Temgesic success : After 20 years of... - Restless Legs Syn...

Restless Legs Syndrome

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Temgesic success

rkatt
rkatt

After 20 years of nightly hell, my painful, super-destructive RLS has been relieved by Temgesic/Buphrenporphine.

I posted a few months ago how my GP (physician) was willing but my neurologist refused to authorise. I contacted a private neurologist, who agreed to prescribe ... and the drug worked! Wow. I'd given up by this time because everything had failed – gabas, Pramipexole, Oxycodone. I was a traumatised, terrorised. Even Tramadol, cannabis, whisky and Kratom had lost whatever effectiveness they'd had.

A routine appointment with my NHS neurologist came up last month and this time, hearing about my success, he said it was a no-brainer to authorise my GP to go with Temgesic. He revealed that the pharmacy at his hospital is totally resistant to prescribing this drug – that was the basis of his refusal. Now he'll try it on his patients and try to pressure the pharmacy to change tune, he said.

No way was this the end of the story. The medical authority in my borough of London refused to allow my GP to prescribe even with the neurologist's say-so. They wanted to get in on the torture, to have their go at kicking my head, and who can blame them as it must be terrible to be a frustrated sadist. My GP wasn't having it, however. She'd taken in everything I and my wife and told her about my condition. In the end they told her it was okay, as long as I pick up the drug from the chemist every week, not every month. So, she's a total medical hero (also a ray of sunshine).

Last night I slept 8 hours straight, recorded as 90% on my sleep app. Salvation.

28 Replies

Thanks for posting rkatt. And congratulations with your success. It is still early days, for most of us on Temgesic/buprenorphine and we can only hope it lasts.

I am sorry to read about the difficulties you encountered but applaud your gp. Opioids are old drugs, although the (semi)chemical ones are still relatively new. No news to us, but it seems there is still a lot to learn about these newer opioids and - we sound like a record on repeat - the doctors, gps and specialists alike urgently need to be educated.

May I ask what dose you take and when? As you (may) know, I am keeping a list.

rkatt
rkatt in reply to LotteM

Lotte I take 200 mcg an hour before I go to bed. I have severe spasms for a while, but they subside quickly.

Shumbah
Shumbah in reply to LotteM

Working on it Lotte

Absolutely fantastic. Which London Borough are you in? Prof Chaudhuri has said he won't object to buprenorphine but he won't prescribe it - my GP has to agree. I won't stand a chance if my Borough also refuses!We need to shout and scream and get the message out to UK doctors about Temgesic.

rkatt
rkatt in reply to Joolsg

Camden, Jools. My GP had to take responsibility, which I think means if I cop it due to an overdose or whatever she carries the can. What a hero. I admire her so much. I hope you get a prescription. I hear it doesn't work for everyone, but for me it's a doorway back to my life. I heard the Mayo Clinic will soon publish a paper on Temgesic? If so, it should help.

Joolsg
Joolsg in reply to rkatt

Thanks. I'm in Merton. Yes my neurologist said the same thing. My GP has to take full responsibility for prescribing. Aagh- I never see the same GP twice at my surgery so that will be interesting. Educating a GP about RLS and opioids in a 10 minute slot.

That's really good news. I'm so pleased for you and long may your relief continue! I was very fortunate in that after persuading my consultant, as a last resort, for me to try Temgesic, he agreed that I could. My GP had no objection either and I was able to pick up my prescription from my local pharmacy. My box of pills does state "as per consultant's advice". I guess my GP surgery are covering their backsides!

"as per consultants advice" is normal ' cya' protocol for drs prescribing opiates. And that's perfectly understandable.What really gets my goat ( rant alert) is pharmacists who take the holier than ye attitude about dispensing medications that doctors and even expensive consultants prescribe. What gives them this 'God' attitude?? They do it with life ending drugs in USA, agreed to by court orders, as well as opiates in the afore mentioned post.

Do they have such concerns with selling beauty products based on animal trials? Or dubious supplements produced by big pharma.? I bet you - NOT! Or,in Ireland, contraceptive devices? God forbid!😝

Ok- rant over.

Wphew- I feel so much better!😁

rkatt
rkatt in reply to Madlegs1

Rant on. I like it. Agree with what you say. Grrr.

rkatt
rkatt in reply to rls-insomniac

Brilliant. How amazing though, that in one part of the country you meet few obstacles, in another you have to be a contortionist to get through the hoops.

rkatt
rkatt in reply to rls-insomniac

That's truly amazing, and brilliant! And lucky. How odd that it's so different in different areas.

I forgot to ask- is the private neuro the one from Guys or is that your usual NHS neurologist?

rkatt
rkatt in reply to Joolsg

The guy from Guys (if you catch my drift) is my NHS neurologist. I was hostile to him when he turned down my GPs request, but in my phone interview he was super friendly and clear headed. I changed my mind about him - he's good. The private GP was Dr Reddy. He was excellent too. Nice man – efficient, professional. When I mentioned HA and Dr Buchfuhrer he was immediately onside.

I'm really pleased to hear that you've managed to get Temgesic. I had no problem getting a prescription here in Scotland - it may be because my GP was already aware of the use of Temgesic (in palliative care). It has made such a difference to my life and after years of augmentation and sleepless nights I can now generally sleep right through. It's amazing just how effective it has been: it's stopped the RLS in its tracks - bang!

rkatt
rkatt in reply to RLSofManyYears

That's wonderful. And so good you didn't have to go through hoops

Thanks so much for posting this! I have video appointment tomorrow with an RLS Specialist here in Georgia, USA and I am adding that to my list of things to beg to try, rather than slitting my wrists! So tired of Doctors not understanding the agony we go through every single night. Thanks!!!!

rkatt
rkatt in reply to Rwall

Good luck!!!!

KickininAz
KickininAz in reply to Rwall

I also live in the US and I am wondering how your visit to the doctor went? Did you begin taking a medication in the opioid family? If so, is it working? I am still taking ropinerole, still augmenting, but will see the doctor next week. I would like to share with him any new (to him) treatments that actually work and do not end up in augmentation.

I'm so glad to hear of your relief! I know what hell RLS is. My biggest concern about the temgesic is that its an opioid. What are the effects of long term usage? I wish there was something that was not an opioid that would work as well! I'm tempted to give it a try though. RLS woke me up last might at 3 am and I never did go back to sleep and nothing I tried worked to alleviate it. I'm a wreck today.

Joolsg
Joolsg in reply to Notlikinthis

Opioids were the first drug used to treat RLS in 1600's England. Dr Willis ( WillisEkbom disease).Opioids at low dose are safe & effective and much better than dopamine agonists.

I attach the 5 year opioid study by Dr Winkelman from Massachussetts General hospital in the US. Too many scare stories have resulted in RLS patients suffering terribly.

massgeneral.org/rls-registry

rkatt
rkatt in reply to Joolsg

Agree 100 per cent

KickininAz
KickininAz in reply to Joolsg

Thank you Joolsg. I have printed this article to take with me to my doctor next week. I do have one concern with opioids, hopefully unfounded. I also have sleep apnea and use a CPAP machine. I have a slight concern that an opioid might sedate me so that I stop breathing altogether. Just a phobia of mine. If you have ever wakened up in the night gasping for air because your sleep apnea is closing your airway, you might understand that particular phobia.

I’m so happy you were able to find/get something that works for you. I hope the reprieve lasts a long while!

I am absolutley thrilled for you .My Gp reads and scans all these Buprenorphine good news stories into my medical file for evidence and then forwads it to my Specialist.

The stories blow his mind.

rkatt
rkatt in reply to Shumbah

Thanks so much!!! It's so important the news about Temgesic gets around.

It's so good that you have such a caring GP who looks after your well being. Especially as you've had such a battle in the past to get the treatment that you so needed. What a wonderful world it would be if all GP's were like this!

rkatt
rkatt in reply to rls-insomniac

Absolutely. She's a gift.

So good to hear the Buphrenporphine worked!!!!! Once the insurance approves the medicine, I will begin a low does of that as well. He also wants to put me on Horizant and not take the Gabepentin. Hopefully, I will get those both approved soon, though I am not sure I want to try both to begin with. What do you suggest!

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