As I wrote in my last couple of blog posts describing my experiences with low dose naltrexone (LDN) to address some of my multiple sclerosis (MS) symptoms, my initial positive response to LDN seemed to wane when I increased my dosage.
Initially, I had the following response to LDN (more details can be found in the individual blogs linked at the bottom of this article):
- Very noticeable reduction in heat intolerance. I was able to be outside in the middle of summer (94% humidity and 95 degrees Farenheit), whereas the year before, even walking from my door to the car would incapacitate me for several minutes.
- A reduction in fatigue. I went from waking up tired and needing a nap by 11 am to being able to function fine without a nap until about 4:00 or 5:00 in the afternoon (sometimes even later), at which point a tiny little mini-meditation would revive me.
- Periods where I felt completely free of MS - I was clearheaded, had no parasthesia or fatigue - I just felt like I think people without MS must feel. These periods would last from 1 to 4 hours.
I was thrilled with this response on 3 mg of LDN taken at night. Since it seems like much of the research and case studies have pointed to an optimum dose being 4.5 mg for people without spasticity issues, I was eager to up my dose the additional 1.5 mg. Right as I was starting on my new dosage, I had a stomach/respiratory bug, so felt pretty terrible for awhile. This made it difficult to tell what effect the new level of LDN was having.
I gave my new 4.5 mg regimen 3 months. In that time, my fatigue returned to pre-LDN levels. I felt dizzy and nauseous. I looked in a couple of places and asked a couple of people and found that it was pretty common for people to find that 4.5 mg of LDN proved to be "too much" for them, so many took their doses back down to 3 mg (or whatever it had been).
I refilled my prescription with 3 mg, but there was a mix-up with the mail and it didn't get here in time for me to start. I had several days with no LDN and the dizziness lifted. By the time my bottle of 3 mg LDN capsules arrived, I was feeling okay. The weather got colder and I started feeling the benefits of that, too - more energy and overall, less MS-y.
Bottom line, I have decided to give LDN a rest for now. I am still on Copaxone. I think I will go through the winter and early spring LDN-free (my MS symptoms are always more mild in this weather), then restart the LDN at 3 mg, or maybe even lower. I know that many of you will be thinking that this is unwise, as there are claims that LDN can slow progression and that effects may be cumulative. That may be and I am not giving up on LDN, just taking a break to do some more research.
One silver lining of being off of LDN during these months is that I can take my cough syrup which contains codeine (LDN can NOT be taken with any type of narcotic). Without that, I am pretty sure that I would have suffered many sleepless nights, as this seems to be the winter of respiratory infections for me and my family.
What about you? Have any of you had a negative (or positive) experience with increasing your LDN dosage?
Read the full articles/blogs:
Personally I think giving up is a bad move. Many people benefit from much lower doses than 4.5mg, even as low as 2 or 2.5mg and some recent clinical evidence points to a benefit from taking LDN every second day rather than every day. So I would persist, lowering the dose, waiting a week or two on it and gauging how you feel.
For me with Crohn’s, I moved up from 1mg, 2mg, 3mg, 3.5mg, 4.5mg and in my rush to get to 4.5mg I only noticed that I had felt best on 2mg when reviewing my wearecrohns.org journals. So I then dropped to 2.5mg and had almost total remission from Crohn’s. My pharmacy here in Glasgow delivers LDN in a liquid mix, so I can control the dose. It sounds like a lot more hassle with the dispensing you are getting. Maybe best to seek out a compounding pharmacy that can do liquid like Dr Skip Lenz’ skipspharmacy.com?
Best of luck with whatever you decide to do.
I started LDN a few months ago, after having been on Tysabri for two years.
I’ve been taking 1.5 mg. It causes horrible sleeplessness for me, so I’ve taken my time trying to increase the dose. In fact, I dropped the dose down to about 1.0 mg for about 10 days. That really helped with the sleep issue. I went back to 1.5, tried 2.0 one night and the sleeplessness thing returned.
So for now I’m going to stick to 1.0 – 1.5 each night. I may take the occasional night off. But I’m burying the lede. Which is, I have felt better for the two months or so that I’ve been on LDN than I have the entire time I’ve been diagnosed (12+ years). My energy is stable, I don’t have the fatigue, I don’t have the sensory issues, and my omnipresent depression is just about gone. My bladder issues are unchanged, my cognitive unchanged (what helped my cognitive issues the most was the MS-Diet).
The change in energy is remarkable enough that I will stay on LDN as long as I possibly can – I hesitate to use the ‘m’ word, but it does feel akin to a miracle.
I’ve tried managing the sleep thing in various ways and will continue to. it is worth the effort to figure it out.
I thought I was going to be afraid to leave Tysabri, but it turns out I feel 10x better than I did on Ty. I love Tysabri – it served me well. And I’m really happy to have found something that is, so far, working well.
Good luck to you, Julie. I say follow your instinct about what is right for you, in terms of taking a break or not.
Hi Trish
I was reading your comments on this blog and wanted to know what the MS diet is? I have very recently been diagnosed with MS (this past Thursday). It started with vertigo, which I still have, but am getting acupuncture for and is getting better. I also have fatigue and brain fogginess issues.
I haven’t started on any of the drugs yet. I’m just trying to get informed about them and I had not heard of LDN either. Is it taken orally?
Please get back to me when you can and I hope you’re doing well
Denise Dowdy
Good morning. I’m so very glad you’ve found such a seemingly fantastic addition to your MS regimen. I was disapointed that my own doc would’nt write me a script so I too, could give it a try.
I must add, that I’ve been on Dr. Roy Swank’s MS diet, for the past almost 21 years! Sucessfully, I add! In April of 1989, I was given a near death sentance. They told me I had “in the top third of the worst cases they’d ever seen”. hmmmm. They said I had “three to five good years left.” I learned of Professor Swank in Portland Oregon. I became his patient for ten years. I follow diet diligently. NO PROGRESSION of the disease. I WISH more people would READ The multiple sclerosis diet book by Roy Laver Swank, & Barbara Brewer Dugan. I take NO DRUGS at all. Go to his website…google him, you’ll find all you NEED to live a good and healthful life. Over doing the energies, is something he strongly cautioned against.Please, please, please…take heed of this message. Dr. Swank lived to be 99 3/4 years old. He was a LEGEND…there is NO ONE, on earth that can claim (documented!) a 95% success rate with controlling the progress of this disease, but him. NO regimen, no drug, no anything. The work began in 1946 folks…it is lifesaving!! Donna
So happy you are honest with all of us, but I am sorry to learn of your decision. When I started LDN three years ago I read everything I could about it. It appeared to me it was a something that “worked” generally only over the long haul. I made a commitment (after using Copaxone briefly and hating the site reactions and also questioning the general theory) to give LDN at least two to three years.
I did have significantly increased muscle spasms, weird dreams and difficulty sleeping at first. But the benefits of vastly improved bladder function, overall sense of well-being and other improvements made it worthwhile. And after three years I have had virtually no progression and in fact have quit using my cane.
I could go on about my personal benefits, but the point I’m trying to make is I’m not sure you gave it a fair shot.
Here’s hoping you do well whatever regime you follow!
Apparantly the effects of LDN can actually INCREASE after stopping which is why some people believe it is better to take it intermittantly. This could be why you have started to feel better since stopping. I also believe that 4.5mg was too much for you and once the LDN has totally worn off and the good after feeling goes you should go back to 3mg. I wish you the best of luck with it all and as always keep us posted. (Also I would love it if you got tested/treated for CCSVI as I really value your honest posts)
@ Donna: I was wondering if I could email you? If you’re not comfortable with that, I WHOLEHEARTIDLY understand. I am new to MS (2009) and was just getting ready to start the Swank diet and would LOVE nothing more than to ask a few ?’s to someone who’s been following it regularly. If you wouldn’t mind me emailing, please let me know
email me at this address: grover7998@aol.com
much love to all fellow ms’ers.
Donna, I would also love to have your e-mail address so that I could e-mail you about your success. Please e-mail me as well.
Julie, I think it’s great that you want to do more research before continuing on LDN (or any other medication for that matter). That’s certainly the way to go. Keep up the good work, and good luck. Pam
I also stopped the LDN and have now started on 4AP also called aminopyridine. Better results with less side effects. I am hoping this is the answer to my balance issues. It has been 2 1/2 weeks and I can definately feel the difference.
I started on LDN in May 2009. I initially started at 3mg and increased the dose three months later to 4.5mg. The only adverse reactions I had were during the first 7-10 days of starting LDN, and again when I increased the dose. I mostly had headaches; However, I also became fatigued around 10-11AM and again around 4-5PM. Like I said, this only happened the first week or so.
I feel better than I have in years. Three months after being on LDN, I noticed I regained feeling throughout my body. I also became aware over the following months that I had less fatigue and more endurance to complete day-to-day tasks. I’m now able to walk longer distances. In November I was scheduled for a routine MRI. The results came back with good news: no new MS activity!
Some may argue that LDN is good for those with benign courses of MS, but that is simply not true. When I was diagnosed in 2006 with remitting relapsing multiple sclerosis, I had 10 lesions on my brain. Within 17 months, that number grew to more than 60. I’ve tried Avonex, Copaxone and Tysabri before LDN. To Tysabri’s credit, it did stop the progression of my disease. I was on it 20 months, but it also carries a risk of a deadly brain infection, which is why my neurologist and I agreed it was time to stop. LDN has picked up where Tysabri ended and kept me exacerbation-free. I am grateful for that!
There are a few things people should be aware of when using LDN. First, not everyone will do well at the “optimal” level of 4.5mg. It really depends on your body type and weight. There’s a link on the lowdosenaltrexone.org site that explains this.
Second, LDN is not a monotherapy, meaning used by itself. Diet is a huge factor, too. In order for LDN to work effectively, one must get rid of sugar, soy, gluten and dairy. All of these cause inflammation in the body. Many people with MS and LDN follow the Best Bet Diet or the Swank Diet like Donna mentioned.
Finally, LDN will not cure MS. Usually damage one has from the disease will not change. LDN can improve one’s quality of life and possibly stop the progression of the disease. For me, it hasn’t changed the fact that I have severe vertigo and cognitive fog. I suspect the damage caused to the pons area on my brainstem will not improve. I’m okay with that. I just want a reprieve from the exacerbations, and that is exactly what LDN has given me (just being up-front and honest).
I wish you the best Julie and I look forward to reading more of your journals! Thank you for your tireless effort in bringing awareness to many great topics affecting people with MS.
you make your own choices/ good for you
I think you are heroic for taking medications and writing about it to help another. May God bless you and keep you.
I have been on Tysabri for over 7 years and was part of the original combination trial with Avonex. I am seriously considering a change in meds and I am grateful for all the comments on LDN. However, it seems that all the data I can find is anecdotal. Is there data available from clinical trials? Tysabri has worked well for me. But I am starting to feel I have been on it for a long time and may find benefits in other meds. Would enjoy comments or reactions to this.
Thank you!
Barbara (8)
Spill! How did you get the 4AP? I spent hours several years ago trying to figure out how to get around waiting for it to emerge from trials, and gave up. Now I read that people have been on it for years – someone even mentioned a “sustained release formula.” (I’m so jealous!…lol)
I assume you’re getting it compounded? Do you mind saying what strength are you taking/how often? Where can I get more information to take to my neuro?
Thanks for ANY insight you can give me on this. I’m off Tysabri and on LDN now, on lots of supplements and following an MS diet. I think the 4AP would be a great addition to my arsenal!
Julie: I certainly defer to your wisdom on what’s best for you. We’re just all so different – no one of us can claim to know what’s right for all of us.
As Edith Ann was wont to say — “and that’s the truth.”
Pam…I need your email address please! Thanks!Donna
Hi Donna. It’s ubluem@hotmail.com. I look forward to communicating with you. Pam
I have been doing 4.5 ldn since May of 2009 and did try to decrease to 3 but the 4.5 worked much better for me – I have never felt better – bladder issues are a thing of the past (within reason) and while my walking has not improved and I am not ready to throw away walking aides, I feel great. I am also real interested in the Swank Diet – I am one who every other disease modifier, Tysabri, Copaxone, Rebif, Avonex, etc., has failed and with bad consequence to me. But waiting anxiously for the fampridine-sr (?) to help the walking thing so I am all for ldn – for me, the high dosage seems to work – I didn’t do well at all on the 3 so not sure if I would need to be even less than that – never heard of the liquid form, though- I get mine from Irmat’s Pharmacy in NYC.
For Donna -
what do you eat when on the Swank diet/are you also wheat free
nancigamba@comcast.net
I want to thank you for writing about your experience with LDN. I convinced my neuro to give me a script for 3.0 mg about 3 weeks ago. The biggest change I have found is with my energy level. It is so much better most days. I don’t always need a nap and have even experienced not being extremely sleepy after 9 p.m. (like tonight). My husband even thinks I’ve been much better. He says I laugh easier and deeper and seem to be enjoying life more. I appreciate your being candid with your experience. While it’s not worked out for you at the moment, you gave me the confidence I needed to try LDN out. I hope to keep getting better on LDN, but I know it’s not always guaranteed. Namaste!
Mark,
Incidentally, with respect to anectdotal evidence, I understand your concern but one of the main figures I always cite with respect to LDN and MS is the LDN Research Trust survey of
600+ MS patients – 94% reported an improvement in their symptoms, better than figures for Tysabri.
To me that speaks volumes, trials or not.
And the simple fact is that Naltrexone is a very old drug with a long history of safety at more than 10 times the LDN dose and with virtually no side effects. Whilst I do not encourage anyone to try it without consulting a doctor, I honestly believe there is nothing to lose in trying LDN.
Myself, I have achieved as good a remission from Crohn’s symptoms on 2.5mg LDN as I ever did on mesalazine – which incidentally, robbed me of 50% of my kidney function with its side effects….
Bob,
Thank you very much for the information. I will look into the LDN Research Trust Survey. From my perspective, I do put stock in the observations and experiences of others. As it turns out, I have another urgent health issue to manage right now that is unrelated to MS. When I am through this, I will discuss LDN with my doctor.
Your body your decision Julie. Best of luck.: ) I started taking LDN in Sept 09, started at 1.5, had trouble sleeping for a few days, moved to 2.5 and have slept like a rock since. My LDN is compounded in a liquid form. I have had complete relief from 99 percent of my symptoms since starting: my balance issues, fatigue, dizziness all gone, bladder normal, it is amazing…my tinitus is intermittent and for the most part I feel normal. I may move to 3mg but only if I start to decline. I had a scrip for Copaxone but never started it. I daily take Vitamin D and B6 and 12, Cerc(increases blood flow to the brain, an anti dizzines med), and and with the recent theory on CCSVI (impaired blood flow) I have started taking a low dose aspirin every other day. I feel good and am thankful. I am going for the MRI and vein imaging testing for CCSVI in January. I am also looking at donating blood to get rid of the iron in my blood but they may not let me…so I am now taking green tea every day to naturally Chelate (remove) iron from my blood. These are the only ways to remove iron from your blood as I understand it. Iron combined with the reflux of blood into the brain is the theory of MS type damage in CCSVI.I am looking forward to your info on CCSVI and to the results from the Buffalo study, that will apparently be available in February. Exciting times,best health wishes to all.
Best of luck Mark, hope you get over your condition and make some headway with LDN on your MS sir.
All the best.
I have just been diagnosed and I am scared to death. I could really use a friend who understands. Rmcelhone@comcast.net
Thank you, Bob. Fortunately, my Primary Care Physician detected an aortic aneurysm before it became too large. Will have heart surgery next week. Is there any information on major surgery and the impact it has on MS? Might be a good topic for us (Me?) to understand more completely.
about 4-AP: i have been on it since years (five) beware of its epileptic risk
Hi Mark,
I’m afraid I might know a fair bit about LDN but I am no expert and certainly not one on MS sadly.
I hope your surgery went well and you are recovering well sir.
Best wishes.
Cheers,
-Bob T.
I just increased my dose of LDN to 3mg and on the second night I drank copius liquids and urinated frequently. the next day my husband who is a type ll diabetic, took a blood count and the monitor gave a “H” reading, he took it two more times still got the H reading …called Accu- check they said that the blood level monitor goes up to only 600 and then gives an H reading …my blood level is usually 90………I have never had problem with high blood sugar! ended up in the ER and they were all stumped…. bottom line they gave me a shot of Insulin…….question has anyone had the same effect from increasing LDN….help:(
what about Nutriferon by Shaklee? This is supposed to increase the body’s natural interferons. 4 tablets a day is recommended. Not covered by insurance , but if it works what the hey. My neuro nor primary will o.k. LDN.
Lee
What about Nutriferon by Shaklee? four tablets per day. My primary nor neurologist will o.k. LDN
I started off with 3mg with excellent benefits for pain, urinary problems and fatigue. In the last twelve months I have not had an MS attack. I also found taking 4.5mg was NOT as effective as many of my symptoms worsend so went back to 3mg and within a couple of days symptoms improved. I believe 3mg is the optimum dose for many people. Infact Dr Bob Lawrence says the dose can vary from person to person. I also believe that by taking the drug regularly it helps stop progression.
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What a great resource!
You should go back low and slow as pointed out earlier (and maybe every second day)
I hope one of my MS brothers or sisters can help me. I’m looking for a DR in South Carolina who will prescribe LDN for me. I’ve been wanting to try it for weeks. I have been through two DRs and apointments. I hate to pay them to hear “we don’t prescribe that”. I’m MS tired (I think y’all know that one) and not in the mood for more hoop jumping. If anyone can help me find someone in the state, or close by, to write the prescription and suggest a reliable place to fill it, I will be greatful, a little less frusterated and hopefully on the road to making some progress. I’ll be glad to share what I learn.
From all my reading so far, it looks like good blood flow or circulation may be an important factor. The MS diets that seem to see success all look Heart and blood vessle healthy. Asprin and some of the other beneficials we hear about and use thin the blood and improve its circulation. Exercise, vitamine d for vein health, the Italian procedures, etc. seem to indicate MS isn’t all caused by the autoimune system many DRs are stuck on. If LDN only makes us feel good enough to get more exercise, that could be a critical part of treatment for this MS. Please, help me find an LDN prescription. I’ve had a few years of hopelesness with the interfearons – I finally see some hope here. This type of site helps us all see hope. Getting a prescription shouldn’t be this hard.
Thank you all for sharing your thoughts and listening to mine.
My Dr. said O.K. to 3mg LDN and I’ve used it for the past 4 nights. Objectively: no difficulty sleeping, decrease in # trips to the bathroom to pee (from 4 to 1), big increase in muscle tightness in fingers, forearms, to elbow on day 2 but bit better yesterday and even better today, energy good till around 6pm but on day 1 had big “crash”but no energy”crash” since, moderate spasm in R leg on day 3 (which is rare for me) but none today, mild headache every a.m. but goes away on it’s own. Most important thing I can say is the morning after my first pill, I awoke with a clear, peaceful feeling in my whole self and throughout the day found I was clearer in my brain. I said to myself that I didn’t realize how “cloudy” I had become till I got it back!
I know I need to evaluate it for at least a few months, but I am Definitely looking forward to it.
Am also on Copaxone. Have taken it for 10 mos. Took me years to bring myself to get on anything for my MS because even though I knew I had it, none of my research found something that sounded like it actually worked. After 10 years or so of living with RRMS, I decided on Copaxone. I am doubting that I am part of the 29% that it works for so decided to add LDN.
To the person asking for a Dr. who will prescribe LDN, you really don’t need it. You can get 50 mg pills without one from Canada, Mexico and India. You’ll just need to add the pill to 50 ml of water and dose yourself. People demonstrate on YouTube. Google LDN + no prescription and you’ll get tons of info on recommended international pharmacies (which I was all prepared to do expecting my neuro to say no to me when I asked for it).
Thanks for letting me share. Looking forward to a happy, productive relationship with LDN!
I’m a little late to this party but have a suggestion for Julie. Go to ldnscience.org and seek the Dr Ian Zagon interview.
Actually you can take your codine cough medicine at bedtime and take LDN the next morning. Yes it would block the opioid receptors but you indicated it was a night you needed them.
Hi,
Once again thanks so much for your blog, it is so helpful and informative.
Just wanted to share my experiences with LDN. I first took LDN in 2006, I stopped after 6 months as I wasnt feeling any obvious benefit. Despite my Neurologist refusing to write me a prescription for it, but thanks to my GP, I started it again in September 2009. I was averaging 3 relapses a year and they were managed by oral steroids, although I think the effect was waning. I am not on any other drug programme, although I took Rebif for 6 months in 2005. My last relapse was in August 2009, just before starting back on LDN. I can not say by any stretch of imagination I am cured, but I can say that I dont have the MS fatigue that used to floor me. I have more energy and my mother who lives a distance away, said to me the other day I am doing better than I was 2 years ago. Sure, I get tired, but not as often and not as severe. I am still using my stick to get around, but have not had steroids for a year. My experience with LDN has been extremely positive, and I would recommend people give it a go, if at all possible.
Donna–
Thank you so much for your encouraging, inspiring words on your experience after 21 years of the Swank diet! I copied the message and printed it out. I was Dx’d almost three years ago and have been doing the Swank/McDougall diet since then and have not had another relapse since then. I’m hoping for results like yours. I have questions about your experience with what’s observed in MRIs while on Swank.
Thanks much:
Linda: lvixie@comcast.net
I was very interested that the Naltrexone helped you with your body overheating. I have Dermatomyositis, an autoimmune disease that came with Inflammatory Breast Cancer. I am now 5 years cancer free, but am on Imuran, Plaquenil, and Prednisone. I was also on Methotroxate (chemo) with all of those for a while. If it gets over 70 degrees I am totaling overheating. I get the Lupus red rash on my face. My skin blisters all over in 2nd degree burns from the inside out. I can’t take the sun. You said you body settled down from heating up. I see my Rheumatologist in June and am wondering if I should ask about it. Has anyone else had Dermatomyositis and used Low Dose Naltrexone?
Does anyone use Naltrexone for mild OCD symptoms, like picking?
Major thankies for the article post.Really looking forward to read more. Keep writing.
I also think it`s a shame you stopping so early in the journey especially as you reported so many benefits! Once you stop the LDN, so will the benefits stop. I`ve seen people report new benefits up to a YEAR so even if you think you are doing well, giving it more time quite often results in feeling better and better. Plus stopping will only put you at risk for progression.
My husband has been taking 4.5mg of LDN for 7 years with NO progression and no flares or relapses. Never taken any of the CRAB drugs…overpriced and over toxic in my opinion. Plus he rarely gets a cold or flu or any bugs that make the rounds.
If 4.5mg is too high a dose and you experience unwanted side effects then you just lower the dose until you feel OK again. I always feel concern for people that stop – once you get new disabilities you are stuck with them. To take one pill each night is such an easy thing to do but unless you keep taking it, it cannot help you.
I also want to encourage anyone interested in trying LDN or even those already on it, to join some of the many online groups. To share stories, offer and receive support – those things are invaluable when battling any disease.
Just because most of the evidence is anecdotal, it does not mean it`s not worth a try. In my husband`s case, it`s more than that as he has an annual MRI and there is evidence of no new lesions. Plus the fact he still walks unaided.
There may be no noticable symptom improvement but if you can slow down or stop the progression, that in itself is amazing. Eating heathy food (cutting out gluten helps) and keeping your body strong with whatever exercise you can manage (yoga is great for strength) are all things you can do to help.
Joining one of the many online groups – Facebook and Yahoo to name two – will also help anyone looking for information as to how to find a prescribing doctor. That information is out there so get proactive and search it out!