How many mg of Pregabalin will actually work?

[Restless_Man]

Hello everybody,

First post here.

I've got a question about Pregabalin (aka Lyrica). But I'll tell you about my particular RLS problems first.

I've got RLS too. I've had it for a few years but very mildly. I got an RLS "wave" or "attack" once or twice a night. It went away w/ low kicks (I call 'm karate kicks). No problem: given my age I have to go to the bathroom anyway twice a night. It came and went during the year. I was under the impression that during the summer it was worse than in the winter (sunlight?).

A few weeks ago it passed a critical threshold. I couldn't sleep anymore. It came about 6 times a night. Early at night every hour, late at night/early morning 1.5 hours apart or so. It started to wake me in my REM sleep. I have to do muscle exercises in my living room order to get rid of the RLS. Sometimes that helps, mostly not. After that I lay on my bed gasping for air and very, very much awake because of the exercises. It takes 15 minutes to calm down after which I have to fall asleep. Unfortunately I have been falling asleep slowly all my life. So in between of the RLS waves I barely sleep, or not at all.

The sleep depravation got me crazy and extremely "psychologically unstable". I couldn't handle it anymore. I took considerably more Pregabalin than my GP prescribed (see further-on) and luckily it worked.

My General Practitioner (GP) prescribed Pregabalin (aka Lyrica). She started me on the ridiculously low dosage of 25 mg per day. It didn't help. I'm now at 200 mg. The Pregabalin only works for a few days (about 3 to 4) and then I need more. I don't think that she gets how serious this is, even after several appointments. I don't think that my GP knows what Pregabalin is precisely and how much an RLS patient needs of it.

A GP in my country is only allowed to prescribe Pregabalin to a maximum of 300 mg per day. I've come to understand (from the internet) that Pregabalin is dangerously addictive and it destroys people's lives just like Oxicontin does. That's probably why GS's aren't allowed to prescribe more than 300 mg.

I have been referred to a Neurologist of course. But the waiting list is about 3 months (are waiting lists that long in every country?).

If this continues then in a week or two I will be at the max. of 300 mg Pregabalin.

Is there anybody here for who 300 mg Pregabalin per night actually works?

How is this going to end? Pregabalin reminds me of those awful Benzodiazepines (you know: Temazepam, Nitrazepam, etc., those sleeping pills that don't work anymore after a week and that addict like crazy).

I'm afraid that the 300 mg Pregabalin won't work anymore and that I'll become crazy, unstable and suicidal from sleep depravation again. And/or that I'll have a Pregabalin addiction to go with it that'll destroy my life.

Greetings,

Michel

[Rustsmith]

I cannot provide any personal experience about pregabalin because I am one of the fortunate ones for whom gabapentin is effective.

What I can tell you is that pregabalin is essentially an improvement on gabapentin that avoids some of the dosing problems that some people have with gabapentin. Gabapentin is considered to be a very safe medication. I take a fairly large dose of 900mg/day and I had a doctor tell me that the max is 3600 mg. The problem with the higher doses is that it can cause severe sedation and also that it starts to become hard for your body to process it and excrete the excess in the urine. It is also a central nervous system depressant, which means that it can cause issues with breathing at night.

As for addiction, you need to understand that there is a difference between dependence on a medicine and addiction. Addition is a psychological craving for a high that the medicine causes. Addiction can cause you to be willing to steal from or hurt your family members to get your next fix. Dependence is a physical need to get another dose. I have been taking a low dose of methadone for over seven years. During that time, I have never felt that it gave me a high. However, I long ago found that my body is highly dependent upon it. If I miss a dose by about three hours, I begin to experience flu-like symptoms. I have been through methadone withdrawal as well as withdrawal from an anti-depressant. The experiences were very different. I would be willing to go through methadone withdrawal again if there was a reason. On the other hand, I will never, ever take another anti-depressant because that withdrawal experience caused me many problems that lasted for many months.

As for you waiting time to see a neurologist, in the US, the waiting time varies by location but your three month wait is on the low side. I just saw the neurologist that treats my migraine headaches (I see a different neurologist for my RLS). The one I just saw said that she wanted to see me again in four months and had to go to her administrative staff to direct them to give me an appointment, even if they had to specially slide me in between two others. Usually, I have to schedule appointments six months in advance for either one and I have heard others say that they had to book appointments one year out.

Finally, there are four tiers of treatments for RLS. You can read about them in the document that the link in my signature line points to. Pregabalin is tier 2. You should keep in mind that tier 4 are the opioids. They are used at minimal doses for treating RLS and are almost always effective. It is rare for anyone to need any escalation of dose with them. Addiction at the dose used is almost non-existent and anytime there is a concern, the doctor can prescribe Suboxone, which is an combination of an opioid with naloxone (the med used to reverse opioid overdose). For those of us with severe RLS who require an opioid, our biggest problem is the need for monthly refills. The second biggest problems are finding a doctor to prescribe them when our doctor moves or retires and finding pharmacists who don't refuse to do business with us.

[Polar Bear]

I have had RLS for 40 years, for most of those years it has been 24/7. It took many years to finally arrive at a successful (more or less) treatment regime which I've now been on for about 8 years.
I first had the task of weaning off 5mg Ropinerole which was an appallingly high dose and my doctor supported me in this challenge with a prescription for Cocodamol 30/500. At the same time I was suffering from neuropathy and was prescribed Pregabalin which had the benefit of helping with RLS symptoms.
More recently, I saw a neurologist at a Movement Disorder Clinic and to be honest she simply approved of what I was already doing to control my symptoms. Excepting, she upped my Pregabalin dosage and I am now on 300mg x twice daily.
This works for me.
My Cocodamol has never been raised, actually I rarely take the full daily dose. I have never felt next day sleepiness from either Cocodamol or Ropinerole. However, I'm on them for quite a while and perhaps I don't just recall. I am unaware of any negative side effects.

[Stainless]

My GP referred me to a neurologist who put me on 300 mg Pregabalin from the start, but he did understand how bad my RLS is. I was complaining about physical pain in my thighs along with typical RLS symptoms. There didn't seem to be much relief from the pain but I stayed on it last 4 years because I fear getting worse. I take it all at bedtime hoping to get some sleep. I did not know 300 mg was max dose but it does not surprise me. I've been on a max dose of 2 mg Clonazepam for over ten years. Before that I was on as much as 3 mg which worked great because I would take that third one (or half) on bad nights. GP told me new max dose was because of potential effects on respiration while sleeping. At that point I knew if the dose was increased my body would just want more. I'm of the mindset of keeping doses as low as possible but am an example of getting maxed out and afraid to reduce any.

[Polar Bear]

I note the max pregabalin mentioned at 300mg daily.
It would appear to be different here in the UK.
I was taking pregabalin prescribed at 200mg twice daily.
I then attended my Mobility Disorder Doctor who upped the dose to 300mg twice daily.

[Restless_Man]

Thank you for your replies (e-mail notification doesn't seem to work...). Sorry for the late reply.

I'm afraid I'm going to be in big trouble. My GP won't subscribe me more than the 300 mg of Pregabalin and I'm already close to that.

I've read the paper that is referred to. It's a very hard read for a non-physician (especially if you're not native English). It says (box 8 on page 10):

"Add a second agent and try to reduce the dose of the initial drug. Second agents may include a dopamine agonist for patients treated with an alpha 2 -delta ligand [like Pregabalin, Restelss_Man] or vice versa [...]"

I think I'll beg my GP for a dopamine agonist then next week when I have my next appointment. I can not get advise or medicine from a neurologist until January.

Is there a dopamine agonist that is recommended or discouraged?

[Polar Bear]

It is now considered best to avoid any of the dopamine agonists if possible as they inevitably lead to augmentation. Augmentation is something you never want to have to deal with.
Sometimes a low dose of a DA will help with symptoms, often in conjunction with another medication, but dosage must be carefully monitored and absolutely kept as low as possible. We have at least one member who augmented within just a few days.
If your doctor is understanding a.low dose of an opioid might be the way forward.
Most of us eventually end up with the addition of an apioid to treat our symptoms.
My treatment involved many years using a DA, many years of augmentation and a doctor who hadn't a clue. I spent 10 months weaning off my DA (ropinerole/requip) and will never use it again.

[Restless_Man]

It is now considered best to avoid any of the dopamine agonists if possible as they inevitably lead to augmentation. Augmentation is something you never want to have to deal with.
Sometimes a low dose of a DA will help with symptoms, often in conjunction with another medication, but dosage must be carefully monitored and absolutely kept as low as possible. We have at least one member who augmented within just a few days.
If your doctor is understanding a.low dose of an opioid might be the way forward.
Most of us eventually end up with the addition of an apioid to treat our symptoms.
My treatment involved many years using a DA, many years of augmentation and a doctor who hadn't a clue. I spent 10 months weaning off my DA (ropinerole/requip) and will never use it again.

Sorry for the late reply. Are there more people hare for who the e-mail notification does not work (I checked the spam folder)?

Thank you for the warning. Why is it so hard to get off ropinerole? I doubt that my GP is going to prescribe me an opioid: she is no RLS expert. I've been referred to a neurologist but my appointment is not until January.

[Polar Bear]

It is thought that ropinerole stimulates the dopamine system.
It's hard to get off ropinerole because of the severe withdrawal symptoms. Many have come off it in only 1 or 2 weeks.This is a time when RLS symptoms will be off the scale like you've never known before. No sleep at all for about 4 days. Gradually getting an hour or two. Unable to sit down, nap, and you'd give anything to take one of your pills to stop the agony. But you mustn't take any ropinerole, not even one, or you're back to the beginning.
Until hopefully you reach your base line and what your symptoms were like before you started taking ropinerole.
This is why it's hard to come off the ropinerole.
I tried to come off twice, unsuccessfully. On my third attempt I did it my own way and did it over ten months.

Do you mean you don't get an email notification when someone makes a comment on your thread. It may be that someone has to actually quote you before receiving an email notification.

[Restless_Man]

It is thought that ropinerole stimulates the dopamine system.
It's hard to get off ropinerole because of the severe withdrawal symptoms. Many have come off it in only 1 or 2 weeks.This is a time when RLS symptoms will be off the scale like you've never known before. No sleep at all for about 4 days. Gradually getting an hour or two. Unable to sit down, nap, and you'd give anything to take one of your pills to stop the agony. But you mustn't take any ropinerole, not even one, or you're back to the beginning.
Until hopefully you reach your base line and what your symptoms were like before you started taking ropinerole.
This is why it's hard to come off the ropinerole.
I tried to come off twice, unsuccessfully. On my third attempt I did it my own way and did it over ten months.

Thank you for the explanation. I'll try to stay away from the ropinirole then. I might ask for an opiate if that's safe.

Do you mean you don't get an email notification when someone makes a comment on your thread. It may be that someone has to actually quote you before receiving an email notification.

Aha. That's it. Thanks.

[Rustsmith]

Polar Bear wrote: ↑
Do you mean you don't get an email notification when someone makes a comment on your thread. It may be that someone has to actually quote you before receiving an email notification.

Aha. That's it. Thanks.
Top

PB is correct. The system will only send a notification to you if someone quotes you. Otherwise, you can use the "Your Posts" in Quicklinks to find your most recent posts and then click on them to find out if someone has provided an answer.

As for opioids, they are very safe at the dose used to treat RLS. The probability of addiction (assuming you have been screened for past addictive behaviors such as gambling or alcohol addiction) is much less than 1%. For comparison purposes relative to safety, I take 7.5mg/day of methadone. A chronic pain patient might be given 40mg/day and a recovering drug addict might get 80 to 100mg/day. The primary risk of opioids is that they can cause breathing problems if you are also taking other central nervous depressant meds at the same time. And even then, they simply increase the risk of interrupted breathing while asleep. The problem isn't the opioid, it is the combination of meds that have a cumulative effect.