naltrexone

[collageartist52]

hello all,

I have been reading about naltrexone and found article where the patient got complete relief from her rls by taking a low dose of this medication. Has anyone here had experience with this medication?

Thanks,

Julia

[Joolsg]

There was a member called FlowerGirl several years ago who had severe RLS and Oxycontin and pregabalin weren't helping at all.She used micro dose LDN to get off Oxycontin and pregabalin and when she was off them completely, she increased the LDN ( Low Dose Naltrexone) to 4.5mg and it completely resolved her RLS.

It clearly does help people.

If you're on an opioid, you can use micro dose to deal with Opioid withdrawal symptoms.

I would definitely have tried LDN if my doctors had refused to let me try Buprenorphine.

[collageartist52 in reply to Joolsg]

i am so thankful for your reply. I have read a number of posts here on this site about LDN and feel excited to try it. Have been on mirapex 2x in the past..augmented, went thru hell to get off, but could never find anything that helped....i had terrible back and hip pain for 2 years, hardly any sleep and all docs and PTs could not help me. Gabapenten, lyrica...nothing helped, just had other horrible side effects..i noticed that my nightly pain had the same circadian cycle as my RLS had had..so just as an experiment, i went on a 1/2 tab of my old frenemy: mirapex and from the first night...NO pain....so we know what i have, but i know that i am going down the same tunnel to the same trap...i hope i can get my dr to give me some LDN. I have also noticed that compulsive behaviors are increasing with the mirapex...but darn it..it sure does help in the beginning...sadly i know only too well, what it will take to get off it. This condition is impossible to describe to someone who does not have it...

[Joolsg in reply to collageartist52]

If you can find a knowledgeable doctor, you can also try methadone or Buprenorphine. After augmentation on Ropinirole, pregabalin, gabapentin & Oxycontin didn't ease my severe RLS. Buprenorphine 0.4mg stopped ALL symptoms the first night I took it.If you're in Florida or Ohio, I know 2 doctors who are familiar with the Mayo guidelines and who will prescribe iron infusions and low dose opioids for refractory RLS.

[collageartist52 in reply to Joolsg]

thanks so much for that..i am in WV..so ohio could be a possibility. I saw a neurologist in pittsburgh who was completely unhelpful and did not listen at all...but just ask her: she's the best expert out there.

It is very hard to find a doctor who truly understands the magnitude of this condition...

[Joolsg in reply to collageartist52]

Dr Andy Berkowski does virtual appointments out of Ohio. He co wrote the Mayo Algorithm and knows the dangers of augmentation. He'll arrange iron infusions if necessary and will prescribe opioids. He has an excellent website. We need clones of doctors like him here in the UK.relacshealth.com/

[collageartist52 in reply to Joolsg]

i saw an interview with him yesterday. He is my next step if my doc cannot help..see him today.😀

[RLSdaily in reply to Joolsg]

Great info that US doctors are getting on board with other meds

[Seaux in reply to collageartist52]

I have been through a similar experience with refractory RLS. My neurologist finally referred me to a pain clinic in NC, and the doctor there put me on methadone. No more RLS!!I also know the name of a doc in NC that will prescribe iron infusions. If you would like the name of either the pain clinic or the doc re iron infusions, write me back.

[collageartist52 in reply to Seaux]

thanks for reaching out..i have had my ferritin checked and it seems to be fine...but i am curious about being on methadone..naturally i would love to be pain free, but do you find there are side effects of the methadone? Is it considered an opioid?

[Seaux in reply to collageartist52]

Yes, it is an opioid and is primarily used to help opioid addicts get off all opioids. Apparently it doesn't have the "high" associated with the other opioids. Like all opioids it has the usual side effects - drowsy, constipation ,etc. but I have found that the SE's get better with time. Methadone was found to be the most effective opioid for treating RLS in the One year longitudinal RLS Opioid Study done by John Winkelman, MD. at Massachusetts General Hospital.

[SueJohnson in reply to collageartist52]

You say you had your ferritin checked and the doctor said it was fine, but what is fine for others is not fine for those of us with RLS. Ask your doctor what it was. The test needed to be done fasting after midnight and done in the morning with no iron nor iron in a multivitamin taken 48 hours before. Otherwise it will be higher than it really is. Assuming that is the case it needs to be above 100. If not, post it here and we can give you some advice.

[collageartist52 in reply to SueJohnson]

thanks sue..i saw a new doctor today, and she seems to be very informed..ferritin was the first thing she mentioned..will be letting you know! I am grateful for the support i receive here and also the excellent information!

[Lespenney]

I tried LDN without relief. It was about 2 years ago, can’t remember the dosage. I also tried Buprenorphine, which was the best drug for my rls however made me very sick. Out of no where I would get the sensation to vomit. So I had to stop. I am on oxycodone, which gets me through the night to 3:00 am and I take a bit more (1/4 pill) and gets me through to the morning. I have not been able to find a way to get through a full night on a regular basis. It does happen occasionally (1 night a week), but I can’t figure it out.

[collageartist52 in reply to Lespenney]

boy, can relate to that! I have not had more than 3 hours of sleep in years...in fact, after that first wake-up around 11:30pm, it's pretty much every 60-90 minutes for the rest of the night..

[RLSgirl in reply to collageartist52]

same for me!

[TeddiJ in reply to RLSgirl]

hi. see my post here, just in case.

[TeddiJ in reply to collageartist52]

hi-see my post, in case it could help.

[TeddiJ in reply to Lespenney]

hi. just an FYI, I vomited taking even tiny pieces of regular BUP. I had tried methadone and also oxycodone. I could not get through a night without taking more oxycodone, so I was switched to Suboxone film (which has BUP). No nausea or vomiting. I recently discovered that I only have to take 1/8 of the 2 mg film each night and I have virtually no rls now. I have had many struggles in my journey, which I won't get into, but thought you might want this info. Doctors are much more likely to prescribe suboxone than other opioids-I have discovered.

I am still a proponent of kratom or hirsuta, depending on one's situation. I stopped using those for now, because my nights were still disrupted, miserable, and messy. the recent good news is that I do not need very much of this opioid so therefore the side effects which made my life harder (mainly itching, sweating, sleeping too much and falling asleep late day) are mostly gone. Recent horrific soaking sweats/hot flashes was probably due to hormone disruption and disfunction, as I had gone off hormonal therapy last year to see if that would help the rls. Plus, opioids can mess with hormones.

[Joolsg in reply to Lespenney]

LesPenny. Nausea and vomiting are common on Buprenorphine. I was determined to stay on it as it stopped RLS dead.I used cannabis at night for about 10 days and it stopped the nausea.

If you ever decide to try it again, stock up with cannabis oil with at least 20% THC. Chemo patients use it to stop nausea and vomiting.

[marsha2306]

I took low dose naltrexone a few years ago. It did nothing for me.