Buprenorphine

[Happykaz]

I am currently taking 300 mg Pregabalin around 7pm and 2x 30 g of codeine (sometimes 3x 30g) during the night. I am also taking ferrous sulphate at 10pm each night. This isn’t working. I take the first codeine half an hour before bedtime and maybe sleep for 1 to 2hours. I then have to walk around/have a shower etc and wait to take the next codeine tablet. This may work again for 1 to 2 hours before I have to get up again.

I am seeing my doctor to discuss this and want to ask for Buprenorphine. (She had seemed open to this in the past) . There seems to be several forms of Buprenorphine and I’m not really sure which is best or what to ask for. I also notice it works for 24 hours. What impact does buprenorphine have on daytime activities. Does it make you less alert etc etc? I know everyone is different so I know it may react differently for me than you. I have always been pretty active and play sport (although this does make my RLS worse afterwards) and wondered how Buprenorphine might impact my response time etc.

Thanks for your help.

[Joolsg]

Did you discuss the possibility of iron infusions with your GP? It may really make a difference to increase your serum ferritin before you move onto opioids.I take generic Buprenorphine pills. 0.4mg a night. I take 0.2mg at 9pm and 0.2mg at midnight. I have zero RLS.

I can't comment on alertness etc because I also have MS and that causes extreme fatigue.

All I can say is that I feel a lot better now that I am sleeping 8 hours every night. Pregabalin and gabapentin made me a lot less 'alert' in the daytime than opioids. But, we all react differently to meds.

[Happykaz in reply to Joolsg]

Yes we did discuss an iron infusion but my doctor thought we’d try iron tablets first and my ferritin level is now 147.

I think I have refractory RLS having augmented on pramipexole and have since tried several different different medication including gabapentin, pregabalin, clonazepan, and now codeine. I’m not sure if there is anything else worth trying first?

Thanks so much for your reply, it is really helpful. I too have noticed my reactions have slowed since taking pregabalin. Thanks again for taking the time to reply.

[Joolsg in reply to Happykaz]

Your GP may suggest other opioids, and they do work well for many. However, Oxycontin caused rebound daytime and evening RLS for me. It's supposed to cover symptoms for 12 hours but it definitely doesn't.If your GP is willing to let you try Buprenorphine that's great. I had severe nausea and vomiting the first week so added medical cannabis and it stopped the nausea. I then developed panic attacks after 4 weeks and added 25mg pregabalin at night. That stopped the anxiety/panic attacks.

You may have zero side effects, but it's useful to know there are solutions to any that may arise.

Good luck.

[Joolsg in reply to Happykaz]

As to which type of Buprenorphine. It comes in sublingual pills and skin patch but a few people mentioned that the patch seemed to lose effectiveness after 3 days and they then suffered RLS for the remaining days. However, Lotte finds the patch works better for her.Most people on Buprenorphine on this forum take pills as the patch is more frequently used for chronic pain.

I take Buprenorphine generic tablets. The dose ranges from 0.2mg to 2mg.

Tablets have a half life of 24 hours. So it is highly effective at covering severe RLS. In the UK the pills are sublingual. We don't seem to have the buccal film available in the US.

I personally have discovered that Accord brand works best for me. There is also Temgesic, which is a brand name for Buprenorphine. That comes in 0.2mg pills. Generic Buprenorphine comes in 0.4mg pills.

I started on 0.8mg but it was too high and I reduced to 0.4mg. I now cut the 0.4mg pill in half and take it at 9pm and midnight.

So, I would ask to start on generic Buprenorphine 0.4mg pills and cut them in half. Increase by 0.2mg a night until your RLS is fully covered. If you suffer daytime fatigue etc, you could then try the skin patch to see if it makes a difference.

As usual with RLS, it's trial and error and what works for one doesn't necessarily work for another.

[Happykaz in reply to Joolsg]

Thanks so much, that’s really helpful.

[TheDoDahMan]

When speaking of codeine dosages you type in "g". Would you like to change that to "mg"?

[Happykaz in reply to TheDoDahMan]

whoops, sorry

[Mulberry100]

I was very interested in your post as I absolutely mirror your experiences, except I started my medication journey many years ago with neupro patches. I have tried absolutely everything and just when I think something is working I feel the need to increase the dose, which having done that with the neupro patches, augmented and experienced the most awful withdrawal symptoms, I am always reluctant to do. I am currently on Oxycodone, slow release at 7pm (designed to last 12 hours) plus an immediate release at around 1am because the slow release tends to only last for 5 - 6 hours. I am still waking at least every couple of hours when I need to do something physical to distract the need to scream! Only benefit is I have is a very clean house, I have been known to be cleaning windows at 2am!

I am trying to give the current regime a good trial but have, a reluctant pact with my GP, that if it doesn’t work I will be asking for Brupenorphine as I have trialed everything the Neurologist, I saw last year, asked of me (changing to Pregabalin, trying Clonazepam and now Oxycodone) before moving on to Buprenorphine. Goodness knows why she wouldn’t prescribe straight away when it clearly works for so many sufferers. I am 76 years old and would like to think I could have a few years without suffering this horrendous disease or at least know I have tried absolutely everything! It will be good to follow you to see how you get on. Good luck I wish you well.

[Happykaz in reply to Mulberry100]

Thanks for your reply and best wishes. I got agreement from my doctor this morning to start on Buprenorphine. I have decided to delay the start until the beginning of July as I have got to look after my 97 year old mother for a while and then I’m on holiday. I don’t won’t to worry about possible side affects. Meanwhile my doctor has increased the codeine.