A few weeks ago I contacted my pharmacy and asked if they did Buprenorphine and they said they did it tablet form, great news I thought. I made an appointment with one of my doctors who is hopefully one of the better understanding ones at least my wife likes him the best. First question, I'm a bit nervous as I'm not sure what to say as I have a feeling when I mention Buprenorphine he is going to tell me either that he won't/can't prescribe it or he will need to have a meeting with the other doctors. Is there anything I can print out that might give him a better understanding of the drug and tell him that nothing else has helped me and this could help my miserable life. Or just anything I can say to get him to understand. Second question, I've not really looked in to side effects of the drug but I suffer from terrible headaches/migraines and have IBS both handed down to me by my mother. Does Buprenorphine exacerbate headaches or will it affect my stomach?Thanks.
Going to see the doctor about Bupreno... - Restless Legs Syn...
Going to see the doctor about Buprenorphine
We can't say whether Buprenorphine will give you headaches or affect your IBS because we all respond differently to meds.I personally don't get headaches and I don't have IBS so Buprenorphine doesn't make them worse.
You were on Ropinirole, neupro patch and you also tried gabapentin and tramadol and you've been on kratom for years, but it's stopped working.
Have you tried iron therapy? Print off the iron therapy page from RLS-UK and show to doctor. It's under 'useful resources'. Iron infusions resolve the majority of RLS cases.
Buprenorphine is for refractory RLS, so your GP should consider it, but may want a neurologist to back up the prescription.
So write a letter to the GP including some of the following info and put it in your own words.
' I have refractory RLS. I augmented on Ropinirole and Neupro, and tramadol and gabapentin were ineffective.
My RLS is severe and refractory and my quality of life is poor. My mental and physical health are severely affected and I am becoming more depressed.
RLS has the highest suicidal ideation of all other neurological diseases combined. The EARLS 2019 study confirms this.
Buprenorphine is highly effective for RLS at low dose and does not cause addiction ( unless there is a history of abuse) or tolerance. This has been confirmed by Dr Winkelman's opioid study.
A recent American study has shown the effectiveness of Buprenorphine for RLS and RLS-UK are currently trying to find a UK site for trials of Buprenorphine.
neurologyadvisor.com/report...
There are now several members of RLS-UK help forum at HealthUnlocked who are taking Buprenorphine at low dose with miraculous results. They are on low doses of sublingual pills and have not increased the dose.
Would you please consider a one month trial of 0.4mg Buprenorphine to see whether it will help me?
Untreated RLS is unbearable. Dr Thomas Willis, who first diagnosed RLS in London in 1670, described it as like being tortured on 'the Rack'. He was correct.
If my RLS is treated correctly, my mental and physical health and my quality of life will improve immensely.'
You will, of course, have to get off kratom completely. You CANNOT take another opioid with kratom.
If the GP refuses without a recommendation from a neurologist, you can pay privately to see Dr Chris Murphy in Salford. I don't know of any good neurologists in the North East. Dr Kirsty Anderson has made it clear she won't prescribe opioids OR pregabalin.
Hi Joolsg, thank you so much for your help and advice. I managed to get kratom to help again by using different vendors and strains. The problem is it isn't without some side effects (not many) and I can't go abroad as it is illegal in many countries. Without it I don't think I would be here. Kirstie tried had me try an iron infusion even though my levels are really high and it didn't work. She didn't even ask me if it had worked. When I see the doctor on Tuesday I will mention the things you have wrote,
my wife is coming as a backup. Thank you.
First, let me commend you, Jools, on the high quality of your comments here, and how much I appreciate the help you've given us all. But I do have a minor quibble with the use of the phrase "another opioid" as regards kratom. Kratom is a member of the coffee family, not the poppy family.
As Jezee mentions in his following comment: "Without it, I don't think I would be here." I've said the same thing, myself. In fact, as Dr. Buchfuher was prescribing me alpha 2 delta ligands (gabapentin - which turned out to be ineffective for me), he allowed me to continue taking kratom. The problem with kratom is that it is susceptible to tolerance, unlike a regime of low-dose opioids.
Once Dr. B put me on 10mg per day of methadone, 5 years ago, I began to sleep 8 hours every night, to this day. Of course, I no longer use kratom, but it DID allow me to bridge the gap between discovering the immense benefits of low-dose opioids, and finding a doctor willing to prescribe them. Again, Jools, I am SO grateful for your participation in our RLS discussions.
When, a few years back, the FDA in the US tried to "schedule" kratom, the blowback was so severe that they relented - the first time they had ever done so.
Noted. Thanks.However, kratom works on opioid receptors in the brain, so it should NOT be taken alongside other opioids. Buprenorphine pushes other opioids off the opioid receptors and it would very likely do the same with kratom.
It is still illegal here in the UK, but can be sourced from the Netherlands.
Joolsg has given you some excellent advice.
You can also print out the section on opioids from the Mayo Algorithm at Https://mayoclinicproceedings.org/a...
I would definitely print and bring the studies Jules and Sue reference to the appointment. You do not have to produce them but knowing you have proper scientific evidence to support your suggestion should give you confidence and may also convince your GP.
I was dreading mentioning to my GP about buprenorphine but was amazed when he said yes on the spot.Joolsg also suggested I ask him if he would like to read the article by the Mayo Clinic that she sent me so he would be fully abreast & again he said yes.
The only thing he is quite shocked by is that I have lost a stone in weight, especially when I am on such a low dose.
Maybe because it is an opioid.? Who knows? But lots of others on the forum say they too have lost a stone in weight.
My GP wrote to Dr Murphy to ask if he could offer an alternative to the Buprenorphine as he was concerned about addiction - today I had a copy of Chris Murphy’s reply to my GP . Don’t think he will ask again !
SO interested to read Dr Murphy's letter. Thanks so much for sharing that with us.It certainly backs up what many of us feel.
Thanks for sharing Dr. Murphy's letter. And, Dr. Murphy, well said!
I have IBS and am sensitive to many things, but I don’t get problems from Buprenorphine. Sometimes a little bit of a tummy ache an hour or so after ingestion (sub lingual) but it’s transient.
I am a week into buprenorphine, 1mg a day (splitting it in two doses because that is working for me), I feel too nauseous taking it all at the same time but 0.5mg doesn’t cover my 24/7 symptoms. So far it is giving me headaches and migraines, every day so far. I used to get them every so often but it’s been a clear side effect for me so far. The great thing is that I don’t have RLS, it feels like my legs are floating. I am going to continue and hope that the side effects get easier. And as Joolsg said, everyone has a different experience so you might be totally fine!
So sorry about the side effects, until you take them you will never know. Fingers crossed that they will go away. Good luck.
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