Buprenorphine Problems

[Gonzo123]

I managed to change GP's and am now on Buprenorphine having weened myself off Ropinerole Patches.

I am having terrible trouble with Breathlessness, Aches in my Chest and tingling sensation in my fingertips, and a feeling of giddiness.

I looked up the side effects and breathlessness and chest ache and giddiness are mentioned.

I had to go to A&E the other night because I thought I was having a heart attack, but that turned out not to be the case, but this breathlessness frightened me to death.

I went back to my GP and he suggested reducing the Buprenorphine gradually with the aim of stopping them altogether. He didnt mention what I would do with treatment when I come off Buprenorphine. He is not the easiest of Doctors to talk to.

I really felt suicidal last night because for some reason my restless legs were worse than I have ever had and find life unbearable.

Can anyone suggest a Private Consultant Neurologist I can contact.

I have seen Dr Fackrell in the past but wondered if there is someone else I could try.

[Joolsg]

What dose are you? Are you on sub lingual pills?It sounds like panic attacks.

I had exactly that when I started Buprenorphine.

It stopped all RLS but caused terrible anxiety/panic.

If A& E ruled out anything sinister- it is looking more like opioid induced panic. Very common.

I added a small dose of pregabalin on the advice of Dr Buchfuhrer (he answered my email).

50mg pregabalin at night completely stopped the problem.

I suspect the RLS was bad because you are stressed and stress triggers RLS.

Dr Fackrell is one of the few good doctors. There's also Dr Oliver Bernath at East Grinstead.

[Gonzo123 in reply to Joolsg]

200 microgram and and sub lingual. I am taking 3 a day but told to reduce to 2. What is your advice please. I was panicking when getting breathless.

[Huntingleroy in reply to Gonzo123]

Hi , I take 0.4 sublingual Bup but I take it all 2hrs before bed. Initially I was breathless and a bit wobbly walking but that soon settled . Good luck .

[Gonzo123 in reply to Huntingleroy]

Thankyou. Hope my GP doesn’t upset the system now. I am extremely worried about it.

[Joolsg in reply to Gonzo123]

So 600mcg.Why are you taking through the day?

The average UK dose is between 200mcg and 600mcg taken at NIGHT only.

I suggest you drop to 200mcg at night. Then add 200mcg the next night if RLS occurs.

Buprenorphine has a 25 hour half life so you only need to take at night, around 2 hours before bed.

And if the panic continues ask for a small dose of pregabalin (50 to 75mg) or diazepam.

The panic should wear off as your body adjusts to Buprenorphine.

[Gonzo123 in reply to Joolsg]

Thankyou so much Joolsg

[Kiki19801980 in reply to Joolsg]

Any suggestions on how to ween off of Ropinerole? I do not want to NOT be able to sleep at night I am currently on 1.5 mg. I was so excited to see my first nuerosurgeon with help on getting off of DA and he said " oh no, you can never get off of them. You will need to start taking them during the day to have a good quality of life" I started crying because I feel like this cannot be my life.

[Joolsg in reply to Kiki19801980]

Kiki

Your neurosurgeon clearly knows zero about RLS or dopamine agonists.

I suggest you make a new post setting out your history etc.

What other meds are you on? Have you had full iron panel blood tests?

Sadly withdrawal WILL involve at least 2 to 3 weeks of severe suffering. There are only one or two people I'm aware of who didn't get terrible, increased RLS and lack of sleep getting off these drugs.The RLS-UK withdrawal schedule sets it out.

You need to arrange time off to get through withdrawal.

rls-uk.org/useful-resources

But- once off Ropinirole severe augmented RLS will settle.

You start replacement meds 3 to 4 weeks before last 0.25mg dose of Ropinirole.

[SueJohnson in reply to Kiki19801980]

Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations. And as you saw NICE in the last couple of days has changed their recommendation to say gabapentin/pregabalin should be prescribed and not DAs so print that out and take to your doctor

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.

[JustVisiting23 in reply to Joolsg]

I second that. I was astonished recently as to how strong the relationship is between stress and RLS exacerbations.

[Typicallygaslit]

All the advice you’re given is very good. 600 mcg is a lot to be taking all day long, especially if you’re an older person? I’ve been able to get down to about 250 mcg per night, but I take it in parts depending how severe the RLS is that night. So I start with around 200 mcg and then add more if I wake up with symptoms. I get better results if I go to bed soon after taking it. It’s finicky but you have to figure out exactly how much you need. I do this because the substance affects me a lot and interacts with other medications and supplements. The interactions is something to take into account they. can be very serious. I haven’t had your side effects but I’ve had others that point to serotonin syndrome.