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PostPosted: Fri Sep 11, 2009 12:26 pm 
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I wanted to relate a situation I am having right now to see if anyone else has had this experience! I am in Florida on vacation with my husband and 2 yr. old son (Disney World). We went to Animal Kingdom earlier this week and returned to our condo to take a nap prior to going out to dinner. I woke up 1 1/2 hours later totally unable to breathe! I have not been able to breath easily since. I'm having horrible wheezing, shortness of breath, unproductive cough, etc. My husband took me to the ER that first night and they gave me a nebulizer breathing treatment. They sent me home with a rescue inhaler (which had done zero good for me) and I ended up back in the ER and admitted to the hospital. They are in the process of trying to determine what exactly is going on.

The alarming part of all this is this: NO ONE I have encountered (nurses, ER physicians, admitting physician, respiratory therapists, etc.) know what Suboxone is!!!! They have asked me if it's an antibiotic. Mainly I've just gotten blank looks. What's really scary about this is that, without knowledge of the medication, they have no knowledge of possible interaction with other medications. They have been giving me multiple bronchial dilating medications, intravenous steroids, and, on more than one occasion, even though I clearly told them NO BENZOs, they have tried to give me valium, xanax and/or ativan. I did learn, from calling the Suboxone helpline, that steroids increase the effectiveness of Suboxone and so, while on them, the dose should be lowered. Of course, I'm having to guess about this, because none of the Drs. have any knowledge. I've got my dose by 1/3, but don't know if this is sufficient.

I've been told that if something should happen, and you are on Suboxone and end up in the ER needing emergency surgery or immediate pain relief, etc. that there is a medication they can give you that will "over ride" the Suboxone. I found some comfort in that, because on a medication like Suboxone, which we are likely to be on for a long period of time, it's quite possible that some event WILL occur that may make that necessary.

What I'm finding out now is this: That's great in theory - but doesn't seem to be the reality!! What would happen to someone who was not able to speak up for themselves or take part in their active treatment. Has anyone else had this experience?? I wrote Dr. Junig about it and he has stated that he is going to do a topic on this in the near future.

It's pretty scary, actually. And, of course, I still have no idea if all of the meds they are giving me are okay with Suboxone or causing me more problems than they are helping! I do know that my breathing is not improving at all.

I'd love to hear everyone's input on this as this is a serious topic that, for obvious reasons, concerns us all and our health!

Thanks!!


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PostPosted: Fri Sep 11, 2009 6:44 pm 
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Oh my that really is scary, I think your best bet would be to call your doctor who's prescribing the Suboxone to you. It blows my mind that no one, especially in the ER has encountered anyone on Suboxone. As far as the problem of being in an accident of some sort and not being able to tell medical personel what medications you're on I made a point of making sure that my family and my family doctor will be sure to speak up for me. I suppose there might be times when even they won't be able to speak up for me in which case I think having some way of notifying EMTs or whoever else is the first to respond of that you're taking buprenorphine. Dr Junig did a post awhile back about the option of wearing a bracelet like diabetics or others with a chronic disease so that there's less room for others to make mistakes in treating you. I think it's a great idea I personally managed to get a sticker to put on my drivers license that doesn't say I'm taking bupe but instead says I'm taking an opiate antagonist/blocking agent and my Suboxone Dr.s phone number. Whenever someone has to check my license when I write a check it can be embarassing but I think it'll be a small price to pay for correct treatment if an accident were to occur. I didn't used to think I would need any way of notifying medical personel until this last November when I was hit by a drunk drive who they think was going upwards of 120mph when he hit me. It totalled my car needless to say and I was fine except for some pretty bad whiplash the next day but the driver of the other car was killed and the other two passengers had to be lifelined. I'm not trying to live life in fear but it kind of showed me that we never really know when something like that could happen so I've found it to be a better idea to be prepared. Anywho I hope you start feeling better and that your Subdoc is able to help :)

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PostPosted: Fri Sep 11, 2009 7:19 pm 
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Wow! It sounds like you had a very scary and close call. Yes, it's quite disturbing to me that no one I've encountered is aware of the Sub! I did get a card to carry in my wallet and my husband is aware, of course. It just frightens me to think that even when made aware of the fact that I'm on Sub, they don't seem to know what to do with that knowledge! The agonist blocking opiate warning is a good idea! That would at least get them to ask some questions and dig a little, I would think!

Thanks for the reply and sharing your experience!


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PostPosted: Sat Sep 12, 2009 4:44 pm 
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Yeah I think it's best to describe Suboxone as an opiate antagonist if a doctor or medical proff asks what it is when you're telling them about what medications you're currently taking. I sure hope you don't have to go through that again and while I recognize doctors don't know everything but it's scary that they hadn't encoutered a relatively common medication like Suboxone.

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PostPosted: Sat Sep 12, 2009 7:02 pm 
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Very correct! Interestingly, I was admitted over 24 hours ago (this is the second hospital in a week, same results - no one in either is aware of Suboxone.) The pharmacist came into the ER to talk to me about my "home medications". She questioned me about the Suboxone and asked to see it. I showed it to her. She informed me that I had to send it home with my husband and they would provide it in-hospital. I did that. As of yet, I have not been given a dose of Suboxone. I explained to the nurse that this is not as "as needed" medication, but a medication taken on a specific schedule in order to keep a consistent level in the blood stream. This was about 8 hours ago. Still no dose.

She did tell me that the admitting physician ordered it and they are waiting for the pharmacy to "send it up" in order to give me a dose. Now, by this time, I've had my husband go ahead and bring me my daily dose. I'm thinking that I'm not really ever going to get a dose here. First of all, it is my understanding that only Drs. that are "certified" to prescribe Suboxone MAY prescribe it. I doubt they ER physician is Suboxone certified. There may be, however, and should be, an over-ride for hospitalizations, I would think. Surely people are admitted all the time who are on Suboxone. It is almost ALWAYS hospital policy that you don't take your "own" medication. This is for liability reasons. So, surely, there is not an expectation that, all of a sudden while you're in the hospital for however long that is, you don't need your Suboxone. It's such a complicated issue that doesn't really need to be.

Scarier than everything, though, is the fact that they just don't know what it is. I, again, had to stop a nurse from giving me i.v. Valium today. Scary, scary, scary.


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PostPosted: Sun Sep 13, 2009 12:51 am 
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Well from what I've read a Dr. can regardless of whether they're certified to prescribe Suboxone can administer opiates to to known opiate addicts including schedule II narcotics such as methadone. I'm not sure alot of ER doctors are comfortable doing such but it's my understanding that while they cannot legally prescribe an opiate to an opiate addict (only docs with DEA licenses can prescribe Suboxone) they can "administer" as in physically getting the medication and giving it to you directly if that makes any sense. I don't have first hand experience with this though so I'm not 100%. Did you have the doctor taking care of you get in touch with your Suboxone doc? That'd be the best suggestion I could think of atm. . The doctor taking care of you should have made sure you got your medication instead of letting you sit and wonder and worry about what might happen as I know for me there's nothing scarier than the thought of having to deal with withdrawal. Just try and keep in mind though that while most of us dose every 24hours we can still make it to around 3 days without getting into any real withdrawal or at least that's what I've heard from others

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PostPosted: Sun Sep 13, 2009 8:27 am 
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They actually finally brought me a dose last night at about 8:30 - about 30 hrs. after I was admitted. I wasn't worried about it, particularly, since I had my own and had just had my husband go ahead and bring me my dose yesterday around noon when it was apparent that I may not ever get it from the hospital.

Your suggestion about having the ER physician call my Sub Dr. back home is a good one. I had thought about that. The problem for me is that I go through a "clinic" (in the loosest sense of the word) and the physician who prescribes the Sub. has seen me only a few times, for a couple of minutes each time, in the last 1 1/2 years. That's another long, sordid story.

I have corresponded with Dr. Junig about this and was hoping to get in with him as a patient! He is at capacity right now, but my first goal when I get home is to find a new Sub doctor - one that knows what he's doing. This clinic has screwed me up so badly it's not even funny. That's another story for another time, though. I have, through research and speaking to people, managed to get myself on the right track and a good path with Sub, but that was all my doing. Beginning with determining a maintenance dose for myself when I knew nothing about Sub at the time. I know much, much more now and am learning more every day. At Dr. Junig's suggestion I took myself down 8 mg. this past week. I had been terrified to make that jump and it hasn't even affected me. Amazing what our minds can do to us. I had convinced myself that any drop over 2 mg. would be horrible. There's a LOT of misinformation out there - that's for sure. And every idea I had about Sub came from something I've read online. I'm finally learning how to sort the wheat from the chafe.


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PostPosted: Sun Sep 13, 2009 9:36 am 
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Rose, the situation you're in is indeed scary. I keep a list of my meds (& diagnoses) with my insurance card, but it's not "official" - just hand written. And after reading this thread I quizzed my husband to ensure he could explain it if necessary.

Regarding prescribing Suboxone - if it's prescribed for opiate addiction, they must have the special license/certification. However, if its use is off-label - like for pain - any doctor can prescribe it. When I started Sub. back in December, the addictionologist forgot to leave me a script for my discharge. All the docs and nurses panicked until they reached him by phone and learned they could write it w/o the special certification. I personally use Suboxone for both chronic pain and opiate addiction, so when we moved recently I had to take a crash course in who could or couldn't prescribe it. (Not that I'm advocating just any doctor using it long term without the necessary education.)

A question for Matt - Where did you get the sticker for your driver license? Any more info on that would be appreciated.

Take care, Rose and let us know how you are.

Melissa


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PostPosted: Mon Sep 14, 2009 9:15 pm 
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Melissa:

That is interesting about the "prescribing" guidelines. I did finally get my sub in the hospital, but the nurses would bring it to me in that little cup with water and stand there waiting for me to swallow it. I would explain to them that it is a sublingual med, and they just don't get it. It's been the weirdest experience.

I had earlier posted another topic concerning my horrible clinic. I have been trying, literally for a week, to get on of the two nurses on the phone to get him or her ask the prescribing doctor (the dr. who prescribes MY sub to me - who I see on rare occasion, by the way) to answer some questions concerning Suboxone and the other medications I am on. I have tried to talk to the drs. here about it, but again, they don't understand what Suboxone is and I'm not getting any information from them. It turns out that I have a severe case of pneumonia and had some kind of severe allergic asthmatic episode on top of it (this was a first for me - I've never had asthma in my life and I'm 44.) They were worried for a day or so that I may have blood clots on my lungs, so it's been kind of scary, but that has been ruled out.

The bottom line is, they have been pumping me full of intravenous steroids (solmedrol) and inhaled steroids, levalbuteral/atrovent, singulair, advair - all fairly strong steroids and bronchial dilators. Not to mention blood thinners because of the fear of blood clots on my lungs. I found out from the helpline at Sub that steroids increase the efficiency of the Sub and so the dose needs to be adjusted when on them. I just had to guess and lower my dose myself because, after a week of calling and leaving a message for one of the nurses at the clinic back home where I get my sub (explaining in great detail what's going on and the seriousness of the question) no one will call me back. Basically, my "clinic" has abandoned me in a great time of need.

The whole thing has been very scary. From hearing I had an abnormal CAT Scan of my lungs, possible blood clots, taking these fairly serious medications that I've never taken before, not knowing how they may interact with the Sub, and not being able to get any information from anyone, and trying to guess how much to lower my Sub dose by has been stressful. I think I've done okay, though. I was released from the hospital this afternoon. Breathing has much improved and I've cut my Sub dose by 1/3. I seem to be okay on it.

I, literally, have had to be my own physician with my Sub this last week, though. THAT is scary, given how little I know about it. I guess we all have to be prepared to do this. This has truly been a surreal experience.


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 Post subject: Glad you're home
PostPosted: Mon Sep 14, 2009 9:40 pm 
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Surreal is the right word! I'm glad the worst is over and you're back home. I've had pneumonia myself, though I wasn't hospitalized, so I know how really rotten it feels. Funny, I take two inhalers and use a topical steroid, and my doctor never mentioned anything. I'll have to add that to my list for my upcoming appointment.

You know you can use the locators online to find Sub doctors, right? I lucked out, mine is also my primary care (not withstanding the possible steroid issue) and I found him thru an online patient-doctor matching service.

Please stay in touch and let us know how you're doing.

Again, I'm so glad you're home - I'll bet you'll finally get a good night's sleep!

Melissa


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PostPosted: Mon Nov 02, 2009 1:00 am 
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I went to a doctor who's office dispenses suboxone. Well, the doctor there ask if I'm on any medications and I say "suboxone" and he says he never heard of it. I said "well your boss is licensed to prescribe it". Oh, by the way. It is a pain clinic to. Unfreaken believable.


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PostPosted: Thu Nov 19, 2009 11:53 pm 
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For those asking about cards to carry in your wallet, I picked up some Suboxone RB literature at my doc's office and it has a card that you can list your medications and it also has information for ER staff on how to treat pain problems for those on Bupe and it explains how the drug works and what it's for. Maybe you should ask your doctors office for something like this. It's from Reckitt Benckiser.


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PostPosted: Fri Feb 26, 2010 8:47 pm 
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<<We went to Animal Kingdom earlier this week and returned to our condo to take a nap prior to going out to dinner. I woke up 1 1/2 hours later totally unable to breathe! I have not been able to breath easily since. I'm having horrible wheezing, shortness of breath, unproductive cough, etc. My husband took me to the ER that first night and they gave me a nebulizer breathing treatment. They sent me home with a rescue inhaler (which had done zero good for me) and I ended up back in the ER and admitted to the hospital. They are in the process of trying to determine what exactly is going on.>>

I found this post to be very interesting as I too am having tremendous trouble breathing on Sub. The twist is, my husband and I went to Chattanooga TN (2 hours west of Nashville) for 3 days and I had NO trouble breathing. Makes NO sense!! My doctor keeps saying the breathing trouble "can't be" the Suboxone. Everyone is pushing for sleep apnea. I have no idea why I cant breathe in my own home (clean/smoke/allergy free) yet in a hotel 2 hours away I had NO problems. I have got to figure out what is going on! Thoughts anyone?


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PostPosted: Fri Feb 26, 2010 9:51 pm 
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Black mold anywhere?


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 Post subject: hey Jack
PostPosted: Fri Feb 26, 2010 9:56 pm 
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Hope I am 'replying' correctly....I just signed up for this mgs board and am not quite sure how it works. At any rate, no mold in the house, and my husband is fine. He's the one who is sensetive to EVERYTHING, even a small candle. The house is fine, and again this tarted the day I started Suboxone, which by the way, has also saved my life. I also take 200mgs of Seroquel for sleep, and 3 docs at Vanderbilt have all said that is fine since it's not a narcotic or benzo. I do so miss my Ambien. Just have to figure out what the deal is before I get talked into buying an 8 billion dollar sleep apnea machine that I don't need. Thank you for replying though...
Beth In Nashville


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PostPosted: Sat Feb 27, 2010 11:38 am 
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ive also had a similar experience where i broke my clavicle and the orthopedic i went to never heard of suboxone either, they were going to prescribe me hydrocodone for the pain, but i had to explain to him what it was and why i was taking it. I saw a post up there somewhere about the card everyone should carry it w them incase something was to ever happen.


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PostPosted: Sat Feb 27, 2010 12:50 pm 
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My doctor at one point told me you could get a bracelet too. I don't know where though.


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PostPosted: Sat Feb 27, 2010 2:03 pm 
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I got the card(s) from NAABT - they sent me an entire packet. I also got a medic alert bracelet. They can get a bit costly, so I got a nice one on Ebay, believe it or not. It clearly lists my name, diagnoses, that I take suboxone, and my allergy. I feel much more secure wearing it.

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PostPosted: Wed Mar 03, 2010 12:26 pm 
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Just signed up so I could relate my experience with this exact issue that I had just 2 weeks ago.

I was working on a PC for a relative of mine and everything was fine, I then got up to eat some lunch and that is the last I remember other than waking up in the ICU 3 days later......

Turned out I had a seizure, multiple actually. So my cousin called 911 and I was rushed to the ER. While there they where trying to control the seizures so they started giving me 4mg Ativan injections every 1/2 hour for a total of 12mg of Ativan. Now bear in mind this was after they where made aware of my being on Suboxone which none of them knew what it was and assumed after it was explained to them (very quickly) that it is used to treat opioid dependency, that I may have overdosed.

Now it this point I start having "Acute Respiratory Failure" and now I am barley breathing so they put me on a Ventilator. So some Genius doctor figures out what Suboxone is and decides to give me a 4mg IV Narcan Shot.....More seizures, throwing up, etc....Enter The Propofol infusions and Dilantin IV....So They put me under and thank god stop giving me Ativan and Narcan and get the seizures under control and I start breathing normally again. After 2 days under they stop the Propofol and I wake up.

My parents where told they very may well be taking home a heavily brain damaged son or I would be a complete vegetable, I am neither, thank god but I do suffer some damage from this. I cannot remember anything short term anymore for the most part it also turns out I have Epilepsy, but that is not from this.

I guess the moral of this is, is to make damn sure if you are on suboxone you carry something on your person at all times explaining exactly what Sub. is and what not to give you if you ever end up in a similar situation....My not doing that almost cost me my life at the hands of incompetent ER doctors and Nurses.


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PostPosted: Wed Mar 03, 2010 12:37 pm 
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Hi hpchris and welcome,

Thank you so much for sharing your experience with us. When you're ready, maybe you can do a post in Introductions and tell us more about you. I'm sure you'll find everyone here to be of great support - I know I do.

Please keep us posted and thanks again for adding your perspective.

Melissa

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