1 more question?! Maybe more!

[Danni54]

You will all be getting fed up with me ! Today I started the 10 mcg Buprenorphine patch...changed from 12 mcg Fentanyl patch which didn't do much for pain and definitely nothing for the rls ! How long, approximately, does it take for Buprenorphine to kick in and start to help....hopefully? I wasn't well yesterday, spent half the day in bed but my leg's were bad but I managed to sleep for a couple of hour's. Today I walked, slowly, for about 35 minutes in the wood's and tonight my leg's are so tight , sore and creepy....and cold. I push myself to walk 3 or so times a week despite the fractured vertebrae and stomach pain + because I thought that would help and I used to walk every day before the cancer misdiagnosis. It doesn't help the rls at all but I need to keep walking as part of 1 lung was removed. I'm praying that the Buprenorphine will start to work in a few day's. Have also been taking Magnesium but tonight my leg's are driving me crazy. Thank you to everybody for your previous advice. Take care.

[SueJohnson]

Since you are sick, that increases inflammation which increases RLS. I so sorry you are suffering so.

[Danni54 in reply to SueJohnson]

Thank you Sue. I really hope that thing's are not too bad for you. I have been so grateful for your information and support. You have helped so many people including myself. Thank goodness for this forum! Wishing you all the best for the New Year and to all those who have been there with help and advice. Jools has also been wonderful so best wishes to all of you. Danni x

[SueJohnson in reply to Danni54]

I am fortunate that gabapentin controls my RLS. Best wishes to you too.

[davchar23 in reply to SueJohnson]

Sue,

I noted that you only take gabapentin to control your restless legs. Does that mean that you haven't been through augmentation from DAs? I would appreciate your clarification on the following:-

I thought that after augmentation the target was to get a person's Dopamine receptors back to as near "default position" as possible? To do this two "barriers" to RLS are often deployed namely a low dose opioid (in my case 10mg buprenorphine patches) and gabapentin (in my case pregabalin). I understand that buprenorphine blocks other barriers eg pregabalin? I am trying to eliminate pregabalin (very slowly) due to bad side effects (mainly balance issues) and I am now down to 100mg per day (one dose late evening).

I would appreciate your clarification/comments please

Kind regards

Davchar

[SueJohnson in reply to davchar23]

I augmented on ropinirole and was then put on gabapentin. Buprenorphine blocks other opioids. It does not block gabapentin nor pregabalin.

[davchar23 in reply to SueJohnson]

Sue,

Thanks your reply. Sorry but one more clarification please. I know that opioids such as oxycodone or buprenorphine are in effect powerful pain killers and therefore effectively drown out RLS aches and pains but I didn't think that gabapentin was a painkiller and I wondered how it actually works as a barrier to RLS pain in accordance with the Dr Earley "model" but perhaps nobody knows?

My concern is that I might not be helping my situation by trying to eliminate pregabalin?

Davchar

[SueJohnson in reply to davchar23]

Pregabalin and gabapentin are actually used for nerve pain.

Glutamate is found in abnormally high levels in the brains of people with RLS. Gabapentin reduces glutamate levels in the brain.

[davchar23 in reply to SueJohnson]

Sue,

Presumably the same for pregabalin? Is glutamate a product of sugar and is that why pregabalin affects balance?

Davchar

[SueJohnson in reply to davchar23]

No it is not a product of sugar.

[Purpleyam in reply to SueJohnson]

I also wanted to understand how Gabapentin helps rls. I am now taking a total 800 mg Gaba in 2 separate doses as recommended. Plus a 25 mg dose of Tramadol. Is there ever going to be a time when I no longer require the Tramadol? My GP does not want me taking it long term (even though I only take half the recommended starting dose). Just wondering if you still take an opioid with your Gabapentin. Thanks

[SueJohnson in reply to Purpleyam]

I am lucky enough not to need an opioid. The gabapentin controls it completely. You may not need tramadol if you're not having side effects you can't live with on the gabapentin and you increase your dose. 800 mg is still a low dose.

[LotteM]

I am on the buprenorphine patch too. The leaflet says to take additional (pain) medication the first 12h. This is because it takes time for the buprenorphine to build up in the system the first time you use the patch. It should start working some time this first night (if you put it on in the morning) or tomorrow (if you put it on towards the evening). I do hope it t helps.

10mcg/h is still a low dose for many, but you can only evaluated after about 3 d whether this dose suffices for you, as it takes that amount of time to reach highest levels in your system.

[Danni54 in reply to LotteM]

Thank you for that. I have just had the worst, most painful night with my leg's which unfortunately doesn't help with the other pain's that I have and I'm just exhausted. I have Oramorph so I might try a small amount of that. Of course, I can't phone the Surgery till next Wednesday because of New Year. I know that I will have to give it a bit of time to see whether this dosage will work for me. Thank you again. I hope the New Year will be good to you. Best wishes. Danni

[SueJohnson in reply to Danni54]

Jelbe is right. Buprenorphine will block other opioids.

[Nanpat in reply to SueJohnson]

what do you actually mean by blocks? Now that my Bup patch is becoming less effective and I’m having some horrendous nights the only thing that finally settles my legs is oxycodone.

So is seems it doesn’t block other opioids for everyone?

I also seem to be suffering augmentation with the patch, worked amazingly to begin with , but now my symptoms are more frequent and more severe.

[SueJohnson in reply to Nanpat]

I think this explains it best: RLSofmanyYears emailed Dr Buchfuhrer a renowned RLS expert, and his reply was buprenorphine products bind very strongly to the opioid mu (Pain) receptor and block the action of regular opioids making them less effective or ineffective). It blocks other opioids reaching the opioid & pain receptors. That's why it's used to get people off heroin.

In your case it is making them less effective but not ineffective.

[Nanpat in reply to SueJohnson]

Hi, just wondering what you would suggest I try now? My gp doesn’t know what will help.

Targin was very effective for 3 mths then I had to add in endone occasionally. I then went on the patch which worked same, wonderful to begin with

My ferritin is adequate for rls needs, I also take 50mg of lyrica. Gabapentin didn’t help. Is it worth me trying targin again or another opioid? I have no obvious triggers, what aggravates one day doesn’t another……no rhyme or reason to it at all

I’m really at a loose end now as to what to do? Or just keep on adding in endone as needed? I tried Bup tablets at night but had terrible withdrawal in daytime as I’ve been on opioids 24/7 for so long.

Any advice appreciated

[SueJohnson in reply to Nanpat]

I'm not an expert on opioids. I would suggest you make a post on this and maybe someone else on the forum might have some suggestions for you.

[Simkin]

I was advised by several of our members that Buprenorphine patches were not very efficient so I went straight onto the tablets and I found the tablets kicked in immediately.

[Jelbea]

I am no expert here at all so maybe someone else will read this and help you. I do not think you can take other opioids with buprenorphine as the bup cancels their effect.

I do hope you will get help very soon as you are obviously suffering very much.

[Nanpat in reply to Jelbea]

hi, I take oxycodone as it is the only thing that settles my legs when having a bad bout, am on Bup patch. Doesn’t block opioids for me