Warning about long term Buprenorphine.

[angelsreign]

I have been using a buprenorphine patch for several years and while it is effective in controlling pain and reducing the symptoms of RLS, it can have serious side effects.

I have recently had problems with my teeth, healthy teeth have been crumbling. Because of a very painful infection, I had to have emergency dental treatment. It seems that a side effect of Buprenorphine is that it can inhibit the production of saliva, which is essential for oral health.

I had to have four teeth extracted and it is not certain that the rest can be saved.

I have to say that I am still in shock and I wouldn't like others to have similar experience.

[Madlegs1]

That issue was flagged here a while ago.

I think it may apply only to the oral patches/ buccal? And not the pills ,.

But you'd have to get that confirmed.

[angelsreign in reply to Madlegs1]

I have actually been using a skin patch.

[LotteM]

Thanks for the warning! Fortunately, I am now on a skin patch and as Madlegs addresses, the problem applies mainly to sublingual tablets and oromucosal patches I think.

[angelsreign in reply to LotteM]

I have been using a skin patch

[Madlegs1 in reply to angelsreign]

Ok -- that's important information, and thanks for the heads up!

I'm sorry to hear of your troubles.

[LotteM in reply to angelsreign]

Indeed. As Madlegs says that is important and new information. All bup users should be vigilant.

[Joolsg]

Thanks for posting this. I have heard this from several sources and am aware my Buprenorphine causes dry mouth.I will speak to my dentist to see if there are any preventative treatments.

Buprenorphine is the only med that has stopped my severe RLS and I would be very reluctant to stop taking it.

Off to take out dental insurance!

[Inkosikazi in reply to Joolsg]

Me, too, Joolsg. It was because of your comments on this forum about buprenorphine that I asked my doctor to let me try it. Best remedy so far. So thanks!

[Joolsg in reply to Inkosikazi]

Delighted it has helped. Now we need to look after the dry mouth and teeth problems.....

[angelsreign in reply to Joolsg]

I stopped a few days ago and really miss it, my RLS has come back with a vengeance. I had been using the patch for a few years though. Like all side effects, it probably wont effect all users.

[Joolsg in reply to angelsreign]

Did you stop becauseof the teeth problems?

[angelsreign in reply to Joolsg]

Yes, I did. Having 4 teeth out was really traumatic and others are in danger too.

[Joolsg in reply to angelsreign]

I am so sorry to hear that and I am devastated for you and others who are having such relief form Buprenorphine. It took me 5 years of severe RLS after stopping Ropinirole to find relief with Buprenorphine. It really has been miraculous. I have no teeth issues at all at the moment and am now taking steps to try to avoid any in the future. I have bought the dry mouth Biotene products recommended by jelbea to try to avoid tooth loss.

Thank you for warning us. What will you do now? Will you start another opioid like tramadol or oxycodone or try pregabalin? I really hop you can find something to cover the RLS.

We really are caught between a rock and a hard place.

[angelsreign in reply to Joolsg]

Thank you, I will try to speak to my doctor - it's not easy. At the moment I have left the patch off, but I am certainly suffering for it. I haven't been to bed in the last 10 days.

[SueJohnson in reply to angelsreign]

Have you had your ferritin checked?

[angelsreign in reply to SueJohnson]

Not specifically, but I have just had a general blood test and ferritin levels are "normal"

[Joolsg in reply to angelsreign]

Normal for general population is 15. RLS patients need much, much higher levels. Over 100, preferably 200 for serum ferritin and over 60 for serum iron so ask for the actual figures.Sadly, most doctors are unaware of low brain iron being a main cause of RLS.

Many benefit from iv iron infusions and several RLS patients have now received them on the NHS in the UK.

[angelsreign in reply to Joolsg]

Thank you, I will try to speak to my doctor

[SueJohnson in reply to angelsreign]

The problem with a doctor saying it is normal is that what is normal for other people is not normal for those of us with RLS. Do you know what your ferritin is?

[angelsreign in reply to SueJohnson]

Thank you, I don't know. I will try to speak to my doctor. I have had RLS all my life, as did my father. There was even less understanding then.

[Jelbea]

I see all the replies you have to your post. I have been on buprenorphine patches and I am now on sublingual tablets. Both the patches and the tablets have made my mouth dry. I use Biotene dry mouth spray. You can a whole range of Biotene products - toothpaste, etc. It contains xylitol which helps prevent tooth decay. There are many other products designed for dry mouth and nearly all contain xylitol. Do not use a mouthwash containing alcohol which will make matters worse.

I have read that when you use the sublingual buprenorphine tablets you should take a good drink of water, washing it round your teeth, and then follow with a small drink of milk or small piece of cheese which helps to counteract the acidity of the tablets. I always spray my mouth with Biotene before settling down to sleep and during the night when necessary.

Hope this helps.

[Whippetmama in reply to Jelbea]

Just a heads up if you have dogs. Xylitol is EXTREMELY toxic to dogs. Keep the Biotene out of reach.

[Jelbea in reply to Whippetmama]

Thank you for your info. I should probably have mentioned this.

[Renaul]

Thank you for this information. I have used the sublingual tablets for 18 months and have had a sore mouth for the past 6 months. I am about to see my dentist foe advice, I had wondered if it was connected with the tablets.

[Hidden]

Yes, dry mouth is a terrible consequence of a lot of medications and certain auto-immune diseases. Saliva is more than a lubricant, it remineralizes teeth. For that reason, I find this a fascinating addition to the usual recommendations of sucking on sugar free candies, drinking more water and mouth rinses. byte.com/community/resource...

I am going to find a good one and buy it. The “nano” ones are allegedly superior.

[Hidden in reply to Hidden]

Just bought a brand called Boka. Expensive unfortunately.

[angelsreign in reply to Hidden]

Thank you for mentioning the remineralisation. My doctor told me to drink more water, that of course is not the answer.

[Butterflysun1]

Thank you for posting this information. I have been tempted to ask to start Buprenorphine but am so wary of unrecognised long term side effects for everything we might take - basically, as we say in Scotland, it seems that for those of us with severe RLS, ‘we cannie win’!

[Amrob]

Thanks for the warning but how terrible for you!