7 weeks on Low Dose Naltrexone (LDN)

[libraryannie]

I am on a mission to eliminate the need for Mirapex (Pramipexole). I have been taking it for over 20 years and it has been very effective at controlling RLS even though it took a larger and larger dose to achieve mastery over the “dancing”. When my arms started joining in the Herky Jerky and I was experiencing blurred vision, brain fog, a twitching eye, dark urine, sweating, and I could build a skyscraper out of all the Amazon boxes that I send to myself, I was lucky to find this forum and realize that I was augmenting and that I was taking WAY too much medicine (3X.5mg tablets for a whopping daily total of 1.5mg) according to the revised guidelines which (correct me if I am wrong) the lowest maximum recommendation I could find on websites that publish info about various drugs is .5mg daily. My goal is to bid Mirapex goodbye.Three months ago I started cutting the dose. Every 2 weeks I cut another ¼ pill and am now at .75mg. I have been cautioned that the REAL withdrawal starts around .6mg. My experience is that LDN may help me over that hump.

I had received some LDN from overseas for various health issues but was rather concerned about starting it until I had taken my final dose of Pramipexole because I could find no information on their interactions good or bad. That is until lbrosa's positive response to my query. I have also been diagnosed with SIBO and have read that some people are careful to eliminate that condition before starting LDN. Several LDN websites sent me encouraging research that it is actually helping with various digestive disorders. My doctors are not at all supportive but I am 74 years old and I have done the research which is woefully limited and I don't mind trying something that isn't guaranteed to help.

Although LDN is considered non toxic and safe to use, there are certain interactions to be aware of. Seven weeks ago I began taking LDN. The defined range is 1.5mg to 4.5mg and the recommendation is to begin at the lowest dose unless you are taking Thyroid medication. LDN may affect the body's need for thyroid so I started even lower at 1mg but have since read that people with thyroid issues may start even lower (.25mg). It is essential to have thyroid levels monitored and thyroid medications adjusted (possibly lowered!), so I will have them checked next month. Other interactions include alcohol, narcotic medications (Ultram, Morphine, Percocet, Tramadol, Duragesic Patch or Codeine), steroids, and interferon (Beta Seron, Avonex or Rebif). “LDN should probably not be taken during pregnancy.” ~ lowdosenaltrexone.org/gazor...

The one side effect of LDN that was worrisome to me is the possibility of very vivid nightmares which happened to people who started at the higher end of the range. Even at 1ml, my first night on LDN I did have vivid dreams and I have been more aware of dreaming ever since but no nightmares. Another side effect of LDN is disturbed sleep. My son has MS and was in a 2007 trial at UCSF where each participant was given 4.5ml of LDN at bedtime. He said his sleep was so disturbed that he (and many other users,will wait until the morning to take their dose but this is not as effective. Some report that if they start at the lowest dose and increase slowly, they have not experienced the disturbances. Others experience the disturbances for several days and then enjoy blissful sleep. I have not slept this well in a long time.

I have picked a very arbitrary 10 days before adding another .5ml. Many people wait much longer. I am now taking 2.5ml at bedtime.So the burning question is: has it helped with RLS and with withdrawal from Mirapex? I have three observations to share. 1. For 20 years, if I forget to take Mirapex on time (around 6 or 7 is optimum for me), there is hell to pay for a couple of hours around 10-12. The only recourse is a hot bath which is a luxury in the South West United States. Last night I didn't take the Mirapex until 9:30 and at 12:30 I realized that I hadn't had a payback. 2. When I began cutting mirapex's dose, I would experience several days of increased restlessness before my body surrendered to the change. The last two ¼ pill cuts I have not experienced any backlash. 3. and most miraculous, for about three weeks, I have not felt ONE twinge of restlessness. I do take a toke of mj before bed sometimes but not always. It helps me get to sleep quickly and before LDN, it would guarantee 4 hours of good sleep if I had taken my pills on time.

I cannot emphasize enough that this is my experience. It may not be yours. Some people are not helped by LDN.

All my very best wishes to my fellow dancers!!

[TEAH35]

Hello libraryannie

I think I am in the same position as you. But unfortunately your very informative, albeit rather long post, caused me some confusion.

Would it be considered to be 'bad faith', to request a more condensed version of your post? FYI ...I have been taking Sifrol for 6/7 years and consider myself to be extremely lucky to have lasted this long. And you've been using it for 20 ... Wow.

[libraryannie in reply to TEAH35]

I know it is long... please let me know what you want condensed and I will try. I didn't want to leave out the warnings since so many people on this site are taking other meds...

[TEAH35 in reply to libraryannie]

Did you experience augmentation at all? I don't know what LDN is. I have no qualms about using mj that is if I can get it. I am down from 3 Sifrol to 2. You mentioned vivid nightmares. I have taken Valium for 2 nights and I didn't just have nightmares .... I would describe them as horror-mares. Luckily I cannot remember them.

[libraryannie in reply to TEAH35]

Did you experience augmentation at all?

YES. My arms started jerking same as my legs.

I don't know what LDN is.

I prepared an explanation of LDN for my doctors but they would not even look at it. They would like me to stop taking it. I could email you what I wrote.

I have no qualms about using mj that is if I can get it.

Me neither but I have found some varieties will not help with RLS and others will only help for about 4 hours then I am awake for the rest of the night. Won't smoke more because it is too close to morning. Granddaddy Purp is the favorite of RLS inflicted but I have never had the pleasure of trying it.

I am down from 3 Sifrol to 2.

Great News!! How long did it take you? It took me two months to go from three pills to two. How long do you wait between reductions? How much do you reduce each time? How does your body react to the reductions?

You mentioned vivid nightmares on valium.

Most of the vivid night mares happen when someone starts at the top of the LDN range (4.5ml). If the dosage is reduced to 3ml the nightmares often stop.

I have taken Valium for 2 nights and I didn't just have nightmares .... I would describe them as horror-mares. Luckily I cannot remember them.

Even if you can't remember them, I bet it shakes you up! I am up to a nightly 2.5ml of LDN and I am aware that I am dreaming more than ever in my 74 years but none are nightmares.

I am hoping LDN is going to take the place of Mirapex. Please look up lbrosa's account: “first night on LDN” and comments underneath. first letter of her name is a small L.

Best Wishes

[libraryannie in reply to TEAH35]

Maybe the last paragraph?

[libraryannie]

Last night I didn't take Mirapex until after I posted this article. Had to be after 10. I thought I had pushed it a little too far and was doomed. There used to be nights when those thoughts alone would raise RLS's ugly head. I am happy to report there wasn't one twinge.

[TEAH35 in reply to libraryannie]

It is such a shame, that a drug like Sifrol and Mirapex give 100% relief, have to be stopped eventually, is apparently no replacement insight. how did you handle the side effects? I'm still troubled with the obsessiveness.

[TEAH35 in reply to libraryannie]

So'k I Googled it.

[Joolsg]

Thanks so much for that info. Involuntary Dancer has also had good results with LDN and flowergirl used it in micro doses to get off a combination of OxyContin and pregabalin. She now takes 4.5mg a day and has no more RLS.

I think it is a very useful drug to know about and your experience in using it to withdraw from a DA is extremely helpful. I wish I’d known about it before going through a traumatic withdrawal from Ropinirole.

Jools

[libraryannie in reply to Joolsg]

I was wondering if the micro doses (also called Ultra Low Dose Naltrexone) would work for those of you on pain killers. That is wonderful news! There is a Facebook site called NOPE that studies the different approaches to ULDN and Brian Haviland (one ofthe administrators) is very knowledgeable about this approach as well as the use of regular LDN.

[libraryannie in reply to libraryannie]

I tried to look up flowergirl to see if she detailed how she went from micro doses to regular doses of LDN but I couldn't find her.

[LotteM in reply to libraryannie]

Use the search button and search for flower-girl (mind the hyphen) and LDN. Her post and replies should come up. As I am on my phone I can’t copy a link to her posts.

[lbrosa]

Hi libraryannie...I think you are doing well and that is such good news! Just hang in there and soon you, too, will be rid of that horrible Mirapex! LDN is doing well for me although, so far, it does not completely do away with RLS but makes it tolerable, i.e., I can usually get up and move around, take a hot shower or do something to distract myself and get past it. The LDN has affected my sleep and I have messed around with the dosage as well as time of day taking it until I now "think" I have got over that hump. I started at 1.5mg and tried several times before finally being able to move up to the 3mg (where I am at now)...I also took it in the morning rather than night and have just recently tried it again at night and seem to be doing fine with the night time dose of 3 mg.! I have just had three of the best nights in many years so I am HOPING things are looking up! I plan on staying with this routine for some time before trying to go to 4.5mg. My very best wishes to you and everyone out there suffering with RLS as well as the side effects of various medications we have all tried!

[libraryannie in reply to lbrosa]

So good to hear LDN is still helping! I have read that reducing the dose to 3ml is the sweet spot for people who have disturbed sleep at the maximum dose. Please let us know how it goes when you try 4.5 again. Thank you for sharing your experiences with it! You have been my inspiration!!

[genekdw]

I have had outstanding results from another opioid antagonist; a sublingual tablet of Buprenorphine-Naloxone 8-2 mg (generic SUBOXONE). I take one each morning and also take 900 mg gabapentin (300 in morning and 600 at bed time). This combination, with a mj laced brownie at bed time, has been miraculous! I sleep through the night and if I do need to get up and go to the bathroom I easily fall asleep after. I have previously been through all the usual treatments, but they were, or shortly became, ineffective. This regimen is 100% effective in damping the leg and arm spasms and/or need to move. Side effects have not been observed.

Just my experience but I wonder if others have had similar results with opioid antagonists or agonists..

[libraryannie in reply to genekdw]

Great to know about another opioid antagonist. How long has it worked for you?

[genekdw in reply to libraryannie]

Three months of blissful relief.

[libraryannie in reply to genekdw]

I know what you mean. It has been an unbelieveable miracle after 20 years!! Let's pray it will last!!

[involuntarydancer in reply to genekdw]

That's an amazing outcome and very interesting to read about. Very pleased for you, genekdw. I wonder if in part it is the buprenorphine that is helping. My understanding is that it is an opioid - or at least acts on the opioid receptors.

I have been taking ldn but would have to say it didn't make any direct impact on my rls. It did make me feel better during the day however which helped with my quality of life. However, I have discontinued it temporarily. I was taking a break from my small dose of mirapexin (0.044mg) to guard against tolerance/augmentation and I needed to use kratom to help with my urge-to-move symptoms. I found that even with cutting the dose of ldn to 3mg and taking it in the morning rather than the evening, the kratom was completely ineffective. Whereas when I eliminated ldn the kratom started to work again (mercifully as I was getting pretty desperate with rls all night and virtually no sleep).

I have now reintroduced mirapexin after a month off and I am in the process of reducing/eliminating kratom. I am going to reintroduce ldn shortly in the hope of improved daytime alertness and well being. I continue also to hope that in the long term ldn might have a positive impact on my rls but would have to say that even after 6 months on it - of which I was on 4 mg for at least 3 months - it did not seem to have any direct benefit on my rls. I wish it had.

[genekdw in reply to involuntarydancer]

Yes, I was amazed at my results too. I assume it is the buprenorphine that is somehow working on the opioid receptors (with less risk of addiction and withdrawal problems). My doc has several Atlanta patients on this drug with great results, as do other neurologists in Boston and Baltimore. They are writing a paper now for the clinical literature. I would be very interested to see this more widely adopted on the off chance that there is relief to be had here for others.

[purrific in reply to genekdw]

This is such an old post you probably won't see it, but who is the doctor in Atlanta, GA?

[Hidden]

I am also trying to get off Mirapex and I’m pretty much on the fast track to do so! I wish you luck!

[ronald-vonk]

Hi, did you take the LDN at night or in the morning?