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 Post subject: Not exactly new, but....
PostPosted: Sat Mar 19, 2016 9:19 pm 
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..I haven't been here in a long time. Probably a couple of years. I've been on suboxone for just over 4 years, and clean for the same amount of time. I wanted to share something with everyone, and if it's been discussed by someone with a similar experience, I apologize.

Last year for 6 months, I was chosen to take part in the trial for the Probuphine implant, and as it turns out, I had the real thing in my arm. I actually figured that out in a very short time, but didn't want to screw up the trial, so I continued by the rules and kept taking my "suboxone" every day. (It was a double blind trial...I had the implant and I took a pill daily...one was a placebo, but I wasn't told which. It doesn't take an addict long to figure that stuff out).

On top of that, I was asked to speak in front of the FDA at their Open Public Hearing on Probuphine back in January. I'm honestly not sure where to start as I would like to add some background on myself, but once I start typing, this will be so long nobody will read it.

So....I'm going to kind of leave this as an "Ask Me Anything" type of thing if anyone has any questions about my experiences or anything at all. I've learned a lot, met a lot of people and made a lot of connections through this experience, and it's been quite an interesting ride.

I really want to do more to help people, but due to my profession (I'm a firefighter in a small town in New England), I feel I need to remain anonymous. It really sucks that I even have to feel that way, but it's the world we live in, and maybe someday I can get past that. So, I was hoping that maybe this was a way that I could make myself available to help people.

So please, feel free to ask me any questions, whether it be here on the forum or via private message. I'll do everything I can to help out however I can.

Moderators...if you feel this should be posted somewhere else, please let me know or feel free to move it where you feel it belongs. I'm by no means trying to take over anything, or come in with an attitude that I've seen it all done it all. Not even close. I've been through a very interesting experience, and I feel that that experience can help people, and I promise you that is the one and only reason I'm here.

Thank you for taking the time to read my post and I hope to hear from some of you folks.


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PostPosted: Sun Mar 20, 2016 4:23 am 
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Hi and nice to meet you WFDLt!
I wish you had of written more about yourself. I'm sure many people will be interested in who you are and all that led to the trial past and present.
You sound like a very kind and compassionate person and I love that you want to help ppl.
It takes a special kind of someone to be a fire fighter. Good on you!
I hope you will keep posting!


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PostPosted: Sun Mar 20, 2016 12:43 pm 
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I would love to hear anything you have to post. About your background, your opinion on the patch and trial, opinion on this type of medication for this type of disease, if you even agree that it is a disease. Whatever you have to say I certainly want to hear it. I come from a small town in NE so I know how that is. Anyway, glad you posted and I want to hear more especially since you worked so close to the big pharm folks that are always trying to come up with something that works. The patch is an interesting idea but I thought to myself a very tricky kind of treatment and can't see how it would work for many of us. Maybe a very particular group of people.......

anyway, welcome, thanks for posting, love to hear more, peace, megster


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PostPosted: Sun Mar 20, 2016 1:04 pm 
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What a gift you are willing to give to those of us on this forum! Thank you for coming here to share your experience!

I would love to hear your story too, but I'll ask some specific questions.

How did you get involved in the study?

Why did they choose you to speak in front of the panel?

What was your experience like on the medication?

Did the panel seem to be receptive to the medication?

Do you know how close probuphine is to being approved?

I have a friend who is the fire chief of a small town in Maine. If I get a chance I will have a dialog with him to find out what he thinks of MAT in his employees.

Thank you for bringing your story here!

Amy

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PostPosted: Sun Mar 20, 2016 1:21 pm 
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Good questions Amy,
This one I can answer (sort of)
Quote:
Do you know how close probuphine is to being approved?


I was scheduled in April for a training in how to insert it but it was cancelled pending further review by the FDA. Last I heard they are still several months to launch, if it does come to market.


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PostPosted: Sun Mar 20, 2016 1:37 pm 
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Thank you for the warm welcome. I am a patient with Cleanslate, and have been for a few years. There is a clinical research company near the office that I visit, and they contacted Cleanslate looking for people to be involved in the trial. I was chosen based on my dose (8mg/day) and for how well I've done with my treatment. It sounded interesting, so I was all for it. It honestly didn't hit me how huge it was until it was pointed out to me how many people this could help. I mean...the FDA? That's no joke lol. My 15 minutes of fame that I can't tell anyone about.

I had been done with the trial for about 6 months when the research company called to let me know I had received the actual implant. (Probuphine is an implant, not a patch as someone mentioned. It's implanted under the skin like one of the birth control methods available. 4 medicated rods were placed, and they use some form of time release for the 6 months. The chemistry of that is way over my head, so I don't even try and understand it). They also told me that the pharmaceutical company wanted to speak to me about possibly speaking in front of the FDA, which I agreed to do. That was quite an experience. They were very good to us. I was with 2 other patients, both from Florida. We became fast friends. No matter how good your support system is, nobody "gets you" like somebody who has been there, so we hit it off immediately. There were around 25 speakers including the 3 of us. Others included doctors, family members of people lost to addiction, and a variety of others. It was incredibly emotional even though we were only allowed 3 minutes to speak. Only one person spoke against it, and I was told by the PR people who were basically our handlers, for lack of a better term, that that person was probably from another pharmaceutical company. I wish I had been able to respond to her statements, because I could have proven her wrong on just about everything she said based on personal experience.

The people we spoke in front of were an advisory committee, and at they approved it after the hearing, though that is only part of the process. Just a few weeks ago, the FDA voted to delay their vote on Probuphine, citing more information was needed on the training aspect of it. I was disappointed, but was reminded that a delay is better than a denial. A decision will be made on or by May 27th.

I found it to be an excellent treatment. Not that taking one pill a day is a big deal, but when you have to conciously put aside the time to take it correctly, it's nice to know you don't have to deal with that. To put it simply, I just felt perfectly normal all the time. I get no recreational effect from Suboxone, but I can tell I've taken it. I'm sure that makes sense to all of you. Another big part of the argument in favor of it, was it totally takes away the chance of medication diversion, or accidental ingestion by a child.

I honestly don't know exactly what the treatment plan will be if it's approved. Obviously you can't be weaned from an implant. Once it's removed, it's gone. I had a small delay in getting back on suboxone, and did have some slight withdrawal. Nothing terrible, but when it comes to that, a little is too much. Also, I have 2 rather significant scars on the inside of my left bicep. The other 2 people I met had theirs done in surgical centers and have very small, barely visible scars. I believe this is part of the training they're concerned with, so I can't really argue with that.

I hope that gives you a little more insight, and please continue asking anything you'd like. I just wanted to touch on a few things people had mentioned. I could probably go on for quite some time about my experiences.

I'd also like to add, one of the patients who I met in Maryland, is currently involved in another trial involving a shot that is given monthly. It's the same medication as the implant, but in liquid form. When it comes in contact with tissue within the body, it crystalizes into a lump (her words lol), and then it dissolves giving you a consistent dose. She said she loves it. I'm actually looking into getting involved in the same trial in my area. (I'm in Massachusetts, and SSTAR in Fall River is doing the trial with the injectable medication if anyone is from the area or familiar with them, try and look into it. If you're interested, send me a private message and I can give you some contact information that I was given).

The experience has been very interesting. Last week I was interviewed by a woman from NPR for a story that will air if the medication is approved. I was interviewed by a reported from the New York Times and mentioned in her article/blog. My new friend from Florida was on NBC Nightly News recently, and will have a more in depth piece about her air at some point. And just the other day I proof read what is basically a re-creation of my speech in MD that will be posted, I believe, on the Boston Globe website. I could be wrong about that one, and I'll correct it if I am. I have some interesting links I will post up as soon as I have some time to find them and present them in a way that makes sense. Ok, I'm really going to sign off this time.

Thank you again for the kind words. Be safe all of you.


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PostPosted: Sun Mar 20, 2016 3:06 pm 
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Excellenct info! Thank you WFDLt!!! megster


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PostPosted: Mon Mar 21, 2016 1:03 pm 
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Very interesting!! I have a question, did this implant take care of ur cravings completely like suboxone does?

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PostPosted: Mon Mar 21, 2016 1:18 pm 
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Yes, absolutely. The implant works just as well as suboxone and on an even more consistent level. It was like constant normalcy. I have 2 jobs that have me working 4 nights a week. So my sleep schedule is a nightmare, and I'm not able to take my suboxone at the same time every day. There have been times I've taken it early one morning, then my next dose might be late the next night, which causes me some anxiety at times. With the implant none of that stuff is an issue.


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PostPosted: Mon Mar 21, 2016 3:11 pm 
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Good afternoon!

Wow, thanks for doing this. I am asking you to just keep writing and telling us any and every part of your of your story. I do not know enough about it to ask questions. You mentioned earlier that you could go on for quite sometime with more information - I'd love that if you would be good enough to write what comes to mind. In advance, thanks for this!! Best. Pelican

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PostPosted: Mon Mar 21, 2016 8:47 pm 
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Thank you for sharing, WFDLt! I am new and very much still in the process of learning, and didn't know there are potential alternatives to sub that exist and are being studied. I don't know if husband knows, either, so this provides a new opportunity to discuss recovery-related issues. Thank you!!

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PostPosted: Fri May 27, 2016 10:04 pm 
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Just read a news blurp:

"The US Food and Drug Administration (FDA) has approved the first buprenorphine subdermal implant (Probuphine, Titan Pharmaceuticals/Braeburn Pharmaceuticals) for the maintenance treatment of opioid dependence, the agency announced today.

The product consists of four rods, each measuring 1 inch, that are implanted under the skin on the inside of the upper arm. It provides a constant, low-level dose of buprenorphine for 6 months in patients who are already stable on low to moderate doses of other forms of buprenorphine."

Will be interesting. Hopefully, we will get posters describing their experiences w it here? Wonder what Dr. J's & doc2m's thoughts are? What were the study effectiveness results? Are patient's asking for it? Will you prescribe? Does insurance cover? Seems a real benefit to non USA countries w limited oral take home's allowed.

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Stopping went well -- its the staying stopped -- where the real work begins.
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PostPosted: Fri May 27, 2016 11:38 pm 
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The question I have has almost been answered already. I'm curious to know how much Buprenorphine is released during 24 hour period. Does it come in different doses like the Butrans Patch, which releases 10 or 20 micrograms. That is a really low amount that seems effective at treating pain.

So if someone was dosing 8 mg's per day, do they have an implant to match those numbers?

Welcome back and thanks for giving us all this information!

rule

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