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PostPosted: Fri Oct 22, 2010 1:59 pm 
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Hi All,

I am finally Home after three (Yep, I went back Again) back-to-back hospitalizations with this very severe and acute deep-vein thrombosis that caused me to experience what even the doctors termed "intractable paint". There was no detectable venous return in my leg, which had literally swollen to twice normal size. Because the clot was in my vena cava and wrapped around my clot filter, it was life threatening, and I was throwing clots regularly into my pulmonary arteries. I was in intensive care. My leg was inoperable, and the doctors could not even get a vein to give me thrombolytics (clot-busting) drugs.

Doctors showed me every measre of mercy the could. Under close respiratory monitoring, they tried again, and again to give me pain med reflief. As I said in my first post, the freqent dilaudid just wasn't helping. This second inpatient, and third time, they tried throwing large doses of PO pain meds in between the injections, and still I was suffering. Like I said, only the benzos were keepong me from going crazy.

I was under the impression that after near 8 days inpatient & off sub that I'd finally be receptive to these pain meds, that the Sub woud have "let-go", but that simply wasn't the issue. My receptors, I'm sure, were wide open, but I apparently had the tolerance of an elephant. I can very much relate to another post about having ceased sub four days prior to surgery and still suffered terribly. IMHO sub is a life-saver, but it has done a number on me when it came to an emergent medical need for analgesia- sadly I have to agree with the other memeber, I think only general anesthesia and a secured airway would have given relief.

The pain Dr. was reluctant to put me on a pca pump, but he said he was gonna dose me just as much as he could without sending me into respiratory depression. First it it was 2mg dilaudid every 2hrs with PO perc, then he dropped the POs and pushed me up to 2 mg every hour- a ridiculous amount.

I came to realize that my refractory condition had nothing to do with elimination of the sub and everything to do with the enourmous tolerance that sub apparently caused me to develop- another testament to just how powerful an opioiod is. It's so easy to misperceive that since is doesn't make me "high" and in a relative quantity sense, I take so little......in my case 1/4 of a tiny pill.

So this, I've learned is a serious risk that I choose to take by taking bup and being a medical patient. In the case on an emergency, I can only present my card, perhaps beg to be intubated- I called the emergency physician line myself today and that's what they said would be reccomended if I were in a bad accident, etc. When I saw my pcp today I made very clear with him to please consult anethesia should this happen .


Also......post discharge- An experience that might be helpful to others.....more testimony on how powerful bup is

My pain doc sent me home with norco 10 up to 8x/ day and said that should be more than fine when I expressed concerns about my sub and withdrawal. Well, it wasn't even close. I experienced all of the symptoms that I've come to know as bup withdrawal- the non-physical, very psychiatric ones- high anxiety& agitation, terrible insomnia& rls...everything I've experienced during my two attempts to jump from sub. I got extremely lucky today & my pcp was kind enough to induce me on just 2mg and it all went
away. Yes, I'm in excrutiating pain, but it's far, far better that sub w/d from 4 mg+ hospital meds....I don't know how much and what variety of PO opiate is required to keep a (this) Sub patient out of withdrawals, but I suspect it would have to be something 1) Very Long Acting and 2) Much More Potent. This also is tricky, because many docs may not want to Rx Oxycontin or Opana ER or other long-acting synthetic opiate to an addict, pain or not. Quite a quandry.

If anything I can suggest to possible prevent someone else from going through what I did, it would be to make a specific visit to your primary care doctor to dicscuss in detail how he will handle it if you (god forbid) arrive in the ER in a car wreck one day.
That's basically what I did today (and wish I'd done before). He now knows that painkillers are unlikely to work and has said that he will call anethesia & encourage sedation. (TG!!!). I also ordered a Big medic ID necklace.

I'm sure that most of you are far healthier than I am....and like I said, I may have been dead many time over from an overdose were it not for sub. That stuff they day about having a plan is no joke :)


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PostPosted: Fri Oct 22, 2010 3:19 pm 
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Thankyou for shareing your story an sorry to hear it was such hell to go threw.

But i got to say you answered so many questions that were always in the back of my head about what to do if i ened up in the er with serious pain. cause i never knew what would be the right direction to go while being on sub to try an get pain to lessen. cause ive read even the most powerfulll of painkillers can not break threw the sub no matter how strong or how long it just cant beat the sub. in a sense its scary to think about cause nobody wants to go threw what you explained an you would think they would of called your dr at this point if nothing was working. an it seems what your dr told you is the best route cause why try to feed us all those meds if its not working in the first place. seadation is the only way it seems!


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PostPosted: Fri Oct 22, 2010 5:32 pm 
Someone recently posted that they were in a research study in which they used fentanyl to "rip" the bupe off the receptors so they could go on low dose naltrexone (sp?). I wonder if fentanyl should be the drug of choice for Sub patients in serious pain (as it's also 100x stronger than morphine). On the other hand, I seem to remember someone having a biopsy w/ fentanyl and it not working. Any opinions on this?


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PostPosted: Fri Oct 22, 2010 5:33 pm 
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Junkie,

I'm sorry your not feeling well, that really suck! :oops: How much sub do you take daily and for how long?? I was just wondering because as some of you know I have relapsed twice during my 7 months on suboxone and each time I felt my 1st pill, maybe not as much as before but enough to get the "high's" and the "lows". I was on 10mgs the 1st time and went 24 hours w/out anything before my 1st oxy and the 2nd time I was on 6mgs and only went 18 hours before my 1st oxy. It makes me wonder why and how were all so different when it comes to suboxone.

Anyway, I really hope you feel better soon!! :D Good luck!! 8)


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PostPosted: Fri Oct 22, 2010 7:20 pm 
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Junkie, Runner, ah, whatever, I know it's one of you guys. LOL


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PostPosted: Fri Oct 22, 2010 8:10 pm 
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This scares the out of me, and makes me want to ween myself off this crap. I have a abscessed tooth right now and it's just wonderfuckingducky to know that no matter what I'm going to be in excruciating pain until the infection goes away. Juuuust lovely. No offense, and pardon my moderate cursing, I know this stuff helps people but that what if scenario scares the shit out of me. What should I do increase my stupid sub? Not that anyone ever responds to my comments anyhow. :/


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PostPosted: Sat Oct 23, 2010 1:32 am 
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First and foremost you need to get some Amoxicillin or penicillin or some sort of antibiotic. That is pretty much the only way you'll feel better. The good thing is, typically within about 36 hours of starting the antibiotic; you will start to feel a lot better. It generally is that fast. The bad news, as you already know, is opiate pain meds are not going to work. If you have enough extra Suboxone, you can try 4-8 mg every six hours for pain. This might help you out - it might not. Certainly if taking extra will make you run out early, that's not a good idea. However, some people report a moderate level of pain relief from taking Suboxone. It won't last much longer than six hours though (if that long) so you have to take it more frequently. What may actually work better for you is good ole ibuprophrine. It really helps with the swelling and inflammation. The key here is to take 600 to 800 mg of it. 400 mg is generally not enough. If that doesn't work, and you are in huge pain, a shot of Toradol will likely help. The downside here is you'll need to get into some sort of medical facility to get an injection. While Toradol does come in pill form, it is generally not nearly as effective as a shot or IV dose is. Your last hope would be again in a clinical setting trying Fentanyl. Not patches, but either a shot, IV dose or the Fentanyl lollipops that are available. I have only been told that this will work - I have never tried it or know of anyone who has. My doctor tells me that Fentanyl is able to push past the Suboxone better than any other opiate out there.

Why do I know so much about this? Two reasons, I have been involved in healthcare for nearly 25 years and I will be having my wisdom teeth out in the near future and everything I told you is what my Sub doc and I have discussed. My plan is:

1. Take 4-8 mg Suboxone q6 hours
2. Take 800 mg Ibuprophrine q6 hours
3. Get a script and give myself an IM injection of Toradol (you likely can't do this and will have to go in)
4. Get a script for IR Fentanyl sticks
5. Scream, and just try to bear it

It really does suck, but Suboxone makes pain relief a huge challange. It is the price we have to pay for the otherwise pretty awesome job that Suboxone does saving our lives.

Hope that helps. And see, someone does respond to your comments anyhow. :)


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 Post subject: Down side of sub
PostPosted: Sat Oct 23, 2010 12:23 pm 
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Hi again all......

First off, I have to admit that my worst fear in is probably sub withdrawal or forced discontinuation, rather than a pain emergency- mostly because I've been through it twice. Not just the acute (very psychological) part, but the incredible emptiness that it left behind- (PAWS)-that gaping hole where the drug was. On the positive as long as I have sub, zero cravings, sleep is great and my bipolar condition is super-well managed as a side-benefit. In another post I mentioned that most every Medicare provider has removed bup from coverage for 2011-nightmare. A few have kept it,only with pre-authorization. Anyone else on medicare?

Of course I always worry (obsess would be a better word) that the doc might make me stop, that he might die, or I might get a flat tire on the way to the appt...the whole deal...we all have to live with that...a physical dependency on sub....and yes I've hoarded my sub by going a couple doses here and there without in case of such emergencies (I don't think I'm alone here??). Plus it's easy to arrive at the pharmacy to hear "we are out of this medication, you will have to wait three days....." Anyone else spend their day worrying about their next sub refill ???? It is hard to live knowing you will get very sick if you lose your medication....

On Fentanyl, I used to give it as a medic and got it in this hospitalization during a procedure. True it is the most potent IV agonist, often given pre-op with the sedative Versed, but is extremely short-acting. Dunno if it did or did not make a diff for me.
There are a lot of options for pain...early on sub (my first 30 days), I was easily switched to full agonists. Over time that's changed.
Docs have lots of options though. IV toradol, many POs like Voltaren, etc, topical/ injectable lidocaine, nerve blocks, conscious sedation, and finally sedation, induced paralysis & intubation. So even after what I went throught, it's really not worth worrying about so long as my emergency info is in-line. Also I know how important it is to get to the Dr. with any medical problem before it turns more serious.

Oy yea....my dose is Generic Bup 4mg. Recently switched from Suboxone 8mg, found Subutex to be WWWaaaayyyy more potent!-Why, I don't know. Had to cut dose in 1/2 - What is your dose? , and how little can you get by on ? I can "survive" on ~2-3mg,
I've been on for just over two months now.


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PostPosted: Sun Oct 24, 2010 12:50 am 
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I agree. For the most part sub has been amazing for me. Granted, I miss the energy boost I had gotten from it. I felt great, still do just not as energetic. I have those fears too in the back of my mind. And the ones of being stuck in an emergency situation. This is why even though I've only been on for 78 days I want to cut my doses till I'm at 2mg. LOL I'm currently at 16. But I've heard some say cutting the dose in half is easy because it still reaches the ceiling effect or something to that effect?


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PostPosted: Wed Oct 27, 2010 6:36 pm 
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Dear Runner,

Gosh I am so sorry to hear that you went through all of that!!!! It sounds awful!

I recently had a total knee replacement. I had taken 4 mg of Sub up to and including the day of surgery. (Big mistake.) When I woke up from anesthesia, they were giving me everything in the book (IV Dilaudid 2 mg every hour, Oxycontin 2 X daily, Oxycodone every 2 hours,), and nothing did ANYTHING. That was a Monday. I flopped around like a long-tailed cat in a roomful of rocking chairs, screaming my head off for close to three days. The staff was beside themselves trying to help me. On Wednesday they started a Dilaudid PCA set to give a 0.5 mg dose every 6 minutes and I was pushing the button as often as I could. Plus I was still getting the Oxycontin and Oxycodone. They did not give me any more Suboxone in the hospital. Finally the pain did get a little more manageable, in that I was able to get up in a chair without screaming.

I was discharged that Friday with a rx for Oxycontin 20 mg 2 X daily, Oxycodone 5 mg q 2 h as needed, and I had a rx at home for Percocet 10/325 q 6 h PRN. I was eating these pills like candy. I have no idea how many mgs of Oxy I took, but it was a lot - an awful lot! Talk about tolerance! Even a week after my last dose of Sub, my tolerance was through the roof. I got scared and flushed the rest of the pills and started back on the Sub. again. I had a lot of pain after that, but it was worth it, and I would rather have the pain than abuse the opiates the way I was doing. It felt good to have my head screwed on semi-straight again.

At the hospital where I used to work, Fentanyl is not given for pain unless the patient is in a monitored situation. That means pulse oximeter, heart monitor, and immediate access to resuscitative equipment and staff. I would venture a guess that it is still the case and we would have a hard time getting IV Fentanyl unless we were in a recovery room, ICU or ER setting. They just don't have that kind of staffing or monitoring out on a regular floor.

I don’t know what the answer to it all is. Since going through the surgery it is a fear of mine as well. I try not to dwell on it.

Hopeful Sob, in addition to the excellent advice that you already received, believe it or not if you get some oil of clove and put a little on a piece of cotton and place it in the affected area in your mouth, that will also help with the pain.

I don’t know what the point of all of this is, but I sort of have PTSD from my experience and it helps to talks about it once in a while. Like labor, the memory of acute suffering does fade with time.

~Rossma


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