Back again!!

[Danni54]

I have been on here a few times and Jools and Sue saved my sanity! Other's have also been so kind so, thank you...again! I do have another question which I'm sure Jools and Sue can help me with. The 20 mcg Buprenorphine patch has helped my RLS hugely though I know it's lurking but I can now sleep which is amazing! However, my skin is having a bad allergic reaction to the gum on the patch so I let the Dr. know but she wouldn't prescribe the pill's until I spoke to the Pain Clinic Specialist Nurse. Thank goodness she has now advised the Dr. that I do need the Buprenorphine pill's equivalent to the patch! My question is...do they work as well as the patches or better? The other thing that happened with the patch was that it ran out a couple of day's before I had to change it and I started to get withdrawal which was horrible and reminiscent of when they stopped my Dipipanone with nothing to replace it ! Can I expect anything different with the pill's? At least they won't wear off!

I think about all of you often and I hope you are all coping. RLS is , still, so under recognised and is the most horrible thing to live with. If there is anything I can do Jools , please let me know. I am trying to ' educate ' our G.P.'s but it's an uphill struggle! Take care please and thank you again Jools and Sue for your help and advice.

All the very best xx

[Joolsg]

I'm on Buprenorphine pills. 0.4mg at night, taken 0.2mg at 9pm and 0.2mg at midnight. They work for me 24/7. I've never increased the dose in the 3 years I've been taking it.I have never used the patch, so can't comment on it. However, a few others have also said it runs out at day 4 or 5.

I did get nausea for the first 10 days, but as you've been on Buprenorphine for some time, you shouldn't experience it by switching to pill form.

Good luck. Let us know how you get on.

[FLAME43]

Totally agree

[707twitcher]

Sublingual pills (or strips) worked fine for me. I recently switched to the patch to see if that reduced my constipation, which it did. The sublinguals are far more flexible in that they take effect quickly (30-60 minutes for me), so it’s easy to add more if needed. If you mainly have symptoms at night, take it an hour or two before bed. There were times when I needed it if I wanted an afternoon nap, and taking it around noon lasted me until the following night.

Because of the long half-life (30 hours plus), it stays in your system a long time (obviously with waning effectiveness as time passes). If you are adjusting doses regularly, keep in mind that the effect you are getting at any moment is somewhat the result of everything you’ve taken over the last week. Not a problem, just give it time to stabilize before you conclude you’ve got the optimal dose.

If the 20mcg patch is working for you, the sublingual equivalent would be 1.2 mg or so. But maybe start at lower dose since you can add extra if needed - as long as you can add small amounts if you have .2mg pills or you can cut them if you have larger ones.

[Danni54 in reply to 707twitcher]

Hi. Sorry not to have written sooner but I fell....no broken bones thank goodness but I am bruised ! I wish that I could get a prescription for the pill's but there seems to be a problem prescribing them here which seems stupid to me when I have 20 mcg patches! I see my Dr. on Wednesday so I will, politely, growl! My skin is itching wherever the patches have been despite the Dr. giving me a Steroid spray and my skin is so red and blotchy.I know the NHS is on it's knee's but I don't understand the lack of care or wanting to learn from a lot of Dr.s and Consultant's. I have no faith in them any more but that's a long story. Nurses I have met have been wonderful and I think they are amazing as are the people here. I hope that you aren't suffering. Take care and all the best.

[Marzipana]

I agree that this is an amazing community! I've learned more here in about 6 weeks than I ever learned from my doctors in 25 years! It is also such a huge help knowing that all of you understand the frustration of living with a disorder people without it don't understand.

[Danni54 in reply to Marzipana]

Hi. I , absolutely, agree. My Dr.s and Specialist Nurse are just not interested in learning about RLS .I am having such a battle with them to change my Buprenorphine patch to tablet's because I have terrible itching and red lumps from an allergy to the gum on the patch but they are reluctant to prescribe the tablet's! I sent a photo of the rash to my Specialist Nurse and all she could say was that it looks painful and she will speak to her Consultant. That was 4 day's ago and the itch is driving me insane! I had never heard of Buprenorphine until I came here and I have been incredibly depressed with the RLS and don't know what I would have done without the advice and knowledge of people here and I will be forever grateful. Buprenorphine is the only medication that has helped my leg's and allowed me to get some sleep. Now all I need to do is find a medic who will listen to me and follow the link's I have given them! I see a senior Dr. on Wednesday and I have asked to see a Neurologist at our hopeless hospital!! I will take leaflets etc. about RLS with me but ......!

Good luck and best wishes, Danni

[Marzipana in reply to Danni54]

Thank you Danni. I hope that your quest to get relief from Buprenorphine in pills/capsules rather than the torturous patch!