In my last blog entry I discussed my current experiences with an integrative medicine doctor. (Going Down the Road of Integrative Medicine). In that entry, I mentioned a new medication I was prescribed by this doctor called low dose naltrexone (LDN) and I think that it is worthy of its very own blog entry so here we go. Be forewarned, it’s a bit complicated…
Since we have the modern day miracle of Google, I am not going to spend a lot of time describing LDN and exactly how it works, but I think there are some basics that are important. Naltrexone is a medication that was created in the late 1970’s as a treatment for heroin overdose and subsequently used in larger doses (50-300 mg) to treat heroin addicts. It blocks the opiate receptors in our body, which are also found on immune system cells. The next discovery, in the 1980’s, was that naltrexone at lower doses (hence why it is called low dose naltrexone), blocks these opioid receptors and increases the endorphin levels in the body, which were noted to be low in people with autoimmune disorders as well as in many other illnesses, such as cancer and AIDS. At lower doses, such as 3-4.5 mg, the LDN blocks the opioid receptors for a short time, a few hours. Once this blockade wears off, the body responds by increasing its production of endorphins and this results in cellular changes that inhibit cell growth, inflammation reduction, and healing. It is not an immune booster or suppressor, but rather an immune regulator.
OK, whew. That hurt my head. I have found two books to be extremely helpful in understanding LDN. The first is: The Promise of Low Dose Naltrexone Therapy by Elaine A. Moore and Samantha Wilkinson and also Up the Creek with a Paddle by Mary Boyle Bradley.
Now, when my integrative medicine doctor told me that he wanted me to try this medication, he did not make any promises or unrealistic claims about its effectiveness. He did refer me to the website:
http://www.lowdosenaltrexone.org/ for more information. However after scouring this website, I became skeptical about the medication. I had a hard time believing that one medication, as seemingly harmless as this one, could effectively treat all the diseases that it claimed it could: autoimmune disorders, many types of cancer, and AIDS. Because if it was that effective, why were so many people still sick? Why didn’t more doctors and patients know about it?
After about a month of online research and reading the above two books, I had to admit that I was very intrigued by the positive effects LDN was having on some people with autoimmune illnesses, specifically multiple sclerosis (MS). Sjogren’s syndrome and MS can share an uncanny amount of similarities in terms of symptoms and many people with Sjogren’s are originally misdiagnosed as having MS. I also read many anecdotes about the success of LDN on other autoimmune illnesses such as Crohn’s disease and rheumatoid arthritis.
So WHY don’t more people know about this? Many proponents of LDN therapy claim that it is seen as an alternative therapy and that its use is not widely recognized because there is not enough clinical research done on the positive effects of the medication. There have been some small clinical trials done at a few very noteworthy medical institutions, but it has not been studied on a large scale. Why not? Well, pharmaceutical companies fund these trials and naltrexone is a generic, very inexpensive medication to produce. According to LDN proponents, there is no financial incentive. Despite the fact that this may sound like a conspiracy theory type of thing to a lot of people, with my less than favorable experiences in regards to the pharmaceutical industry, it all makes sense to me.
As I see it, there are two issues with LDN. The first is that the one major side effect it has is insomnia. This is something I have been struggling with significantly since last Spring, possibly due to another medication called Topamax. The second issue is that because it blocks opioid receptors, you CANNOT take any narcotic pain medications while taking LDN. If you do, you have to stop the LDN. Luckily, my rheumatologist is not a big fan of using narcotics to treat Sjogren’s related pain issues and I have adverse reactions to many narcotics anyways. Because of this, I have worked hard at learning and utilizing other pain management techniques. When things are really bad, I do resort to a pain medication called Tramadol. Because of its mechanism of action, Tramadol is a centrally acting analgesic, rather than a true narcotic. However I was instructed that if I do take Tramadol, to space it four hours apart from my nightly LDN dose.
LDN is routinely taken between 9pm-2am although some people say that it can be taken in the morning. However since endorphin production is highest around 2-4am, it is thought that this is the best timing for the highest effectiveness. LDN also needs to be specially compounded by a pharmacist and not every pharmacy does this. I get mine from Skip’s Pharmacy in Boca Raton, Florida. One month supply, not covered by insurance, costs me about twenty-five dollars with shipping.
So five weeks ago, after much trepidation and research, I decided to just go for it and I took my first dose of LDN. To begin with, the only side effect I have noticed is the insomnia and I will admit, it is pretty rough and worse than before I started the LDN. I have since weaned myself off of the Topamax, which I take for severe autoimmune related migraines, in the hopes that will help alleviate the insomnia. I already have a lot of alternative methods I use to help sleep such as meditation, herbal tea, etc. but like clockwork, I wake up between 1-2am every single night after going to bed around 10pm. Sometimes I fall back asleep and sometimes I don’t. However that all being said, I have been battling a bad viral infection this week and have been sleeping better. Not sure if that is because I am sick or not. Because sleep deprivation is a trigger for worsening of my Sjogren’s symptoms, before this week, I had been taking a sleep medication two to three times a week to help me catch up on my sleep. I was told by Skip’s that the insomnia should improve and possibly even go away within the next few weeks.
It is very hard to see a benefit from a medication like this when you have recently started other treatments as well. I started an autoimmune medication called Arava in October and an eye medication called Restasis in November. Except for a week exacerbation of joint pain on my third week of LDN, my joint pain has significantly improved and my eye doctor told me last week that my eye dryness has improved. LDN related? Possibly.
Since stopping my migraine medication, I initially had a week of migraines and they have since resolved. I am hoping it stays that way. If I continue to have a significant reduction in migraines or even complete resolution of them, I will absolutely attribute that to LDN because prior to LDN, I could not function without Topamax.
The improvement I have noticed, that I know cannot be attributed to other medication, is in my overall well being and my energy level. It is difficult to explain but does make sense considering LDN affects our endorphins. I feel more able to effectively cope with my physical symptoms when they do arise and my mood seems more stable. This is significant because I am still in the process of weaning off prednisone. There has also been a decrease in my anxiety level to the point that this week, I can say I have no anxiety at all. That is also significant as I am still waiting for some test results and this would naturally produce some anxiety for me.
At first, I did not see the improvement in my energy level. It was subtle. I also am not sure if it can be attributed to the Arava as well. Although I am still extremely fatigued by about 4-5pm each day, I have noticed that my days are becoming more productive. This is highly unusual, actually unheard of, when I am weaning off prednisone.
And that is where I am at five weeks into my LDN journey. In my head, the jury is still out as to how effective this treatment might be for me long term. I am hopeful.The signs so far are positive and I think time will tell; especially once I am completely off prednisone and hopefully the Arava as well. I also think that it is not a treatment that when used alone, will cure me. Rather, I think it is one more tool, along with exercise, supplements, diet, stress management, and multiple other modalities, that can be used in my long journey to improved health.
Thanks for an interesting article. I too am on Topamax for autoimmune migraines and have suffered for years with insomnia. My naturopath recommended 400mg of triple magnesium and it has done wonders for me. I sleep well now most nights. She says it is the 3 different kinds of magnesium that do the trick. I get mine online from Swanson's Vitamins.
Thank you for mentioning about the magnesium as I forgot to mention that. About two weeks ago, I started taking 500 mg of magnesium as part of a calcium/magnesium supplement. I have osteopenia thanks to the steroids and figured I could use the extra calcium and then was reading about magnesium helping insomnia. I will ask my integrative med doc about the triple mag. It's interesting because my neurologist insisted that the insomnia was not from the Topamax but the timing was too coincidential. I am glad you are sleeping better!
That was very enlightening – thanks for this blog
Christine what dose of LDN do u take? I started on 1.5 and worked up to 2.5 before I had to back off for surgery. I noted the energy too. No problems sleeping but wild dreams for sure. Could not really tell an improvement in other symptoms but was not on long…
Thanks for sharing this. I'll be interested to see how much you find it helps.
I look forward to hearing more about this. It is always something that has intrigued me.
Topamax does not seem to cause insomnia for me at all. I hope you get yours figured out. Not sleeping is the worst. If you can't sleep, your body surely cannot heal, no matter what medicine you are taking. Blessings to you.
Thanks for sharing. I asked my rheumy about this awhile back and he said we could try this if other meds don't work. He said there is not enough information about its effectiveness for Sjogren's but it would not hurt to try.
That's my though, nothing to lose except for sleep. And I know that is a big deal for us but I am hoping it is temoprary.
I started on 3mg but if I ever have to go off of it and back on, I will ask to start at a lower dose. other people I have talked to say that it helps lessen the insomnia to go up on the dose slower. I do have incredibly vivid dreams as well but I can handle that.
Me too!
Just a thought/personal experience..I found taking L-tryptophan helps me sleep since taking LDN; For me, about 250-500 mg works, but more may be needed and safely taken. I was already taking 3 mg of melatonin, but going up on it didn't work while adding in the L-tryp. did.
Evaline,
I am still having issues with the sleep related to the LDN so thank you for the tip!
Starting LDN for MS tomorrow. Thanks for sharing your experience. The pharmaceutical industry has a very strong interest in suppressing LDN. The MS medications range from $40K – $60K per year. LDN is about $300 – $500.
I agree about LDN being suppressed. Good luck!
My natural MD (Dr. Cowan in San Francisco) has me take a tsp of ashwagandha with the LDN before bed and this helps tremendously with the sleep side effects.
Thanks for the tip!
what is the lowest LDN dose that is therapeutic for MS? I am taking 3 mg and MS has been stable but has some spasticity and would like to know the lowest LDN dose I can try and still receive its benefits.
Christine, do you know what the lowest therapeutic dose is?
From what I have read, the recommended lowest therapeutic dose is typically 3mg but I have read a few patient experiences where they noticed an improvement on 1-2mg. Some of those people still increased it to 3mg based on doctor recommendations.
Thanks Christine
I just stumbled upon your "ramblings" and am intrigued. I am meeting a new doctor on Tuesday (July 16th) about this very drug. I have sjogren's and fibromyalgia. I've been on plaquenil (hydroxychloriquine) now for two years, it's doing a good job on the fatigue and my stamina has greatly improved. I too have had to find ways to self-manage stress and the like and that has helped. My fibro won't give me a solid night's sleep either – it's a real drag. How is the LDN helping you now? Are you still taking it or was it a disappointment and you dropped it? my eyes are worsening as is my salivary production. I've already had my esophagus stretched and the stomach issues…well, they are getting old, if you know what I mean. Would really like to know how you're doing with this drug. Thanks, hope you're well.
Hi there,
I am still taking 3mg of LDN every night. My doc and I were talking about the possibility of increasing it to 4.5 mg last month as I was struggling with pain and fatigue but we decided to add Botswellia instead and do a very brief run of prednisone (a week). Not because the LDN doesn't work but because 4.5mg is the max and we don't want to go there unless absolutely necessary. In regards to the prednisone, a week on it is a dramatic improvement from being on it every single day at higher dosages.
I do think the LDN helps a lot. Like I said, I was having issues last month but I had just gotten married and there was a lot going on for me physically. I have been able to manage the insomnia from the LDN with a triple magnesium supplement and a GABA supplement. Both together work miracles for me. Insomnia still has been my only side effect from LDN.
I would STRONGLY suggest anyone with autoimmune illness talk to their doc about trying LDN. The only issue would be if you take narcotics for pain. Since starting LDN, my need for pain medication has decreased dramatically. When I have to, I take Tramadol.
Good luck at your appt. tomorrow!
This was really helpful, thanks! I will bring LDN up with my rheumatologist.
Christine, thanks for your story! So glad you are weaning off the other drugs!!! i just started two nights ago on 1 mg ldn to deal with hep c, arthritis, etc. Wow, this sleep issue is a killer and i am only on 1 mg. I had just started sleeping better after getting off valium 6 months ago (that was a nightmare)… anyway, keep us updated and good luck to you
You're welcome! The sleep is still a challenge for me, but recently I have had a lot of success with a combination of Triple Magnesium and GABA at bedtime. I also set my alarm and take the LDN at 2am. It seems like a crazy idea but since our endorphin levels peak between 2-4am, I was hoping to stop the waking up at 2am for the day which is what happened when I took the LDN at bedtime. So far, so good. I am sleeping until about 6-7am. It might be worth trying and good luck!!
Hello, I'm starting on my third week of LDN and although I do notice an improvement in my fibromyalgia pain, the insomnia is making me crazy! I had weaned myself off sleep aids (benzos and Benadryl which were causing memory problems) but I am going to have to figure something out, so I appreciate your tips on how to help this.
Good luck, it is difficult. I have been off the LDN now for over a month because of the insomnia worsening. I may go back on it, we will see. I was having some issues with my adrenal glands which were also causing insomnia and the combination was just too much.
I take 4.5mg of LDN for PsA and I am pain free
Christine,
Look into Ornithine 550 mg. It helps me sleep like a rock. and gets along well with other meds.
Hi Christine,
What dose of prednisone were you taking when you started LDN? … Thanks, Steven
Hi Steven,
This was so long ago (2 years) that I don't remember. I want to say maybe 10mg. It definitely want over 15mg.
Wasn't over 15mg I mean…
Thanks Christine!
Thanks for the information. I started Naltrexone today for the first time. 50mg. I've noticed it has gave me some energy and I can see the possible problem of insomnia. I'm taking it to help with opiat dependence. I'm really excited and hope this medication works for me! I've read a lot about it. Thanks for your information!
I'm pumped to be back on LDN…was on it for a few months 2 years ago. It is the best I have ever felt! I have chronic lyme, mold toxicity, unlabeled bad autoimmune struggles, etc. etc. etc. I'm restarting it this week – at 1mg this time. Last time I started it at 4.5 and literally felt like a nut-job for a couple of weeks with the insomnia. But, to give hope, the insomnia completely went away after 2-3 weeks! It was a miracle. I felt happy and able to cope with life. I am SOOOO excited to start up on LDN again. Hoping that starting at the lower dose and working up will help with the sleep. But hey, when you can't cope with life, sleep sucks anyway! It's worth a little more insomnia for peace of mind and body (as long as it eventually goes away). Speaking of insomnia, CerenityPM has helped me with that recently, when GABA, 5htp, etc. stopped. Also, Natural Calm magnesium before bed.
in all my reading on ldn science and stanfor university.. and elsewhere..its more than ok to take ldn in the morning. its thought we have tow periods of endorphin 2 amd and 2 pm…..
Im week 6 starting today on ldn.. I started at .5 for 2 weeks then 1 for 1 week and 1.5 for 1 week and then 2 for the last week. even at the .5 insomnia set in and it still is even if I take it in the am. ive tried melatonin 5htp Ativan clonazepam Benadryl I do take magnesium..and even bach flower rescue night all to no avail so now will talk to doc.
I suffer with fybro and chronic migraines. Does anyone know if LDN Works for both conditions?
I don't know Annymous, but am about to try it for both
I do not know if it works for fibro and migraines. I haven't seen research articles on either, but it is such a benign medication, except for the insomnia, that I think it is worth a try!
Now that I think of it, I rarely get migraines anymore when I am taking LDN….
Hello Christine, great blog! I take LDN with Savella and Topamax. I also take narcotics when needed but I do not take it two before or after taken my LDN. But thankfully I don't need narcotics as much anymore since being on Savella and LDN!!
Hi there! Thanks for the feedback. I have found my Tramadol use has decreased significantly since being on LDN and I also space it out, usually four hours.
LDN appears to have put my dermatomyositis (auto-immune disorder) into remission. Took a few months – dosage was 3.5 as I weigh 120 lbs.
At first it seemed to interfere with sleep, but that settled down and since I take it about 3 hours before bedtime (LDN Doctor recommended) it no longer causes insomnia, but seems to even help me sleep better now.
Like so many cases, mine may be anecdotal, but spontaneous remission with DM is quite rare.
Are you still using LDN? I noticed you mentioned you weren't having any anxiety anymore while on it. Has it continued to help with that? 🙂 I'm mostly looking into it as a potential treatment for my panic disorder and psoriasis.
While I don't think it helps my autoimmune symptoms as much as I had hoped, I think it does help a little with anxiety. It definitely helps with food addiction I think also.
For anxiety, I have gotten tremendous relief from taking a Mindfulness Based Stress Reduction Class (MBSR). I am finishing the class this week and it really has changed my life. Do a Google search on it.
I've been on LDN since June 1st 2016 I've worked up to a dose of 4.5 it's been almost two weeks at 4.5. I never had insomnia until I got to 4.5:mg dose I'm thinking about taking it later like around 2am. I take it at midnight and that was perfect for awhile I slept great no dreams just deep sleep. Now I after taking my LDN I stay awake until 3or4am. I feel tired in the morning. I use to be in so much pain skeletal pain autoimmune, Hoshimoto's thyroiditis,IBS, Neruoplacey, Fibromyalgia, tired all the time. I have so much energy I can work 8 hours no problem now and I'm 60 feeling 40 again. Thank you Dr. Berahi
How much do you weigh? I have PsA and weigh 112 lbs and my dose of 4.5mg feels a little high–shutting my receptors down for a little too long.
I'm on ldn…just raised my dose this week and had trouble sleeping…I wakeup at 4 am..should I just take it then???or do I have to be asleep for it to Work? Thank you
Leivy: you don't have to be asleep for it to work, but you need to take it at the specific hours to act as a blockage to the receptors. I think that is 9pm-1am, but I would Google search the hours to be sure.
I see this is an old post, but what is the dosage of ashwaganda???? I just started on LDN 1mg, slow titration to whatever up to 4.5 mg works for me…..thank you!!!!
Thank you so much for the tip about ashwaganda! I’ve been on LDN for a few weeks and have had insomnia. Gonna try it tonight!
Hi Christine. Just finished reading your book for the 2nd time and came here to your blog. Not diagnosed, but positive I have SS. I am 63 and had symptoms lifelong, but they really took off at age 40 due to a very traumatic life event. My Mom was finally diagnosed at 80 years old on her deathbed 8 weeks after diagnosis of – Non-Hodgkins Lymphoma. Anyway I saw a rheumatologist who did all the usual tests, which came out normal – said you are fine and sent me on my way. My GP does testing when I beg him, but so far all normal. He did agree to let me start LDN a few years ago for all my horrible joint pain, especially foot pain. It helps some. I titrated up to 3.5 mg over a few months as I am so sensitive to meds. Anyway, after reading your posts on LDN, do you think it’s possible I am having negative results on my testing due to the LDN? If it is helping reduce the autoimmunity, could it be? I am still trying to get a diagnosis, mainly so we can watch for cancer. I’ve dealt with pain and fatigue for decades. I’m sort of used to it. My Mom’s death was absolutely horrible and from looking at her doctor notes, she had been complaining about pain, nausea, weight loss, difficulty with appetite for at least 3 years prior to her (late) diagnosis. Her hospital chart said it would be very treatable except for her advanced frailty and deconditioning (of course due to late diagnosis). I don’t want that to happen to me. Thanks for all you do for the SS community and my prayers for your health. – Lynn
Hi Lynn! First of all, I'm sorry it took me so long to see this. I have been very neglectful of my blog the past 2 years and I don't get email notifications about comments because of all the spam.
In my experience and from the research I have done, I do not believe LDN would give you false blood test results. It's important to remember though that 30% of people who do have Sjogren's test negative on one of the antibodies and 60% test negative on the other antibody. have you had a lip biopsy done? It's not 100% guaranteed to give you an accurate diagnosis, but it is about as close as we can get I believe.
I am very sorry to hear about your mom and I don't blame you for being concerned about the possibility of having Sjogren's and the threat of non-Hodgkin's lymphoma.
Thank you so much for your positive words and for reading the book. Please feel free to reach out to me with any further question on the blog, by email, or on Facebook. Be well.