Doctors and Buprenorphine, absolutely hopless

[Jezee]

I had a face to face appointment with my doctor 7:45am the other day confirmed by a text. I turned up with my wife for support and they weren't even open. After knocking on the door for 5 minutes the cleaner came to the door and she said they didn't open until 8:30am. She said that I would need to speak to the head receptionist who eventually came to see us outside. Cutting a long story short there was a mix up and I didn't even get an apology when the doctor eventually rang me at 8:45am. He asked what the problem was when he rang and I explained that I would like to see him face to face but he was determined to find out over the phone. I explained about all the other meds not working and told him about Buprenorphine and he said that they do prescribe it but not for restless legs. I told him about all the studies etc and he wasn't really interested. He said that he would contact some neurologists but as I declined to see Dr Kirstie Anderson most other neurologists would probably turn me down. I told him about going private and he said that it might be an option but if they do prescribe Buprenorphine it would cost me for the prescription. The problem is how much is the prescription and the consultant going to cost me. If the consultant does prescribe it do they issue the drug as well or do I get it from my local chemist? I feel like I'm going around in circles. I told the doctor if it wasn't for Kratom I would probably have done away with myself. I have suffered for 47years since I was 10.

[Joolsg]

Not in the least surprised.If you see a neurologist privately, they can recommend that your GP prescribe low dose buprenorphine, but the GP can still refuse.

It's infuriating.

It's happening a few times on here.

Sometimes a detailed email, setting out the research can work, especially if you ask the GP and private neurologist to agree to a 'shared care' arrangement.

HipHop72 had this problem. His GP absolutely refused to prescribe Buprenorphine, despite letters from his neurologist recommending it. In the end, his private neurologist arranged for another neurologist nearby to issue a green form prescription which can be collected in person nearby.

Others have registered with another GP surgery that is willing to prescribe Buprenorphine.

Don't give up.

First see a neurologist privately who is aware of the benefits of Buprenorphine.

Second, ask them to issue a green form NHS prescription.

Third, if this fails, try registering with another GP surgery that will listen to the Neurologist's recommendation.

It is an uphill battle.

[Cmorc in reply to Joolsg]

I’m SO SORRY THATS been your medical experience. I was a practicing Critical Care Specialist here in the US for nearly 25yrsrs, eventually transitioning to hospital admin roles as a chief Medical Officer for the health systems where I worked. Everytime o would hear stories like yours it would break my heart.

My recommendation (if you were HERE) would be to find a reliable Internist nearby that you can talk to, and HOPEFULLY one that will listen to your concerns. These meds required to manage RLS scare many GP’s as they’re unfamiliar with dosing ranges / side effects/ drug-drug interactions. It was a great suggestion if you can get into a neurologist familiar with RLS to map out a realistic plan for your primary doc to follow.

Realize YOU are the one with the disease, and you DESERVE APPROPRIATE CARE! Learn yourself everything you can get your hands on about this doses & the meds used to treat it, so you can recognize and report side effects if& when you experience them. Taking your med history in with you to that first meeting will help, especially if you can realistically report what you’ve been on that helped, didn’t helped, what complications you experienced promoting drug adjustments. Every patient is different - some do well with caffeine, others can’t tolerate it at all! I’m currently with a great doc who listens, we have reasonable discussions and titrate meds over the phone thru his nurse if necessary between visits. I’m currently on Pregabalin 450mg in split doses starting around 6pm; Ambien 5mg at bedtime, and a fairly consistant dose of hydrocodone 10/250 tabs which I break in half, never taking more than three (3) whole tabs daily. That does had been consistent for most of the last 8-10 yrs. I hated Ropinorole, gabapentin I had maxed out my dose on without control of my symptoms prompting the transition to Pregabalin (much more effective for me).

But that’s working today & may not in three months. I can get sleep in 3-4 hour intervals - sometimes longer, sometimes less. Napping is your friend. I find moderate exercise at my local gym helps me - walking on a treadmill, using a stationary bicycle or their rowing machines followed by time in the sauna I’d magnificent when I can do that.

I’m sorry for the rambling reply, but wanted you to know you deserve better treatment than that!!!! Sometimes you can find a young doc that’s willing to learn and grow in his/her I understanding of this disease WITH YOU!

Best wishes, friend

[Joolsg in reply to Cmorc]

I think your reply was meant for jezee.

[Ticki]

I just wanted to say how sorry I am that it takes so much of strength that we don’t have left to fight for our lives, but that is what you have to. you have to fight fight fight and you don’t give up it’s ridiculous. It shouldn’t be this way, but it is, therefore you have to take that baton in your hand and run with it. I just wanna say don’t give up.❤️‍🩹

[intermk]

I too have had trouble with doctors, nurse practitioner's and physician assistants regarding my quest for the elusive Buprenorphine (Bupr) prescription (Rx). I have had a muscle issue in my legs, arms and face that resembles RLS. It hit me one night in 1985 and has been with me 24/7/365 ever since. Been on all the drugs you all have mentioned to no avail, except for pregabalin which worked to some extent but only for about 7 months. A very kind and helpful woman I met on this site referred me to a U.S. doc in New York City. He got me on Bupr and it resolved my problems immediately. However, due to travel restrictions I have lost his services. To visit their offices is a 3 day trip for me which I am no longer able to make. So I have been trying to get my Veterans Administration doc's to write the Rx for me. It's like beating your head against the wall would be more helpful. These folks couldn't care less about the health of veterans. The do the minimum but no more. You can offer all the proof this palnet has to provide but it's a no go with them. "Buprenorphine is not approved for use in RLS patients" I am told constantly. This, despite the fact that I have proven them wrong. I also hear, "Bupr is a very strong pain medicine that you do not need." NO, no it is not. Bupr can't even help with my osteoarthritic knees and back which has stenosis throughout, building disc's and nerve encroachment. It can't help with a headache or any other pains I have on a regular basis. And I'm not asking for this med to use for pain but to stop the nasty, painful sensations and disability of of 10+ RLS symptoms, especially in my arms. So where do you go? What can you do? Here's what I am doing: I made a formal request in writing, like a demand letter. I told them if they didn't write me the Rx for Bupr within the next week that I would initiate legal action under the Federal Tort Claims Act (FTCA) in the U.S. I don't expect this to work but you have to try everything you can or die a miserable, tortured wretch. If you're going to let this disease kill you without trying every legal avenue to get the medical attention and prescriptions you need, then you likely . . . .

[SueJohnson in reply to intermk]

If you tell me the city and state you live in I may be able to provide the name of a doctor who will prescribe buprenorphine.

[intermk in reply to SueJohnson]

I live near Trinidad, Colorado which is in the south-central area through which I-25 passes. I am about 30 miles north of the border of New Mexico. Bupr is widely used in this area but only for drug users trying to quit. How do you happen to know doctors that might prescribe Bupr? thanks, Mark

[SueJohnson in reply to intermk]

I keep a list of doctors that people on the forum have mentioned that they have knowledgable doctors and if they have prescribed opioids. Also there are 12 Quality Care sites in the US who have world renowned doctors but none in Colorado.

SleeplessinDenver. Colorado has a good doctor who prescribes methadone and therefore might prescribe buprenorphine. You might message her to get the name.

Dr. Aaron Haug, HealthONE Neurology Specialists, 499 E Hampden Ave, Ste 360, Englewood, Colorado supposively prescribes opioids.

Neither are near you but most doctors only require you to see them once if that and then will do telehealth appointments after that. And they are closer than a 3 day drive.😀

[intermk in reply to SueJohnson]

Yes, Denver is much closer and therefore, easier for me to get there. I have to go up to Denver from time to time for specialty appt's at the VA med cen. It's a shame that I can't get the VA to prescribe. Thanks

[libraryannie in reply to SueJohnson]

Is anyone on your list practicing in Ogden, UT?

Thank you

[SueJohnson in reply to libraryannie]

Sorry I don't have anyone

[HipHop1972]

Hello Jezebel, a was where you are now and my thoughts are with you. It took me years to get to where I am now after seeing 2 specialists privately each treating RLS. One in Wales who recommended Buprenorphine but couldn’t prescribe it as I didn’t live in Wales. Through a contract on this forum I was directed to another specialist in RLS but my GP continued to refuse to prescribe the buprenorphine patches, I now collect prescription from my consultant and Salford Royal Hospital dispenses a 3 month supply of 7 day patches. So if you can give a general indication of a major town within driving distance then someone on the forum may be able to give you a lead to a Specialist who deals with RLS. Maybe make a call on this forum, you never know

Good luck 🤞 HipHop1972

[Jezee]

Thanks for your advice.

[Jezee]

Just want to say thank you to all who replied and your kind advice. I'm waiting to see if the doctor has managed to get me an appointment with a neurologist. If not I will probably have to go privately. I'm on minimum wage so it will be a struggle but need to do something.