Buprenorphine, the good, bad and ugly

[Stainless]

One of my many doctors told me Buprenorphine is now Schedule III in my state, meaning it can be prescribed for RLS. Not sure if my Neurologist will but this doctor will. I've read recent posts on the subject but would like to consolidate opinions on whether it worked, continues to work, side effects, etc.

My current medications, Clonazepam and Pregablin, still get me to sleep but I usually wake 4 hours later in pain. I can usually walk it off or read a book and get back to sleep just to wake 4 hours later in pain again. If it's bad or I have to get sleep I take Hydrocodone which usually gets me back to sleep quickly but wears off quickly. I'm night crawling now at 4 am.

I hate to start another serious medication without getting off something. I would appreciate any incites into going on Buprenorphine, changing meds and your experiences. Thx Rick

[debbluebird]

I've had RLS since 1990. I've tried multiple meds. Mirapex worked sort of for a few years. Next came methadone and gabapentin which worked better, for a few years.
Now I take buprenorphine and gabapentin. This is the first time that I've gotten relief for several months at a time. That has never happened to me before. I'm taking 2mg divided into two doses. 4pm and 6:30pm. I just picked those times from my experience with Methadone. My Gabapentin is 1800 mg, again divided in into doses.
The only side effect that I have noticed is I'll get sleepy mid morning and around 5 or 6 pm. If I don't want to close my eyes and rest, I just get up from my chair and get busy. I'm retired.
Hope this helps.

[Stainless]

That's good information deb. I have to make the decision in a few days, at least for this 90 day cycle. Staying on Pregablin and starting the process of getting off Clonazepam replaced by Buprenorphine sounds like a plan based on what you are doing.

Anyone else out there with feedback. Rick

[Rustsmith]

I have not been able to convince my neurologist to let me try buprenorphine. I was interested because it is also been shown to be effective in treating Treatment Resistant Depression, which I have. However, read what you can about the dental problems that some burprenorphine users are having. It isn't know whether the problems that have been seen are due to the med, less than adequate past dental hygiene or both.

[buglegs]

I've had RLS for about 24 years now and I've mostly stayed on Requip.. I started having severe back problems, went through (3) spinal stimulators and eventually to taking the buprenorphine patches, the stuff I was on was called BelBucca..dissolves between the cheek and gum. Well while I was on the BelBucca I never took any type of Dopamine Antagonist, RLS was gone. Took the BelBucca for couple years and started to have really weird side effects, anxiety through the roof, claustaphobia really bad and suffocation feeling..stopped BelBucca and restarted Requip..currently trying to get off Requip..Be careful with any of the Buprenorphine medications, just be cautious because they work great in the beginning but they can cause some serious / weird side effects..

[debbluebird]

I haven't had dental issues or any weird side effects since starting buprenorphine. I have the film.

[Stainless]

Deb, or anyone, how long have you been on buprenorphine? Can anyone with dental issues chime in.

I had throat cancer last year and got a lifetime dose of radiation especially in the lower jaw. My radiologist and UF School of Dentistry warn of very serious consequences from dental problems. Even an extraction from the lower jaw would be a very big deal.

I'm also on clonazepam, a benzodiazepine, that would take significant time to wean off and I've read and I've read using both is contraindicated.

My RLS and PLMS are so bad now they make sleep very difficult. The opportunity to try buprenorphine is appealing but the more I dig into it the more of a train wreck I see. In the past I've read RLS Experts saying low dose methadone type drugs can be used indefinitely without increasing the dose. Now that is is available to me it does not look so appealing but staying where I'm at doesn't either.

[ViewsAskew]

Any opioid can cause dental issues. For me, it's dry mouth. I already had a lot of issues, but it's definitely worse with methadone. I already needed full mouth implants and now am a bit concerned to get them.

https://pubmed.ncbi.nlm.nih.gov/27492482/

[Roughrider]

Thanks for your reply ViewsAskew, I have been struggling with dry mouth but did not know what to call it. I too am on methadone and the dry mouth seems to make my sleep apnea more pronounced than before. Sorry to hear that you need full dental implants

[debbluebird]

More than likely your sleep apnea is worse because methadone decreases your heart rate and respirations. I have severerespiration. If I sleep on my back they are worse.
I find that if you can sleep on your side, that will help. If you can't, like me, I try to turn my head a little. My whole body is tilted to one side.
I put a pillow under half of my body, so it's sort of tilted to the other side to support my back. That makes it easier for my head to stay turned.
I also have the opposite side of my pillow elevated, so that my head rests easier to that side. I know this all sounds crazy. I put a very small pillow under that end of my pillow, so it's raised a little. I hope this makes sense.
If I sleep on my back my apneas are in the 30's. Half way on my side, 1 to 5.

[debbluebird]

Lately my RLS has started again, for about 2 weeks. They wouldn't give me the steroid shot in the right spot. She said she was afraid because of the bone on bone of me my spine as well as the hardware in that area. She did give me 7 lidocaine shots around the lower back area. So that really didn't help.
I'm going to ask if I can increase the buprenorphine.
Otherwise my last steroid shot was in Sept and the day before that was the last time I had any RLS. So it lasted 6 months. It was wonderful. The first time in my life without any RLS.

[ViewsAskew]

Lately my RLS has started again, for about 2 weeks. They wouldn't give me the steroid shot in the right spot. She said she was afraid because of the bone on bone of me my spine as well as the hardware in that area. She did give me 7 lidocaine shots around the lower back area. So that really didn't help.
I'm going to ask if I can increase the buprenorphine.
Otherwise my last steroid shot was in Sept and the day before that was the last time I had any RLS. So it lasted 6 months. It was wonderful. The first time in my life without any RLS.

So glad you had that time...but it is so hard to have that relief then have it come back.

[debbluebird]

I have a new pain Doctor. I've had her less than a year. She never asked me about my history. She just took over from the previous doctor I had started with since moving to Albuquerque. The first injection she did was in the right spot, last summer.
I had sent her a note that my RLS had returned and I'd been RLS free for 6 months. She won't put the steroid injections in the right spot. Said I was bone on bone and with my hardware, she refused. I think she was afraid. She put it in a different spot and it didn't help at all. She asked me if I'd try a DA. I told her my history. I told her no DA. So when I see her next time I wonder what she will suggest. In that office I see the PA who writes for the pain meds. That frees up the Doctors to do the procedures.

[Lissa496]

Hi all,
For those needing info about tooth decay, there is/was a lawsuit against the makers of suboxone for this issue. If you are considering or are on this medication I would suggest googling tooth decay lawsuit suboxone and finding out more about this issue so you can get your ducks in a row if you want to go on it.

Also, as many of you are probably on gabapentin, I would do the same as there was/is a lawsuit for this medication.
Lissa

[debbluebird]

I've never had any trouble with my teeth.