Julie's Low Dose Naltrexone Journal: Month 6
There is bad news and good news to report about my experiences with low dose naltrexone (LDN) to help with my symptoms of multiple sclerosis (MS). As those of you who have been following my LDN journey know, I have relapsing-remitting MS and have been taking Copaxone for over 3 years. I began taking LDN 6 months ago, starting with a 3.0 mg dose, which I increased to 4.5 mg after 3 months.
Here is the bad news: I really don't feel like the LDN at 4.5 mg is helping me much these days. I feel pretty much like I did before I started taking it. I have fatigue that I wake up with and that can really bring me down by about 10 am to a barely functional level, requiring naps to just get through the day. If I exercise, I can make it until about 1:00 in the afternoon before I need a nap. My cognitive issues have really been interfering with my life the past 6 weeks or so and seem to be increasing.
Here is the good news: I am not giving up on LDN.
I heard from some people that increasing to 4.5 mg actually made them feel worse and that going back down seemed to help. I called the pharmacist that has been compounding the LDN for me and he confirmed that many people have had this experience. He said that the biggest problem people noticed when they upped their dose was increased spasticity, but that other symptoms often got worse as well. The pharmacist said people often kept adjusting the dose until they got it "just right," and that for many of the people that he served, 3.5 mg was an optimal dose that was arrived at by trial and error.
I am going to go back down to 3.0 mg and see where that gets me. I actually have already started the process by hacking into my capsules with cuticle scissors and pouring out a third of the powder last night. Not the most scientific way to go about this, but I am a little desperate.
I should say that there have been factors that could have interfered with how I felt overall. I have had several little infections since my daughters started school in August, which culminated in a big respiratory illness requiring antibiotics that kept me sick for about 3 weeks. The weather has been crazy, with differences of 30 degrees from day to day. I have had tight deadlines, followed by periods of calm, interspersed with external demands. In short, my life has been like most other people's - rocky and unpredictable at times.
I will keep everyone updated on how I am doing with my new dose. Has anyone else had the experience of increasing their dose of LDN, then decreasing it with good results? Please let us know in the comment section below.
Read the full articles/blogs:
I’m kind of curious as to why you’re still on Copaxone. My wife came off 20 months of Tysabri in May and has been on LDN exclusively ever since with no flares, a return of sensation almost everywhere in her body, and increased energy. Her regular neurologist wanted to put her back on Copaxone, which she was on prior to starting Tysabri, but she refused and the director of the UCSF MS Center backed her up. Sherri had numerous flares while on Copaxone. She has already made up her mind that she’s not going back on it no matter what. Don’t be afraid to tell your doctor “no.” At least so far, it has been the right decision for my wife.
Dr Bob Lawrence addresses the issue of dose in his interview with Mary Bradley Boyle on her Blob Talk Radio Show of 9-29-09. Dr Lawrence said it is a very individual thing working out the proper dose.
Dr Ian Zagon also comments in his interview 6-23-09. Both interviews cover pertinent points of adjusting dose.
Zagon refers to skipping one or even two days between doses as being optimal for some people once they reach a plateau. The adjustment process can take many months before you know when you have found the maintenance dose that works for you.
I created a list for people to discuss starting with very low doses, 01. to 0.5 mg and the practice of skipping days between doses for people who experience intolerable side effects at the suggested starting doses that most people tolerate. With time some people do work up to 3 or even 4.5 mg but the start lower and progress much slower than 90% of the people. Some report benefits at 0.5 mg which is not the usual effective dose according to Bihari. Maybe some of us are different, no one knows at this point but it is worth exploring before giving up on LDN.
The new list is called Very Low Dose Naltrexone on Yahoo.
groups .yahoo. com/group/Very_Low_Dose_Naltrexone
Because some members of various LDN lists wish to only discuss the Bihari protocol this was making it difficult for those who fell outside the “norm” to discuss their problems. Much has been accumulated on this new list in a short time about the various dosing regimens. Many with CFS need to start out lower than most, but it is only by trial and error that this is discovered.
groups. yahoo. com/group/LDN_Information is a list created for its Links and Files section only. It is not a discussion list but a resource list, with many LDN resources in one place for convenience.
Good Luck with adjusting your dose. Zagon has said that too much can actually block the benefits of increased levels of endorphins presumable by blocking the opioid receptor for too long due to tissue accumulation of LDN.
Hi Julie
The dose is usually 1.5-4.5mg and it is quite correct that many people find the lower dose works best. Also, have you ensured your vitamin D is above 150nmol/L (60ng/mL in US). One of the great benefits of that is that winter infections are a thing of the past (good research on this), apart from reducing relapse rate by 2/3 (see http://www.takingcontrolofmultiplesclerosis.org/whatsnew_detail.php?ArticleID=76). Most of the people that have begun my program of diet, exercise, vitamin D, and stress reduction report that fatigue is no longer a serious problem too.
Be well
George
Julie,
I have enjoyed reading your diary with the LDN. I’ve been on 3mg. for 1 year this month. The only thing I’ve experienced was a UTI in the spring only because I was put on medication for my bladder. As you know alot of MS suffers struggle with that problem. So bladder meds are out for me. Have to agree with George about Vitamin D. I’ve gone from 7 flares over 2 yrs to none since I’ve been on LDN. Keep us to up to date on how you are doing.
Be well.
I have been following Georges regimen for a year and I don’t have MS-type fatique anymore
I jumped right in doing 4.5 LDN – I am getting ready to back it down to 3 because I am very spastic and my muscles lock up but for the most part, I am so pleased with LDN I can’t stand myself. But I think 3.0 will be MUCH better for me than 4.5 but again, I do not know because I jumped right in. Keep the faith! Go back to 3 and get OFF the Copaxone – that is probably what is making you not enjoy the full effects of the ldn!!!!!!!!!! I got my brother on LDN and he stopped his Copaxone shots and while he has only been on LDN for a few weeks, he can feel the difference in being off Copaxone – he doesn’t feel drained and wore out – he has PPMS and is very much handicapped but he is feeling far better just being off the shots – I feel great myself but I tried everything and all failed with bad permanent results so NO MORE NEEDLES for me – LDN is proving to be very effective for me although I think it will be even better once I lower the dosage.
I stopped using LDN a year ago because the muscle spasms I had in my affected leg and foot at night became unbearable and I wasn’t sleeping. Like all people with MS I need sleep! I backed down the dose to 1.0 and switched to the cream form that you rub into your forearm. Nothing seemed to work and the spasms and rigidity remained. I have been using the Bioness L300 for 3 months now and it has really improved my walking and the circulation in my right foot. It also has improved the spasticity which seemed to be getting worse.
I am going to give it a few more months and try the LDN again. There is so much more information and conversation about LDN then when I started that it is really heartening. I also started LDN when I was on Copaxone but felt much better when I stopped the Copaxone after 6 mths of LDN.
I think you shouls join the LDN Yahoo group – you’ll find plenty of suggestions and a huge deal of help from group members to ensure you’ll get as much success as possible from LDN.
Rachael
Dear Julie,
I have enjoyed reading your diary with the LDN. I have never heard of it before reading your articles. My MS support group last Saturday had a guest speaker come and give us an up date on what is new for the treatment of MS. He was Dr. Daniel Wynn and his nurse Kathy. He gave a great talk.Dr. Daniel Wynn is the Director of Clinical research for Consultants in Neurology in Northbrook, Illinois and Co-Director of the MS Center.
He said by this coming Spring that there might be a pill to take instead of getting those shots or IVs.For the person that just been told they have MS. It can be used for the early treatment. He dose not talk very good about Tysabri. There have been an increase in cases with PML. But he said it is up to the person to decide to take or not to take. This is just a little bit of the talk that he gave.
I wish you the best in getting to the right dose for you. I know when you have a lot on you that causes a lot stress and that is NO GOOD. Stress will take all of your engergey right out of you. I like your articles a lot and keep up the reports.
Take care and God will help you. HE is always at your side.
You and I started on LDN around the same time and I have to admit I am not finding much noticeable benefit from it. There have been 2 changes that I attribute to LDN, one fasciculations are much better and the second is really silly but there is an marked improvement in my handwriting, which had really gone to pot.
My hope when I started, was that it might do something for fatigue because none of the drugs that I tried helped at all ( Ritalin, Dexedrine, Alertec and Amantadine). It has not helped but who knows when I have my next MRI there may be a change. I will not know if it is because of the Copaxone ( I am injecting every second day now) or the LDN but I will continue to take it for a while yet, I am not ready to give up.
Barb
Julie, 22 yrs w/ M.S. 3.0 8 weeks ago. 4.5 4 weeks ago. Too strong. Back to 3.0-Happy! No other medication besides eastern herbs from my acupuncturist and brace from Otto Bock. Good luck! Jenny
I have just finally convinced my neuro to give me a script for LDN and he did not even try to hide his disdain, smirks, and even mutter a couple of “snake oil” comments. However I wasn’t above a little strong arm tactics myself so anyway he reluctantly wrote the script and after quite a bit of false starts found a compound er so am anxiously waiting my meds in the mail. I so hope to get at least SOMEthing positive from all the work to get it. OK, I also want to be able to tell my neuro”Told you so”!
Julie,
If it’s any help, I’m also currently experiencing some turmoil, a vague sense of significant (noticeable) deterioration in general disease stability. I honestly think it’s related to the change in seasons.
(I got off Tysabri (after 17 mos.) in May and started LDN (at 4.5) in June, but will decrease to 3.0 tomorrow – and I’m also back on methotrexate [for psoriatic arthritis, actually, though it is also used for MS]).
Thanks for the update. I’ll be looking forward to a report on how your experience reducing your LDN goes.
Good luck, and Hang in all!
Hi Julie
I see Dr Tom Gilhooly in Glasgow, and in fact saw him last night and had a good chat. I, like you felt i was getting worse, but Dr Tom has told me to reduce my ldn. I’m taking 2mgs just now, but was told to go back to 1mg, which i was great on.
The thing to remember is, it’s not ‘the more the better’. It’s whatever suits you. I’m starting back on 1mg again tonight (oh, meant to say, i’ve been on ldn since August last year). So i’ll be interested to see how you get and i’ll let you know how i get on.
Take care and keep well.
Gayle x
This comment is to Lavonne – you have a crappy neurologist if he said that to you – I have a wonderful new one – he is willing to let me try anything I want to – the other one was not – this one is AWESOME and he is one of the top 4 in the Southest so I am most blessed – he speaks at the National MS Society functions and everything – I can’t say ENOUGH good about him and he doesn’t snicker at ANYTHING!!!! and was most willing to let me do this. You might want to get you a new doc!!!!!
Hi Julie,
This is starting month 7 for me. I am on 3mg — have always been at that dosage. I do think I was better when I first started with a plateau effect now. Overall I feel good though, maybe I don’t know what bad is anymore! But I embrace the thought process behind LDN and am doing OK at making myself slow down in general to accomodate things as needed.
I will be curious to hear what happens once you reduce back to 3mg. Also, a woman in my MS group takes 2 baby asprin a day and swears by it for fatigue — if you google this you will find a ton of research going on with Asprin. Another thing your doc won’t tell you but your grandmother might!!
Good luck Julie, I’ll be waiting to hear.
Best, Mona
Julie
Why are you still on Cop? I was on Betaferon but as far as I know when you start on LDN you have to stop all CRAB drugs?
Sorry to hear about your relapse but I have been on LDN for 5 months and am also battleing at the moment.
Keep us informed!
Sandy
I second Lee White’s comment. Why are you still on Copaxone? I believe it is a very outdated drug. I was on Copaxone for two years after I was diagnosed with MS. I then switched to Avonex, which was a huge mistake. I had seizures and basically felt as though I had the flu for two days a week. I was medication free for 2 years because there really weren’t any other options I was willing to consider. So, I went on LDN and had great success. I had increased energy, improved balance and movement. But, it doesn’t treat MS – just the symptoms.
I have switched to Tysabri and have been on it for two years. I have realized amazing results ranging from improved balance to increased energy and function. Before I started Tysabri I could barely make it through an 8 hour work day. Now I work up to 10-12 hours a day (I have a very demanding job), work out for 1-2 hours a day, and have a very active social life. Before Tysabri I was laid up in bed, 20 lbs under-weight, and my mother was taking care of me.
I am still on LDN and can report that I do not have any side effects at all. It still helps with my balance and energy @ 3mg.
Please kick your Neurologist in the ass and tell him to get with the program. He needs to put you on Tysabri. It saved my life and could possibly give yours back to you.
Julie, we really appreciate your willingness to be so candid. I have PPMS and was diagnosed in late 2006. Started on Copaxone, which I hated because of the site reactions and because I wasn’t sure I agreed with the theory behind the drug. Although I have great insurance, I also objected to the cost of Copaxone on moral grounds. Stopped it when I started 4.5 LDN in early 2007 and have been on it ever since.
The improvements in bladder function, mood, fatigue, muscle spasms, ability to walk (now without a cane), numbness and other symptoms are marked. The change, however, is very subtle and gradual day to day and even week to week. Over these three years on LDN, there were times when it seemed I went backwards, especially in the first year and a half. But I was committed to using it for at least five years.
I have been getting daily exercise for almost 25 years, starting with a 20-minute walk that is now a 50-minute walk. I NEVER miss my exercise. Several years ago I added in about 10 minutes a day of meditation. I believe both the exercise and the meditation are CRITICAL to my success with LDN. It’s a huge time commitment that often is not “convenient.” But totally falling apart is a lot less convenient! I believe even with LDN that would happen if I stopped.
Hope this helps you. . .Alexandra
This is for Morgan: You mentioned that you use Tysabri along with LDN. Don’t the two counteract one another, as with CRABS?
I stopped Betaseron several months ago to go on LDN after reading about it on Julie’s site. Started at 1.5 mg then 3mg and finally, 4.5 mg. The 4.5 made the spasticity so awful that I could no longer go to yoga. Now I am going to 3.5. If that is still too much, I will go back to 3 mg.
Thanks to all for your comments. I guess we work this out by trial and error.
The benefits sought from Vitamin D and low dose aspirin can be obtained with less risk via increasing intake of essential fatty acids from various sources – diet and/or supplementation – with particular emphasis on sources of Omega 3.
Much has been learned about LDN through the altruism of patients freely sharing their LDN experiences with others in a formal, structured way, and this has resulted in many more learning of and benefiting from LDN.
Sorry to hear about the LDN. Tried it twice and gave up! Really really wanted it to work for me!! I am also on copaxone and have been for 14 years. Good news is I have only ever had two exacerbations. Bad news is with age what I have impacts my life so much more! Seems the leg wants to drag more and more – the hand becomes less and less cooordinated and the fatigue is now something I know too well. We all know too well this disease is an incredible challenge to live with
I just wanted to thank you, Julie, for documenting your experiences. I was diagnosed w/signs of early MS about a year. LDN is the only drug I’ve taken–and want to take–God willing. After titrating my dose, beginning at 1.0 mg in early September, I am now up to 4.0 mgs as of last Friday. I seem to be doing OK. I do sleep much better on LDN–much more soundly. The other thing I noticed was some increase in stomachaches — but that could be from all the vitamins/supplements I’m taking also. I also eat as gluten-free, sugar-free, dairy-free, and wheat-free as possible under the supervision of my nutritionist. Thanks again!
Hi Julie,
Hope the decrease in dosage helps! One thing that struck me is that you said you had been on antibiotics.. have you done any research on Candida Yeast? When you have an over abundance of yeast in your system, it keeps the LDN from working properly.. and antibiotics will definitely increase yeast! You’ll see lots of information on the Yahoo Group about candida.. or google it and LDN. Also, keep in mind that LDN is not for symptoms you’ve already had – it’s to stop the progression so that no new symptoms show up! Not everyone is lucky enough to get symptom relief, but still find MRI to MRI that their MS does not progress and that’s the most important part!
,..] ms.about.com is another useful source on this issue,..]