How long is the longest patient out there?

[Amy-Work In Progress]

Hi Marie,

I'm wondering if your doctor isn't looking at you as more of an experiment. Like he wants to see what happens if he absolutely forces you off buprenorphine. Obviously he is not listening to you and if he is just wondering what will happen if you go off the medication, he's not being a good doctor.

I agree with you that you need to start looking for another doctor, since your current one seems to think he can just dictate what you need.

Congratulations on all of the wonderful things you've done to improve yourself! It really is impressive!

Amy

[jennjenn]

Marie I loved reading ur story! U show just what this medication can do to help us make a better life for ourselves. I get really upset when ppl act like this medication is negative.

I'm like u, I'm not sure I'll ever be ready to stop this treatment but if I do I definitely want it to be because I'm ready and not being pushed to do it. I get exactly what ur saying and agree 100%. If u have to find a doctor that's on board with ur needs then that's what u should do. That's what I'd do too. It'd be scary to start over somewhere else but if u have to then u have to. I totally get it

Welcome to this forum ☆

[jonathanm1978]

I've got a decent history on Suboxone. First, I started with the orange pill N8...then moved on to the film - by choice at the time...(then found they pulled the wool on their own drug in order to sell a new drug)..

I remember the pill price eventually got down to around $4 each...and starting with the film, they were around $7 or $8 each..that was in 2012 or so..
And still, to this day...Here's an idea of what I pay (take away that coupon from RB that makes my price $25)


Right at $7.48 each.

[Bamagurl22]

Hi Marie, I loved reading your story as well. Congratulations on weaning down to such a low dose too. Well done. Yea, I'm like you, I don't know that I'll ever be ready to come off Suboxone. I'm able to accomplish so much on this medication and I don't want any craving raining on my parade so to speak. I see you've been here a while and just haven't posted. Welcome back my friend. Don't let. that heathen Dr. of your talk you into something your not ready for. No freaking way I'm coming off Suboxone if I'm able to get it, and not ready to come off. Hope your having a good weekend. --- Bamagirl

[marie]

Thanks so much for all your responses!

It feels nice just to talk about this with people who completely understand and can totally relate.

I do realize that half or greater of my recovery and achievements/quality of life over the past 7+ yrs are
due to my hard work. But, Im also quite confident that this medication deserves LOTS of credit for the
person I am and the life I have today.

4mg dosent hold me for a full 24hrs like 6mg, 8mg, or higher doses did. If I'm busy and fail to take my dose until the evening, I start experiencing withdrawals. And to be honest, I feel like I can't think straight.

I have panick attacks, anxiety, and fatigue. I can't even wrap my head around how I may feel after several days or weeks without this medication. My doctor said it's not a great medication for anxiety or depression. However, I've suffered from both since I was very young.

For the first time EVER, I feel what I imagine "normal" people feel like. Sure, I still have shitty days and get stressed and upset just like everyone does. But, Im not bed ridden....wanting to die....abstaining from showering due to lethargy, or feeling like I don't belong in my own skin....like I have before Suboxone.

I'm gonna "try" to succeed reducing to the 3mg next month. But, I have no intention reducing any further for quite some time. I do have another doctor I may call. I saw him for the first 1.5 yrs of my treatment. He's basically a script doc though- in & out in less than ten minutes and he pretends he's listening to you while he's writing your script. (Which I personally don't like). I'm also going to search for new doctors. But, as everyone knows that can be like searching for a needle in a hay stack. It may also prove to be expensive paying for consultation after consultation.

If there's anyone out there on 3mg or less, I'd really love to hear from you as well. I'm curious about the length of maintenance some patients have on small doses.

Again, thanks in advance for any advice and support!

[jennjenn]

I think Amy is on 3mg and has been for as long as I can remember. Michelle is around 4mg I think and has been for a while too. I'm sure there's more. I can't seem to get below 6-8mg. I just start feeling rough below 6mg, so I kinda understand what ur saying. I've heard that ya just got to slowly adjust to lower doses. I've also heard that dropping to 4mg should be fairly easy but it hasn't been that way for me lol. I stay in my own head to much though, I get so nervous and convince myself that I'm feeling bad...so I don't know how I'd ever drop down since I'm scared half to death to lol. I've always worried more than the average person I think. Anyway, I just wanted u to know that I relate to u dropping and feeling like it's not holding u the full day. I'm still at 8mg, and I'm honestly happy at that dose because when I've tried to go lower, it just freaks me out

[Amy-Work In Progress]

Yup! 3mg. I just had my 5 year anniversary being in recovery!

Amy

[marie]

Congrats Amy!!!!!

If you don't mind me asking, what dose were you on previous to your current 3mg and how long were you at that previous dose? How long have you been on 3mg? Was it difficult to reduce to 3mg? I had an extremely difficult time reducing from 6mg to 4mg. I'm hoping it's not as difficult to go down to 3.

It's taken me at least 6 months to finally feel comfortable on 4mg.

My doctor mentioned at one point that he usually has his patients wean off very quickly once they get below 4mg....like, within months. There's no way in hell Im ready to taper off completely right now.
And, if & when I am ever ready...I would prefer to get down to 1mg or even microgram doses before jumping off.

I've been on Buprennorphine (Roxa) for yrs. Have I'd lots of success with this formulation/brand and would prefer to stay on this version. My pharmacy has this in a 2mg, but I believe they're pretty small.
I'm hoping I don't have difficulty cutting them.

Are you on Suboxone or Subutex?

[Amy-Work In Progress]

Hey Marie!

I am on Zubsolv which is just another brand name for the buprenorphine/naloxone combination. I say that I'm on three mg, but Zubsolv is supposed to be more absorbable, so each pill is 1.4 mg of buprenorphine instead of 2 mg. I take 1 and a half pill of the Zubsolv, which is 2.1 mg of buprenorphine, but is equivalent to 3 mg of suboxone. Sorry if that's confusing.

I started out on 16 mg of suboxone. After 6 months on that dose I started tapering. One side effect that I had was that my joints were sore on 16 mg, especially my hips and my knees. This is not a side effect that everyone has and it's not even a proven side effect by scientific study. However, there have been enough people who have complained about the same thing that I'm thinking it's may be a reaction to something inactive in the suboxone strips. As in, it's not from the buprenorphine or the naloxone, but from an ingredient that makes up the strip material. The reason I connect it with the suboxone is that once I tapered from 8mg to 6mg the pain in my joints just as suddenly went away.

In any case, it took almost a year to taper to 2mg of suboxone. My insurance company made me switch to Zubsolv and I found that I had to go from one pill to one and a half pills. I think I've been on the lower amount for 3.5 years. That's my best estimate.

Hold strong, Marie, if you need to stay where you are. I hope that your doctor is willing to work with you at your own pace. If you don't feel ready to taper off, make sure you are very clear with your doctor about that.

Amy

[marie]

First....Happy Thanksgiving!!

Amy, thanks so much for all your info and insight. And, congrats on your incredible success!

I'm pretty nervous about reducing to 3mg next month (as it took me at least 6 months to adjust to this dose and I can honestly say reducing from 6 to 4 has been the most difficult for me physically of all my reductions). However, I'm petrified and no-where near ready to wean completely off right now. For me, it's healthier not to give myself a timeline.

Tomorrow, I'll begin my search for a new doc. It saddens me because my current one is quite good and has helped me a lot. I induced on Suboxone and was happy with that formulation, but had to switch to
Subutex after I became pregnant with our son. I've remained on Subutex/Buprenmorphine ever since (approximately 6 yrs).

I wonder if anyone has had trouble at all switching over to Suboxone after being on Subutex. I know some doctors only prescribe Suboxone, so I'm preparing myself for the possibility that I may hafta switch. If this is the case, perhaps I'll try the formulation you take.

Thanks again for your support!

If anyone out there has switched from Suboxone to Subutex (especially at lower doses), PLEASE chime in to report your experiences. For some reason, I feel like I remember reading somewhere that some patients experience increased withdrawal symptoms on really tiny doses when the Naloxone is present.
It would really ease my mind to hear from someone who transitioned from Suboxone to Subutex smoothly.

[Bitfloyd]

I've been to this forum from time to time over the years mostly in search of information when I wanted to know that there were others out there like me, but this is my first post ever.

I'm a 39 y/o male with a beautiful wife (who has been 1yr without sub as of Christmas day). Ive taken it every day of my life for 8+ years. I've relapsed several times over the years, but I always crawled back to the wagon and cotinued the journey.
I went from 24 MG down to 4mg and stayed there for years. Once my wife tapered off I went to 2mg tabs and was almost immediately able to get by on half of one of these.
Back and forth from 1 to 2mg for a year or so without relapse and as of 6 days ago I completely stopped taking suboxone after 8+ years. I never intended to stop, I just decided to try with some wife prodding.
Im not gonna sit here and lie to anyone. It still hasn't been an easy week, but it's gotten better every day since day 5.
If you've read to this point in this post you obviously can relate. The point I'm trying to make is suboxone doesn't have to be forever. Be brave, be bold, taper very slowly on your own terms. This is a personal fight that we will all fight for the rest of our lives. I have 40 2mg tabs at the pharmacy and an unfilled script for 90. One day soon I'm gonna walk up to my pharmacist who I've had for years and has never one time judged me or been anything but a perfect professional and tell him to cancel that script and throw the unused one away. God bless you all and may you all find peace in the world without pill-colored glasses.

[HTOWN]

Hi Bitfloyd-That's great that you were able to taper and you don't feel too terrible!! That's the way to do it!!

[SisterMorphine]

Hey Marie!

I am on Zubsolv which is just another brand name for the buprenorphine/naloxone combination. I say that I'm on three mg, but Zubsolv is supposed to be more absorbable, so each pill is 1.4 mg of buprenorphine instead of 2 mg. I take 1 and a half pill of the Zubsolv, which is 2.1 mg of buprenorphine, but is equivalent to 3 mg of suboxone. Sorry if that's confusing.

I started out on 16 mg of suboxone. After 6 months on that dose I started tapering. One side effect that I had was that my joints were sore on 16 mg, especially my hips and my knees. This is not a side effect that everyone has and it's not even a proven side effect by scientific study. However, there have been enough people who have complained about the same thing that I'm thinking it's may be a reaction to something inactive in the suboxone strips. As in, it's not from the buprenorphine or the naloxone, but from an ingredient that makes up the strip material. The reason I connect it with the suboxone is that once I tapered from 8mg to 6mg the pain in my joints just as suddenly went away.

In any case, it took almost a year to taper to 2mg of suboxone. My insurance company made me switch to Zubsolv and I found that I had to go from one pill to one and a half pills. I think I've been on the lower amount for 3.5 years. That's my best estimate.

Hold strong, Marie, if you need to stay where you are. I hope that your doctor is willing to work with you at your own pace. If you don't feel ready to taper off, make sure you are very clear with your doctor about that.

Amy

i've had ridiculous joint pain. i really began to notice it 4 months ago what i started subs. do you think its related? i was tested a couple years ago for RA, but the test was negative. my grandma had it though. my hands are so swollen i can't even spin the rings on my fingers.

[Amy-Work In Progress]

I'm not sure Sister M. if the buprenorphine is your problem or not. Is lowering your daily dose an option to try and see if that would help?

Amy

[SisterMorphine]

I'm not sure Sister M. if the buprenorphine is your problem or not. Is lowering your daily dose an option to try and see if that would help?

Amy

i went from 16mg to 8mg in a couple months. it may be a little better. i think the painkillers were keeping me from being in pain (lol obviously) my therapist gave me the name of a rheumatologist. i'd rather find out and not destroy my joints. my grandma had her hip replaced and my ggma had both her knees replaced from their arthritis. i have been taking coconut oil for the last couple months with my morning dose. i do believe it may be helping some. plus glucosamine. its weird, even if i fall asleep on the couch for 20min my joints swell and stiffen up and hurt.

[Amy-Work In Progress]

Your symptoms are definitely much more extreme than mine, so I'm glad you're following up with a specialist! The worst I felt was some hip and knee pain. I actually wonder if there was some inactive ingredient in the suboxone strip that caused my reaction.

Good luck with your appointment and let us know what the doctor finds.

Amy

[Boomer69er]

I've been on subs for 4 years. Same doctor still, but have recently been feeling pressure to begin the "taper." I'm grateful I found this forum especially this thread cuz I've been starting to believe there is something wrong with me and I'm some sort of failure cuz I haven't quit suboxone yet. when the truth is this is the most stable and successful my life has ever been since Jr year of hs when I had asports injury and was prescribed hydros. You know how that story goes. but in the 4 yrs I've been on suboxone I have accomplished things beyond my highest hopes have a thriving business and professional life with no urge to use other than when I feel the pressure that I "should" already be off suboxone. My family doesn't understand addiction and even if they did we wouldn't really talk about anything that could cause disdain or confrontation. I feel much better after reading some of your stories and it's made me begin to wonder if it wouldn't be better for me to stay on suboxone for the foreseeable future instead of begin pressured into quitting and hopefully staying clean....I'm on 2mg a day

[jennjenn]

Hey Boomer so happy to hear suboxone has had the same results on ur life as it has mine! I too think my life has done a complete turnaround since starting suboxone treatment. It's actually amazing to think bk at how far I have come. I finally get to feel 'back to normal' again.

Don't feel pressure to stop or taper before ur ready, and if ur doctor is pressuring u to taper off, maybe look for another doctor that's got ur same views on how u would like ur treatment to go. That's what I would do if that time comes.

[Michelle F.]

Hi Boomer, Yes, I agree with Jenn 100 percent! You stop or start to taper when you are ready! Don't let anyone tell you when the time is right, not even your Dr.! A good Dr, in my opinion, will workout a taper plan, when YOU are ready!

[spider628]

I know I am very late to post on this thread. But I just found it. I began on suboxone in August 2004. I have been on it daily ever since. So it is now about 17 years, 5 months. I could be the longest patient on this drug. Probably not.

I have had many problems bc of suboxone, such as teeth cracking and falling out. But by far the worst has been the hypogonadism, or drastic drop in testosterone levels which then causes myriad other problems. Since I already had one damaged testicle from an untreated urinary tract infection in the early 1980s, my T levels were already reduced. Then as I aged they naturally continued to drop. Then add in the opiate abuse, and now suboxone for 17+ years and it's a recipe for disaster. One scale says about 46.0 to 224.0 is the normal range. In September 2021, my T was measured at 7.8, where 46 is the bottom of the normal range. So it's down in the sub-basement.

We have all heard about reduced sex drive, or libido, when taking buprenorphine. So after my wife left me I can remember not being aroused for any reason for a long time. Then to my utmost horror, when I did become aroused one day (don't remember why), I looked down and was shocked at what I saw. I was maybe 20-25% smaller and sort of misshapen. Curved when it shouldn't be curved like that. Yes, I did T injections which only wore off when stopped. And docs are very hesitant to give those for too long bc they can precipitate prostate cancer. I was sent to an endocrinologist who only told me there was nothing he could do for me.

Fast forward a few years and now I am in a really great online relationship with a sweet, loving woman in a foreign country. We plan to meet and get married in the U.S. I am hell bent on being a good husband to her, so once again I am seeking help and options. My regular doc has referred me to a specialist who is going to implant a small pellet in my hip. The pellet will release natural testosterone into my body. There is no cancer worry bc this is natural, not synthetic, testosterone. I am excited and really hoping this treatment will make a difference.

But most of all, I am going to start weaning off suboxone. After all, that is the root of the problem. Please wish me luck and God speed. Thanks for reading this post.