Those who have been able to access Buprenorphine understand the complexity of being able keep your supply on going.
On the Friday October 22nd I have my review
in the hope that my medication can be continued.
Please may I ask that anyone who is taking Buprenorphine do an email to me
Even if you have done so before please would you mind doing this again for me.
Outlining your life prior to Buprenorphine
How it has transformed your life
What country you are from
Gender
Age optional
This will help me continue accessing Buprenorphine.
The first time my doctor tried to prescribe Buprenorphine for me he was on the phone and they told him Buprenorphine makes RLS worse He went on to tell her that I was put on it in the USA and that in fact has give total relief.
29 th of October it will be 2 years since I met the compassionate DR Glen Brooks.
The reason I have asked gender for some reason doctors especially male doctors take more notice when a man speaks .
No idea why , it might just be an Australian thing.
If you don’t have my email it’s
kester@aghequip.com.au
You could make a big difference for me
😊
Written by
Shumbah
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Hi Shumbah, Jellybean here. I have been on Buprenorphine patches 7 day 15 mcg. for 16 months after oxycodone started to fail. My doctor would not give me the tablet form and the patches do not give me seven day coverage. Day 6 is always miserable and day 7 after the patch change it takes another 24 hours to get back to full dosage. I am now with another doctor and I am hoping to raise the subject with her to see if I can get the tablet form. Here in UK it is Temgesic and I think with you it may be Subutex. I can hardly believe it is two years from you were with Dr. Glen Brooks who made such a difference to your life.
My story is that I have suffered RLS since childhood and I am now 79 years of age. The last 25 years my RLS has been severe and unrelenting, often starting at 3.00 p.m. and still there at 3.00 a.m, For thirty years I did not get any more than three hours sleep at night. I was allowed codeine 30 mg. at night for many years and this helped but not nearly enough. Four years ago I started oxycodone and this was OK for two years but then the dosage would have needed to be increased. My doctor would not agree to a slight increase to 20 mg. daily but changed me to buprenorphine patches. They have been working really well for my sciatica and restless legs and allowed me much more sleep than when on oxycodone. I would thoroughly recommend this treatment as it has given me a better quality of life.
I hope this helps you to get the treatment you so desperately need to continue. Unfortunately I have developed blood cancer and because of this my haemoglobin and other blood constituents require to be kept low so and I am now experiencing breakthrough RLS. At present this is not too bad. I have to take oral chemotherapy daily for life but am managing pretty well with this. I know you have had some bad health problems and I wish you well and hope you can manage to get your much needed prescription sorted. You have been such a help to so many of us. Thank you again.
God bless you jelbea , I am very grateful for your response , I will pray for you on the next journey.We to have Temgesic in Australia and it works well for a lot of people but it does not add 24 hour coverage , Subutex does .
However if they would allow you to add Temgesic to your match it could be a match made in heaven .
Temgesic is microdose so very tiny amount however it would work well with your patch . To bu used for break through just one and a few more as required on day 7
Jelbea, I get buprenorphine in the UK. There are 3 companies that make it. Accord, Sandoz and Morningside. They come in 0.4mg and 0.8mg pills of buprenorphine hydrochloride. They are sub lingual tablets and must be dissolved under the tongue to be effective. Temgesic is available in 0.2mg pills. It sounds like you would be better off asking for the temgesic. If your GP is prepared to prescribe it in patch form, why on earth would he refuse in tablet form? I can only assume he/she thinks you may take more than the 0.2mg a night, in which case you could ask him to give you weekly supplies and review after a month.Prof. Chaudhuri has said he will do trials of buprenorphine if I can raise the £100,000 funds. If randomised controlled trials are carried out successfully in the UK, buprenorphine can then be licensed for RLS and GPs would be able to prescribe it without worrying about any legal consequences.
I really hope your GP listens to you and considers your suffering. Fingers crossed.
Alternatively, I know Dr Guy Leschziner at Guys has prescribed it to private patients if you can afford to see him privately.
That's very kind Jumpey. I will raise the fundraising with RLS UK as it should ideally be done officially through the charity.I'm looking at pharmaceutical companies that award grants as well.
I'll keep you updated on fundraising. We may set up some sort of crowd funding. It'll be interesting trying to reach the many people who suffer from RLS but are unaware of help sites or this charity. If 1 million have it and everyone gave a pound, we'd have more than enough!
Hi Shumbab, very good luck with your prescription renewal.
I recently posted because I tried it but the starting dose was too high for me at 2mg and it was an overdose. I've been too scared to try it since.
I suffer with wakefulness on opiods and another worry is what I could take to counteract that given I can't use Gabapentin or Pregabalin, and I was told no sleeping pills with it. So I'm stuck on Tramadol, codeine, sleeping pills and THC and I still don't sleep.
Hi Sampsie I have read your post to Shumbah and note that you took 2 mg. of buprenorphine. I think Shumbah takes Subutex which is buprenorphine. I am in UK and at present on buprenorphine 7 day patches. My doctor would not give me the tablet form. You will see that some of the other members take Temgesic which is buprenorphine in tablet form. The tablets are 0.2 and 0.4 mg. strength which is a much lower strength than Shumbah. My patch of buprenorphine delivers between 0.2 and 0.4 mg. daily so I am not surprised you got an overdose. What country are you in? This dose has been working well for me and seems to be OK for other members. Hope this information helps.
I'm in the UK. I can't have the patch because my weight is too low, but I will certainly ask about Temgesic. Mine are Subutex and they are hard to cut up. I got a pill cutter after Jools suggested one, but they just crumble so you can't tell what you are taking.
Hi Sampsie, I have the same problem with opioid-induced insomnia, but it happens after four years on oxycodone, so my doctor don't think that the insomnia is caused by oxycodone instead I was diagnosed as having anxiety-induced insomnia. What kind of opioid are you taking and when your insomnia starts after taking opioid. Xanax don't relieve my sleeplessness and neither THC which only makes me more nervousness. Thanks for your response, I'd appreciate it very much.
Other members here have also mentioned issues with wakefulness on opiates. There is a study someone pointed out about this, and I think it might be this one:
My memory has got so bad from years of no sleep that I really can't remember now if I had this issue on Oxycodone but I'm thinking I did. I get it on Tramadol, and sometimes on codeine. When I took the buprenorphine I was awake for 48 hours. The thing that helped was taking gabapentin with the opioid to counteract the wakefulness, 300mg, but I can't tolerate it anymore. I think Jools takes a small dose of Pregabalin to counteract her wakefulness - search her posts. Annoyingly I can't take that either. I find that I usually wake about 2 hours after being asleep on Tramadol or codeine and then can't sleep for another 4 hours or so, like tonight. I seem to recall when I took Oxycodone I just couldn't get to sleep for about 4 hours after I took it, but then I did sleep once I fell asleep.
I think I probably do have anxiety induced by the optiates. And I also think I have insomnia from years of not sleeping, on top of the RLS.
Absolutely wiped out my memory I truly was on the verge of needing to be in care at the sweet young age of 57
Buprenorphine is different and hangs onto less receptors
One thing that really helps aid the depth of sleep is a particular CBD I buy
NOT all are quality
I have it hand made ZERO THC and she has a special freight forwarder she sends it through I have no issue getting it through customs because it’s labelled as face oil. I actually buy a few bottles at a time and have a big swig out of the bottle. It really is noticeable.
I can send her email dates to anyone wanting a private order it is beautiful quality and not over priced.
Hi I’ve been on Temgesic 0.2 sublingual x 2 yrs now with pretty much complete relief. I find it’s quick acting and short lasting. After years of torment I feel great and sleep well every night. I’m from Ireland. Female. Best of luck to you 🤞🙏
Hi Poppip, can I just ask whereabouts in Ireland you are? I think probably Temgesic is going to be the only option for my partner. He seems to be suffering from Refractory RLS after augmenting on Miraprexin. He's now on 600mg of Pregabalin which is doing nothing. In fact if augmentation on Pregabalin is possible that is what is happening. I think it will be difficult to persuade the GP that he needs to look at something different.
I saw Neurologist Seàn O Sullivan CUH but he only wanted to prescribe dopamine agonists. Then I saw Prof OKeeffe in Merlin Park Galway. He is a Gerontologist with a special interest in RLS. Lovely man who listened and took a great interest. He suggested opioids, but I wasn’t ready at that time. I have since started the Temgesic and honestly it’s been life changing .
Thank you so much. That is really helpful. I'm not sure how long we will have to wait for an appt but at least if we are waiting for someone who might be able to help it would be something. I'm so glad things are working out for you now.
Hello Shumbah, I am a female, 75 years of age and have had heavy RLS for appr. 25 years. I have tried everything: Pramipexol, Neupro patches, Pregabalin, Gabapentin and only Temgesic 0,2 mg, sublingual tablet, gives me wonderful relief. I have been taking it for over a year now (200 to 250 mcg per night).
I am from Austria/Vienna. Two competent doctors who know me are willing to prescribe and both are glad that I have a better life now.
I hope you can copy and paste it. I cannot find your email address.
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