buprenorphine patch - any advice? - Restless Legs Syn...

Restless Legs Syndrome

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buprenorphine patch - any advice?

Drls profile image
Drls
27 Replies

Hello, my GP has agreed to prescribe me the buprenorphine patch 5mg starting from Monday. He will not prescribe tablets at this point - he feels the patch will give me better coverage for both the pain in my joints and also my chronic restless legs and will counter the continual withdrawal type issues that I’ve been having on oxycodene.

I am nervous for several reasons:

Is 5mg enough to stop a massive withdrawal effect from the oxycodene? I am terrified of going into complete withdrawal since my symptoms between doses have been so extreme

He has also prescribed me some 5mg oxy to help me ‘if I get into trouble’ - however I thought there were some issues with taking oxy with buprenorphine because they work on different opioid receptors, does anyone remember anything concrete about this?

I note that people have had nausea when first taking buprenorphine and that medical cannabis has helped. My GP will not support me in accessing medical cannabis and I csn not access my health records on the nhs ap so this is not possible for me. What other things should I be accessing? I seem to remember travel sickness pills being mentioned.

It is a great achievement that he has agreed to prescribe the buprenorphine however I am very anxious since everything I have done to try and improve my restless legs over the last three years has made them eventually worse.

Any advice or information regarding the above issues would be greatly received! Thankyou Dawn

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Drls
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27 Replies
LotteM profile image
LotteM

Hi Dawn, I made the swich from oxycodon to buprenorphine. Initially to bup pills, and later to a patch. The 5mcg/h patch has successfully covered my RLS for the past almost 2.5 years. Only occasionally I need something extra: often but not always on the 7th night, after a day of lots of exercise are the main issues for needing something extra. I also have Temgesic (0.2mg) pills and half a pill suffices. Alternatively, I may take 1:4-1/4 tsp of kratom, red or green.

The thing is: what (daily) dosis of oxycodon do/did you take? I was on 10-20mg. So the switch to 5mcg/h patch bup worked for me.

Combining the two: the buprenorphine may block the action of the oxycodon, but I am not sure of that. Just see and try. Also, paracetamol is often used to potentiate opioids, so adding it in - if needed - may also help.

Don't be anxious, just try. If you still have symptoms on the 5mcg/h patch, they will quite surely be reduced compared to full-blown symptoms. So you'll survive. Make sue you keep a simple diary of what you take and what symptoms you do experience - maybe none!

Wishing you good luck with this medicine change. I really hope it works as well for you as it does for me.

Drls profile image
Drls in reply to LotteM

Thank you Lotte! That’s is such a lovely reply! I have been taking a total of 20mg oxy, 15 split through the night and 5 in the afternoon. That’s a really good idea about using paracetamol - I’ll get some in.

I’m wondering if you experienced the sickness?? I’m trying to prepare for the first week.

I’ll try not to be nervous but like many of us I am very beaten down - in any event I will keep the forum updated

Dawn

Knittingasweater profile image
Knittingasweater in reply to Drls

it is shocking to me that your gps prescribe all you guys opioids , I know my RLS is caused by a dopamine deficiency and have pleaded with my dr to prescribe me a mild opioid for relief , she refuses.. infact all 3 drs I’ve seen refuse , so I suffer.. I live in Canada and it seems opioids are only prescribed for severe pain due to cancer or evasive surgery 🤷‍♀️

Drls profile image
Drls in reply to Knittingasweater

Hello - I only just saw this - I really feel for you - it is awful how we are ignored and left to suffer - my GP was completely anti any opioids and didn’t support me with any help with medication at all - however when I fell over and broke my foot in three places due to complete exhaustion he reluctantly prescribed Targinact which is licensed for RLS here in the UK - this has not worked for me so I have been trying to access buprenorphine to trial which is a much safer opioid - all I can say is keep trying and don’t give up. I know my GP finds me very challenging and it is exhausting but i don’t see what choice we have - I really wish you the best of luck and hope someone listens to you soon x

SueJohnson profile image
SueJohnson in reply to Knittingasweater

You might want to copy the appropriate section of the Mayo Clinic Updated Algorithm on RLS and show it to him to show that opioids can be quite effective and are safe for RLS patients at Https://mayoclinicproceedings.org/a... Canadian doctors hopefully are more likely to take US advice than UK ones.

Drls profile image
Drls in reply to LotteM

I should also say I am still on 150 mg pregabalin as well which does help to some extent so I’m hoping that between the two I will be covered .

LotteM profile image
LotteM in reply to Drls

I assume you can remain on the pregabalin.

And no, I didn't experience any sickness. And yes, I understand where you are. I find my tolerance to the -few and far between- breakthrough symptoms have greatly reduced compared to when my symptoms were badly controlled. Even though I have been sleeping well for some three years now.

Joolsg profile image
Joolsg

bicyclehealth.com/suboxone-....

It's NOT a good idea to take other opioids with Buprenorphine. Quite a few articles on it so I'm surprised your GP is unaware of it.

As Lotte has advised, you should be fine with the 5mcg patch and you shouldn't experience withdrawal from 20mg Oxycontin.

Some do mention that the patch 'runs out' after 4 days instead of covering the 5/7 days, but hopefully that won't happen.

As for nausea, it's annoying that your GP 'won't support' you. Will he refuse to release your records to the private clinic???

He can't stop you applying though and you can explain that your GP is anti cannabis.

Alternative anti nausea remedies are Kwells sea sickness tablets, eating ginger and raw celery. The nausea, if it hits, tends to settle after 7 to 10 days, so hopefully you will manage.

It's great that your GP has agreed to the patch and I really hope it works for you.

Nanpat profile image
Nanpat in reply to Joolsg

my pain specialist in hospital put me on oxycodone knowing I was on the 10mg patch, are you sure it’s not advisable? He is a very well respected dr.

Where can I read articles to the contrary?

Joolsg profile image
Joolsg in reply to Nanpat

ncbi.nlm.nih.gov/books/NBK4....

ncbi.nlm.nih.gov/pmc/articl....

Oxycodone is a full opioid agonist so the advice is not to take it with Buprenorphine as it can cause opioid withdrawal symptoms. One of those is severe RLS.

Most doctors are not so good with drug interactions.

I would mention it to your GP.

Drls profile image
Drls in reply to Joolsg

yes interesting! What I don’t want is more restless leg symptoms - to be honest I have found oxycodone such a scary drug that has affected me so severely I don’t want to be on it at all and will be very relieved to be off of it x

Ephemera profile image
Ephemera in reply to Drls

Can I ask what was the problem with the Oxycodone. My husband has started taking it and all is well at the moment. Should I be aware of any side effects?

Drls profile image
Drls in reply to Ephemera

hello ephemera, if your husband is doing well on oxycodone then that’s great! I had terrible break through rls with increased leg movements from the minute I started it… so it never worked for me. I think whatever works for people is right for them - everyone is different - im really pleased your husband has found some peace, I hope it continues x

Ephemera profile image
Ephemera in reply to Drls

I hope you make at least one of your daughter’s weddings. Our daughter is getting married in June and it is a 5hr journey and a night away from home which my husband is worried about. We will have to stop many times on the drive up. Good Luck 👍

Drls profile image
Drls in reply to Ephemera

thanks - good luck to you both as well x

Nanpat profile image
Nanpat in reply to Joolsg

Thanks for reply, I will mention to my gp who finds me a challenge 😒whereas the pain Dr was very familiar with rls. It is my emergency go to as it stops my symptoms quickly.

What do you think I could take instead on those unbearable nights?

Thanks

Joolsg profile image
Joolsg in reply to Nanpat

If it stops your symptoms quickly and is not causing the opioid withdrawal mentioned in the articles, then continue to use it.I suspect that, as you're on the Buprenorphine patch, it's losing effectiveness before the expiry date. So if it's a 5 day patch, it only lasts 3 days. Several people have reported this.

Keep a diary and a record of exactly when you get breakthrough RLS.

Then show to your doctor and discuss either a switch to Buprenorphine pills, taken only at night, or replacing the patch earlier.

It's often trial and error in finding the right dose and timing.

Opie__ profile image
Opie__ in reply to Joolsg

Heard if you want to know about durgs and interactions, ask your pharmacist not your physician.

Joolsg profile image
Joolsg in reply to Opie__

Completely agree.

Drls profile image
Drls

hello Jools, I’m wondering if my gp meant for me to use oxy if I have issues with the patch and have to remove it suddenly - that’s the downside of a quick gp call when you’re just coming back from Tesco etc and he is keen to go.

No he won’t release my records for the medical cannabis and the practice do not put them on the nhs app - I started the process with the clinic so i could go back to them and explain.

Yes I feel better having messaged you all and really hope it works even to some extent! I still have my daughters two weddings coming up and really want to make it to Spain x thanks as always for your help x

Joolsg profile image
Joolsg in reply to Drls

Worrying that GPs are under such time constraints. He may well have meant that you could go back on Oxycontin if the patch caused unbearable side effects.Fingers crossed it will work. The nausea doesn't affect everyone.

I developed severe anxiety 4 weeks after starting Buprenorphine but was ready for it as it happened to me on Oxycontin.

I added 25 mg pregabalin and it sorted the problem. As you're on 150mg pregabalin, it should hopefully stop any opioid anxiety.

Drls profile image
Drls

let’s hope so! I’ve got enough to be anxious about anyway without that as well - fingers crossed it will help me - x

Marlayna profile image
Marlayna

thank you for this post and all the answers. I see myself going down the same path soon. Oxy just isnt doing it for me anymore.

Drls profile image
Drls in reply to Marlayna

ok Marlayna, I will keep you all updated as to how I get on….

Shumbah profile image
Shumbah

My advice is persevere , you have the best support team on the planet .

If you feel weird in the head or anything just be prepared to stay in bed and watch TV . The good news is it is very likely your body will be at rest which will enable you this Luxury.

Zofram is good anti nausea if doctor will prescribe , I had Zero nausea however I was also on sublingual .

I think you might be thing of Suboxone which definitely cannot be mixed with other opioids .

So do panic .

My back is absolutely shot, my best friend is my electric blanket for pain very occasionally if I have been on my feet to long and in unmanageable pain I will take panadiene forte or an oxy.

Wishing you goods nights sleep and peace of mind.

Remember to reach out for your support team .

If you find your patch is too strong you might be able to cut it . My daughter used to cut hers when she was on Buprenorphine patches.

She was on it for 2 years until post back surgery and recovery and then she stopped it dead no withdrawal and she was on 15 mcg that real surprised me.

Nanpat profile image
Nanpat

Hi, I think you’ll be fine, I also take pregabalin 75mg, plus 10mg patch.

I also use either codeine or oxycodone as the patch now doesn’t stop all rls. My pain specialist suggested this regime. In saying that I was originally started on 5mg patch and it worked wonderfully for 3 mth, then upped to 10mg which helps but not fully.

Minimal nausea but slow bowel 😊

Drls profile image
Drls in reply to Nanpat

thankyou nanpat, I’m going to call the GP on Monday to clarify when I can take any extra oxycodone but to start with I will just trial the 5mg patch plus the 150 mg pregabalin and see what happens - so many if you have had positive results with the buprenorphine that I am hopeful x

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