way, you will want to talk with your doctor about it because either there is a metabolosm issue you need to get figured out whether at 32mg or at 12mg OR there are psychological conditions you need to work out OR you have genuine physical health problems that are mimicking typical withdrawal symptoms. To me...all of those things are what doctors are for.

The addict in me doesn't like talking to the doc either. This is a good growth opportunity here.

Cherie


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PostPosted: Mon Mar 22, 2010 10:06 am 
Hi Magnus. Welcome to the forum. We're always glad to have someone new and you've been on Subutex for a long time so I know you'll have a lot to add here.
I'm so sorry about all your medical problems. You have some serious issues to deal with. It's interesting you were on fen-phen.....I worked with a gal several years ago who got a huge check (I actually saw it!) as a result of the class-action lawsuit involving those drugs. She had undergone a valve replacement I believe. I didn't know her well and don't know really anything about the lawsuit, but I hope you've been compensated appropriately if in fact some of your health problems are due to those medications. Whatever the case, I'm sorry for your suffering. It sounds like you are doing everything in your power to deal with your health problems and I hope things improve for you.
As far as the symptoms you are having that are similar to withdrawal.....really interesting. I can't imagine that you could be in withdrawal at 32mg/day of Subutex. It is my understanding that we do not develop tolerance to buprenorphine even after years of use. With you having other serious health issues in place, I don't think you should just ignore these symptoms or chalk them up to withdrawal. There may be something else going on that is responsible for your symptoms.
I would imagine you have several different doctors. How has that worked out? Does your Sub doctor communicate with your other doctors or have you kind of kept the addiction/treatment issue separate from everything else? I would think it could get rather complex. I feel for you.....I have a hard enough time just dealing with my addiction and recovery issues without really having any underlying medical problems!
I wish I had more insight for you. Really the only thing I can offer is support and just to advise you to not ignore your symptoms. You don't deserve to feel poorly, especially when you're doing everything in your power to be compliant with your doctors' instructions, etc. Let us know what you find out. And please come back and tell us more about you and enjoy the support we have to offer each other here.


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 Post subject: Welcome
PostPosted: Mon Mar 22, 2010 5:30 pm 
Hi Magnus, I'm brand new here, too, and I just wanted to welcome you as everyone here so kindly welcomed me. I've only been on Sub for 5 months so I do not have a lot of insight into long term treatment with Sub. However, just from hearing your symptoms I'm wondering if you've been able to rule out other illnesses that you may be suffering from in addition to your chronic conditions. Being a Mom here in New England I'm aware that there are many viral illnesses emerging, in addition to swine flu, and in my area kids have been out of school for weeks at a time. Also, you mentionned your depression is untreated, which I'm sure you know can contribute to the emptiness, the heaviness, the insomnia, etc. I can identify with your aversion to doctors, but please keep at it, maybe begin treatment for depression, and don't settle until you get answers. You've been through a lot - and at 39 you've go a lot of life ahead to enjoy (clean!).
I wish you health and healing,
Lilly


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 Post subject: Thank you, everyone
PostPosted: Tue Mar 23, 2010 1:11 pm 
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I so appreciate every word that has been typed in response. I have resolved to talk with my doctor tomorrow at our regular appointment. I am feeling a bit down today--that's just true, but I know it will pass. I am looking forward to reporting back tomorrow, and letting you all know what happens. I've taken all of your words into account. See you tomorrow! Thank you again!


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PostPosted: Tue Mar 23, 2010 7:29 pm 
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Hi Magnus-Welcome to the forum. I have been on the suboxone program now 10 months with the last 3 months on subutex. I currently dose 8mg a day. I am curious if you are at 32mg per day I was wondering first how do you take your subutex and how many times a day and at what mg? Do you take it under your tongue and allow it to dissolve? I know that may seem like a stupid question I am just curious how different people take their med.............. and we have a select few that take subutex as opposed to suboxone so I am interested in anyone else's experiences. Also when you get a chance can you share with us your opiate history? Did you start at 32 mg? Anyway I hope your doctor's appointment goes well and you get some resolve to your issues. Good Luck.


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 Post subject: New to forum
PostPosted: Tue Mar 23, 2010 7:53 pm 
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Hi all, I am a recovering everything addict and have been on suboxone since may 2007. This medication changed my life and I am now happier then I have ever been. I also have tried methadone and it worked at first but then just became another means of getting high. I am so glad to have found you all because the few people I do tell about the suboxone have never heard of it and I really don't go into great detail because I work with some of these people and just prefer it that way.I found out about this med because I researched online. I live in a rural area and there were not any doc's around certified to prescribe it so I have to drive over 2 hourse one way but alas that is a small price to pay. So anyway glad to know ya'll are here.


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PostPosted: Tue Mar 23, 2010 8:34 pm 
Hello Brooke. Glad you found us! This forum has been a source of reliable information and sound advice, as well as a wonderful system of support for me. I hope you will find the same will be true for you.
I'm glad you have found recovery from your addictions. How interesting that you found out about Suboxone on the internet. You must have been really looking for help and ready for help to have done the research and taken the effort and expense to drive the two hours for treatment. I wish I had known about Suboxone way sooner than I did. Had I known what it could do for me, I would have probably been willing to drive 20 hours to get treatment with it!! It's a shame more people aren't aware of this option for opiate addiction. I know this drug could potentially be saving many more peoples' lives both literally and figuratively if it were more widely known about and more widely accepted as not only a detox med, but a life-long maintenance drug. I'm glad you found it and that you are doing so well with it.
When you have time....take a few more minutes to tell us more about you. I think if you'll participate with us here, you'll find many kindred spirits as I have. It is so nice to be able to talk (type) to people who have things in common with you. Even the people that love and support us the most can't quite understand this opiate addiction/Suboxone thing if they haven't experienced it for themselves! So....great to have you!


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PostPosted: Tue Mar 23, 2010 9:01 pm 
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Well I am in my thirties and am now on my way to becoming a nurse. I currently work at a hospital as a nurse tech and I always see people that were once in my shoes and suboxone is not something drs recommend much as far as I know. It saved my life and I know many others could benifit from it as well. I will post more when i have free time and would love to get to know everybody on here.


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 Post subject: Hi Again...
PostPosted: Wed Mar 24, 2010 1:08 am 
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I have to admit that I'm rather startled at how warm and cogent the responses in this thread have been. I sincerely thank you. The www can be a jungle sometimes, and I usually don't post on a forum til I've been around awhile, some forums can be weird and punitive about that! But oh well! Some of the most enlightened people on the planet have been opiate dependent/addicted. So I really shouldn't be startled by the kindness...

Anyway, in 1989 @ 19 years old, I had a migraine, maybe 2 weeks post-partum. I was so sick, and thought my head'd explode, so I was taken to the ER. The dr gave me a shot of some sort, and sent me home with a bottle of vicodin. Um, wow. It took me a few days to figure out that this was NOT my usual runner's natural-morphine. I just took notice of it, didn't act on it. When the pills ran out, I let it go. Obviously I tucked that into my long-term memory for later use!

FF to 1995, I developed a terrible case of TMJ. I was a single-mom. I had dental that would cover basics, like teeth-pulling, and dx, but not to actually fix anything. So, I ended up at the local health clinic for treatment of the pain, it was genuine. It began with darvocet, then progressed to vicodin, percocet, levo-dromoran, (sp?) ms-contin, then finally, oxycontin...the stuff that turned my skin green when it wasn't on board. This went on for 4-5 years. It was a relentless cycle. Many, many swear-offs, cold turkeys, 2 inpatients. I even got 7 months clean once--that hole in my soul that the wind was blowing through, just never would go away. I caved.

I overheard someone talking about this "horrible" place that gives people "pink juice", to free them from the cycle. Sign me up! Good-bye dr shopping, being blissful for half hour, chasing my tail, LYING all the time, suffering, etc. The word "methadone" actually scared me, it sounded dark to me. But anyway, I showed up early. The first thing I noticed was that they TALKED about it, openly! By about 8 AM, I felt the most stable I had in years. I was high for 3 days, but that wore off. More stability followed! I started showing up for life! I never intended to get off ORT, and never apologized. I knew it was best for me. It ended up being that 45-50mg was about right. Tho I'd been up to 90mg for a time.

Also, I switched from methadone to orlaam, until it was no longer available, then went back to methadone.

Sometime between 2002-2004, we moved from Los Angeles to Seattle. (I married somewhere in there...;) My husband had gotten hired by Microsoft, and they have kickass medical. NO copays! So, I looked at the $425/mo I was paying for methadone, and that there was a new treatment--free, I was terrified, but I said yes. I got really lucky because my new dr was a teaching psychiatrist, and took an interest in me. So I went down from 45mg of methadone to 5mg in a month, weird, I felt ok.

I started on subutex, and I was fine, in fact I felt better than I had in a long time, and was more alert. Even at low-doses of methadone, I nodded. I would tell my husband I was just "resting my eyes", which was partly true, because my eyes would feel really heavy! But when the dr transitioned me to suboxone--well I had side-effects, the normal ones, but it felt really harsh to me, so my dr suggested I go back to subutex, so I did. They say somewhere that if you give an addict a bottle of opiates, they'll take them to excess, and I tried that, once, but hah! Didn't work...;) So, over time, maybe 9 months, I ramped up to 32 mgs, thought nothing much about the dose, again, not planning to get off ORT, it saves my ass--sorry if I offend anyone! But I just want to be ok with that for now. I wish, at the time, I had been looking at the www or asking questions regarding the dose, because I feel now I am at "the last house on the block". I have had so much stability with subutex, and it's been such a gift to my loved ones. Subutex gives a a small euphoric feeling if I have missed a dose. And I am going thru some weird struggles with my body chemistry. I feel craving, on top of the withdrawal symptoms. This is new, and startles me a bit. At my last appointment, he asked me about my spiritual life, oo the blue, interesting, because I went thru a kundalini rising in February, which is undoubtedly the most life-changing event of my life, everything I know--ain't so, like Mark Twain (?) said. And he listened to me, was very interested in it. So, I don't know why I am so afraid to talk with him. It's shame, probably. I want to be a problem-free patient...fat chance! Anyway, I've gone on too long, but that's about as much as I remember! Thank you very much. I am trying to stay in a thriving, responsible mode. This is a great site!


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PostPosted: Wed Mar 24, 2010 7:43 am 
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You didn't go on too long at all and you told your story very well. I enjoyed reading it and we have a lot in common including the area in which we both reside, although I am about an hour away which in I5 terms is like being next door :-) I completely understand about wanting to be the "good patient". For me it is that voice in the back of my head that still tells me this addiction is my fault and is the result of my character flaws and not a disease. Oddly enough, it is also that voice telling me it is my fault that also tells me it is therefore MY responsibility to manage it by myself instead of allowing the doctor to do it. It is what keeps me quiet in the doctors office and smiling and saying I feel "fine".."nope! no cravings".."yep.going to therapy". Of course my last doctor was Awful!!!! My new doctor is AWESOME. She welcomes you to call or e-mail her any time and she has far fewer patients than those who take insurance so she can spend a lot more time with us. I like the e-mail because then the things I would have a hard time bringing up in person, I can bring up on the e-mail much easier and then she can further discuss it at the in person appointment. It eases my anxiety about bringing it up.

I had a very hard time when I decreased from 16mg to 12mg. I started on 24mg. Others have said it shouldn't cause a problem, but according to my new doctor, it could be difficult if you haven't hit the ceiling effect of the sub. I think with my metabolism my ceiling is at 16mg which is why from 24mg down to 16mg wasn't a problem but going to 12mg was. I went off sub for a couple of months and now I am at 8mg-12mg depending on pain and I am doing fine for the most part (that is another post).

Since you don't like being at the max dose, you may want to talk to your doc about going a few days without in order to get some of the build up out of your system. When I have done that, I can always go back to a smaller dose a lot easier. You may also want to talk about a slow taper, but based on what you are describing, it might actually be easier not to draw it out and just bite the bullet and do it all at once.

Another thing that has helped me on such a lower dose is Dr. Junig's recommendation that we only take it once per day. He posted about this last night to someone again. I had always been told by my doctor that I could take it 2-3 times per day. I must admit that is what got me to the higher dose to begin with kind of like you. I just worked my way up in a couple weeks time because of psychological cravings. This time around, the doc also told me I could take it more than once, which I was doing. But 2 days ago I started taking it all at once in the morning and following all of Dr. Junig's instructions for getting the max amount absorbed into my system and it has been easier. I think about it less and I think about my pain less. When I have uncomfortable feelings I don't think "oh I could just take my next dose now" and instead I automtically think about getting through it and I think about what might be causing the feelings and what I can do to work through them. It really works. It also helps me feel less dependent on the suboxone.

Thanks for sharing your story. It is always nicee to know who we are talking to and a little about their background. These people and this forum REALLY helped me through my stopping suboxone crisis and I felt so much less alone, was given the support I desperately needed, and support. They have given me a lot of strength. I hope everything works out when you talk to your doctor. Please keep us posted. Take care.

Cherie


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