Naltrexone for RLS?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
EeFall
Posts: 1494
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Naltrexone for RLS?

Postby EeFall » Fri Aug 09, 2019 5:28 pm

As the longtime visitors to this site may remember I have been using Suboxone for RLS for about 7 years now. After taking around 25 other medications that all eventually stopped working either by themselves or several different drugs daily, (a cocktail I think it is referred as). I take 1mg 4 times a day and if I forget to take any of the doses not only does it mess up my RLS but I go into withdrawals. It was rather bad last night as I had forgotten to take my dose at 5:30 pm and my 8 pm late also. The thing is though while it allows me to sleep the sleep is never great and it has so many side effects it is almost worse than the RLS.

Someone I know who works with addicts told me that while they still use Suboxone to get addicts off narcotics that they are now using Naltrexone instead and has less side effects and is much cheaper. They had heard that it also helped with RLS. Currently I am paying $188.00 a month which is actually cheaper that the $300.00 it used to be but still a lot as we are on fixed incomes. I looked Naltrexone up online and it could be as cheap as $30.00 a month if I am looking at the correct doses online. Besides Suboxone makes me irritable, itchy, constipated, plus it causes pain in my back and other places. I sure would like to try Naltrexone out to see if it would work but I don't know anything about it. Please let me know if you have heard of it and if it works.

I am thinking about contacting my doctor and asking him to put me on it but I don't want to mention it unless it might actually help. Also of course I am really dependent on Suoboxone and it would be at least a month of torture getting off the drug. The same person who told me about Naltrexone said they had never heard of anyone taking Suboxone that long and the withdrawals would be a nightmare. If Naltrexone would work though I would gladly go through the withdrawals. :D

stjohnh
Posts: 983
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Naltrexone for RLS?

Postby stjohnh » Fri Aug 09, 2019 5:57 pm

Here are a couple of the threads on naltrexone:
http://bb.rls.org/viewtopic.php?f=20&t=9876&hilit=naltrexone
http://bb.rls.org/viewtopic.php?f=4&t=9581&hilit=naltrexone

There are others if you do a search. I tried Low Dose Naltrexone for a few weeks without much improvement. I think a few have had good results, but most have not.

Your suboxone is a combination of an opioid and and a narcotic antagonist (naloxone). Naloxone is similar to naltrexone.
Blessings,
Holland

QyX
Posts: 577
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Naltrexone for RLS?

Postby QyX » Tue Aug 13, 2019 10:21 am

Personally I would be surprised if Naltrexone is more effective than placebo for the average patient but you never know how it will work in an individual case. However given what we know about how opioids affect RLS, it is unlikely Naltrexone will do you any good, in my opinion.

Maybe you would be better off trying more classic opioids like Morphine, Oxycodone or Hydromorphone and try and see if cannabis based medicine can improve your sleep quality. Lately I'm having quite good success with cannabis medication and it also helped me reduce my opioid dosage by about 1/4. The effects I'm having are not 100% reliable but it is now moving in the right direction.

legsbestill
Posts: 539
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Naltrexone for RLS?

Postby legsbestill » Wed Aug 14, 2019 7:34 pm

There was an interesting post by someone about two or three years ago (I temporarily forget his username - 'aipulo' or something like that) who was prescribed naltrexone - full dose, from memory it was 25mg - to assist with weight loss. I think the idea was that it would reduce the pleasure he derived from overeating. He was in full blown augmentation on pramipexole at the time and also had problems with impulse control issues relating to the pramipexole consumption. He posted that both the augmentation and the impulse control issues ceased immediately upon his commencing naltrexone. I think he was actually able to reduce his pramipexole dose also.

However, my understanding is that naltrexone inhibits the effectiveness of opioids - I think by blocking the opioid receptors (please forgive my non-scienc-y lack of precision). Would that not mean that taking naltrexone would prevent the opioids from treating your rls symptoms?

I took low dose naltrexone for nearly a year in gradually increasing quantities to see would it help my rls. I stayed on each dose for about 3 months. I ultimately increased to about 8mg from a starting point of 1.5mg. I did not notice any significant benefit in terms of rls. I think daytime tiredness was helped somewhat but not as much as when I took dipyridamole. However, I understand that naltrexone should be taken in the evening for optimal effect and I took it in the morning because I was using kratom in the evening for my rls and I was hoping that keeping the doses far apart would reduce the impact of the naltrexone on the kratom (there is a small study that suggests it can be used with opioids if there is a sufficient time lag). I think it did interfere with the kratom notwithstanding the time gap unfortunately.

legsbestill
Posts: 539
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Naltrexone for RLS?

Postby legsbestill » Fri Aug 16, 2019 7:41 am

It was aipulu.

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Naltrexone for RLS?

Postby badnights » Sat Aug 17, 2019 7:36 pm

Naloxone and naltrexone are both opioid antagonists; they bind to the receptor but do not trigger a pharmacological response. Both drugs block both the analgesic action of opioids that we take and the pleasure effect of our built-in opioids (endorphins, etc.), but naloxone acts within minutes and lasts for only about an hour before it is metabolized. This makes it ideal for opioid overdose rescues.

Naltrexone acts slowly and lasts longer. In fact, the effects of naltrexone arise from both the parent drug and its major metabolite, and they last about a day. This makes naltrexone useless for overdose rescue, but effective in helping people who are addicted to opioids have less craving for them.
(paraphrased from https://www.acsh.org/news/2018/07/05/na ... s-it-13161)

Aipulu (Richard) was using naltrexone to treat impulse control disorder and augmentation. He continued to take pramipexole the whole time (2 years, last he posted).

Suboxone is a combination of an opioid and naloxone. I think there was a conversation on here about how that could possibly work any better than the opioid alone.. . I think the agreement was that it helped with gut issues and addiction issues?? but I don't really remember.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
Posts: 577
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Naltrexone for RLS?

Postby QyX » Sat Aug 17, 2019 11:34 pm

badnights wrote:Naloxone and naltrexone are both opioid antagonists; they bind to the receptor but do not trigger a pharmacological response. Both drugs block both the analgesic action of opioids that we take and the pleasure effect of our built-in opioids (endorphins, etc.), but naloxone acts within minutes and lasts for only about an hour before it is metabolized. This makes it ideal for opioid overdose rescues.



Oh this is funny, you say Naloxone and Naltrexone do not trigger a pharmacological "response" but then you continue on and explain what the pharmacological effect of those drugs are. (To me response and effect would have the same meaning in this context).

About Suboxone: I believe the Naloxon in Suboxone is only a marketing thing. It has been added to the drug so that people who use Suboxone in a opioid substitution / replacement therapy don't inject and abuse it. However Buprenorphine binds way stronger to opioid receptors than Naloxone. It is not like the Naloxone can't replace the Buprenorphine at all but it is very close to that. So to effectively combat a Buprenorphin overdose with Naloxone, you would need really a lot of it. So while Naloxone has some effect in this context, it is much more a marketing thing and a way to ease the anxiety of doctors who are prescribing those drugs to addict.

I've been researching those topics in the past and from what I've heard from patients it would be much better if the Naloxone is not in the tablet. For us RLS patients the Naloxone has no use at all. It is metabolized before it would have the chance to cross the blood-brain barrier.

EeFall
Posts: 1494
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: Naltrexone for RLS?

Postby EeFall » Tue Aug 27, 2019 3:21 am

Thanks for the info everyone. I see now it would not work at all for my RLS.

One good thing happened awhile back as my doc changed my two 2 mg dose to one 4 mg dose which is the same thing but for some reason over $100 a month cheaper. At least it still works for me.

I just wish there were not so many side effects but whatever.

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Naltrexone for RLS?

Postby badnights » Thu Sep 05, 2019 4:49 am

Oh this is funny, you say Naloxone and Naltrexone do not trigger a pharmacological "response" but then you continue on and explain what the pharmacological effect of those drugs are. (To me response and effect would have the same meaning in this context).
You;re right and it is funny. I have no idea why I wrote that. My whole response was not researched well. I apologize.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Aipulu
Posts: 60
Joined: Thu Dec 18, 2008 8:12 am
Location: Maui, Hawaii

Re: Naltrexone for RLS?

Postby Aipulu » Mon Dec 02, 2019 8:39 pm

I am the one who posted several years ago about my use of Naltrexone to control RLS augmentation and impulse control issues. I am still taking Naltrexone and it is still just as effective in controlling both of these issues. I currently take 1mg of Mirapex and 600 mg of Gabapentin for RLS. I take 25 mg of Naltrexone twice a day, in the am and at night to counter the effects of Mirapex. Why this dosage? I started taking Naltrexone for weight control and that was the dosage I was using for that condition. The augmentation and the impulse control issues, which were both severe at the time, stopped immediately. Totally unexpected. But I was so grateful because my neurologist was not going to put me on opioids, and my attempts to reduce my dose of Mirapex was not working out. I did once try to take less Naltrexone, because a naturopath told me that low dose Naltrexone can be more powerful than higher doses. So I stopped taking 25 mg at night and only took 25 mg in the morning. The impulse control issue came roaring back but not the augmentation. So I am back on 25 mg twice a day and have not done any further dosage experimentation. A pharmacist told me that Naltrexone is a safe drug to take (and she was taking the drug for addiction). So I have been encouraging those with either of these two conditions to give it a try. I think this is might be a viable method for those who cannot or do not want to use opioids. But it is not going to be considered by the medical establishment unless we can show that a number of us RLS sufferers benefit from Naltrexone.

QyX
Posts: 577
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Naltrexone for RLS?

Postby QyX » Mon Dec 02, 2019 9:40 pm

It would be very interesting to know if Naltrexone could help in more cases of augmentation.

This is quite an interesting experience you are making.


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 2 guests