Anyone take this? After reading an article I think I’ll ask my Neurologist about a script for it. The research is not specific to MS but the cases presented seem promising.
Any input would be appreciated.
Becky
Low Dose Naltrexone LDN: Anyone take this... - My MSAA Community
Low Dose Naltrexone LDN
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Becky63
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Becky63 I have never heard of this so I had to look it up. I couldn't find anything for MS issues but Drugs.com says it blocks the effects of opioid medication, including pain relief or feelings of well-being that can lead to opioid abuse. An opioid is sometimes called a narcotic. Naltrexone is used as part of a treatment program for drug or alcohol dependence.
Naltrexone is used to prevent relapse in people who became dependent on opioid medicine and then stopped using it. Naltrexone can help keep you from feeling a "need" to use the opioid.
Naltrexone is also used to treat alcoholism by reducing your urge to drink alcohol. This may help you drink less or stop drinking completely. Naltrexone will not cause you to "sober up" and will not decrease the effects of alcohol you recently consumed.
The link to the article is here: drugs.com/mtm/naltrexone.html
I read through the drugs.com and it refers only to opioid addiction and treatment. Nothing about it’s potential to help autoimmune diseases in lower doses. That is what Becky63 and I are discussing. See next comment.
I've been taking 3 mg LDN for about 2 years, It works!
CalfeeChickCommunityAmbassador
lowdosenaltrexone-noreply@yahoogroups.com
I've joined this group and learned a great deal. I suggest you join and read many of the group comments. This is something is high doses (50mg) is used to fight opioid addiction. There is a great deal of support in trying it in lower doses for many auto immune diseases including MS. One thing I read, and you should take into consideration is that it is not approved by FDA in lower doses AND going through your own doctor and health insurance could possibly put a comment in your health record that you are requesting something approved only for fighting opioid addiction!
It is so frustrating that there are so many possible treatments out there and for one reason or another we suffer.. Sign me up for these trials, at least I'd feel like I was contributing to finding a cure!
Wow. That is crazy. They may be reconsidering with all of the opioid crisis happening now!
• in reply toBecky63
I have moved a couple of times since starting LDN so I have different doctors now. Physicians are aware of the dosing for opioid addiction and would know that someone on 4.5mg of naltrexone isn't taking it for opioid addiction. As a matter of fact, I injured my back a couple of years ago where the pain was so severe that I had to take percocet for a couple of days, and it worked. That small dose of naltrexone did not block the opiate effect. But like I said, a trained health professional should be familiar with the dose of naltrexone that is given to block opiates (50mg).
Becky63• in reply to
Thanks. I figured that was the case. How did you get your initial script?
• in reply toBecky63
After the meeting where I met the neuro doc who said that he did prescribe it, I made an appointment to see him. I had read Dr. Bihari's suggested protocol so I wanted to start at a dose of 1.5mg. I told the doc about my review of Dr. Bihari's research and asked for a prescription for 1.5mg and he prescribed it. I took 1.5mg for a month. The next month I asked to be increased to 3mg. I think I stayed on 3mg longer - maybe 5 or 6 months because I was doing well on that dose, then went to 4.5mg which is the dose I've stayed on. My primary care doctor writes the prescription for me now. I get a 90 day prescription with 3 refills, and have it faxed to my compounding pharmacy in Florida. It is not covered by insurance, but it's about $75 for a 90 day supply. It's an older, cheaper drug, which is why the pharmaceutical companies won't do any trials. They aren't making a killing off naltrexone. Please feel free to private message me if you want more specific info. I'm not sure if I can mention specific doctors or pharmacies on these posts.
So, you have not tried it?
Oh and reading about why there hasn’t been more research is due to $$$. Not cost effective to only be giving medication that is around/less than $1 day!!! So no trials in the future....
LDN doesn't cost much, you just need to find a pharmacy that makes compounds, and see what dose works for you. I started from 1.5 and then changes to 3 in several months, have been on it over 2 years
at the cost of $20-30 for a month supply, you don't need insurance to cover it.
I’m seeing neuro tomorrow! 6 month check up. There will be allot of meds talk. Did LDN relieve Numbness and tingling, leg stiffness and spasms? I’m going to ask for LDN RX. Make decisions after talk tomorrow.
This article is excellent!!!
suzycohen.com/articles/the-...
Thanks to
undisclosEd for sharing it!!
My neurologist sent the script to CO pharmacy on Friday. I’ll get it later this week. $53 for 90 supply. Starting out at 1.5 and then progressing to 3 mg. Cheapest script I’ve had🎃
Oh, I love that! Please make updates. Msg me if needed.
Will do!!! Are you able to print out material to take with you? That might be good. Especially that last article. It’s a pharmacist writing. Really easy to understand!!! So surely the neurologist could read that fast😊
As soon as this huge kitty of mine gets off my legs, he came in about 3 hrs ago, threw up a bunch of grass blades, then as I usually do babied him and he hasn’t moved of me yet. Not sure which is us is the boss😃😻I’ll be up printing a bunch of info. Been doing research on phone.
I can't tell you about these specific symptoms, I just feel a lot better
CalfeeChickCommunityAmbassador
No, I am going to discuss though & request at neuro appt next week. There are doctors online that will prescribe and compounding pharmacies that will prepare for you. You have to pay out of your own pocket, but won’t have on your health records.. Health insurance companies DO Check you out when you’re applying for ins. no matter what the laws say.
The site I listed has compounding pharmacies listed. They did not advertise themselves.
I just talked to my Neuro’s assistant and he took down the info since it will be some time before I can get into see him. I’m hoping this will work out!
I didn’t find any drs online that will write scripts for anything other than regular, everyday type problems- sinus, uti,etc... I’m sure there are somewhere.
• in reply toBecky63
I tell all my docs that I take LDN and they have it on my med lists. My insurance company does not cover it so I pay out of pocket. I've never heard of anyone prescribing it on the internet. Be prepared - some doctors are more aware of LDN than others. If your provider isn't someone who is willing to think outside the box, they may not know much about it or be willing to prescribe it. That's why I changed providers. This is my life, I'd researched it. There is no down side. If you are taking naltrexone in larger doses you have to watch your liver function, but not at the miniscule dose in LDN. There are a list of pharmacies that mix it to Dr. Bihari's specifications and I use one of those pharmacies. You might check with a functional medicine doctor of your neurologist doesn't want to prescribe it. They are more educated on other modalities for treatment than big pharma encourages. But ultimately you have to educate yourself and make your own decision. I'm a health professional myself and one thing I've learned having MS - it's all theory until you're walking in it. I respect the training my doctors have received and I listen to them and look for their guidance, but they don't have MS. So if there's an alternative treatment with no down side, I'll want the freedom to make the decision to try it or not. I don't expect my neurologist to buy into it if they don't understand it because they haven't researched it, but I do want a neurologist who supports my decision to try something new as long as there is no potential negative side effect. If I find myself with a neurologist who won't support my right to make my own decisions, I move on. But that's just me.
Becky63• in reply to
Yes Ma’am Agee Agee Agee. I just heard back from my Neurologist’s MA. He said he is interested in it and is checking some more things out but he did have the Assistant call the CO pharmacy!!! Yeah!!! That’s what I want. I’m pretty sure he will go for it. He has always listened and I have done my research and presented it with all good things said. Actually nothing negative- you did mention liver but not at these low dosages!
I feel like someone else asked this a week or so ago!
CalfeeChickCommunityAmbassador
kdali yes, someone did and that got me started researching. At the time, I’d been in contact with dr’s office because my most recent Rx for Spasticity wasn’t working. So when I asked about it, he said we’d discuss at next appt which is next week. 😊
The CO pharmacy mails without a charge and it runs $53 for 90 tablets up to 6 mg so you could break tablets in half for a 3 mg dose then it’s even cheaper
I’m not worried about having to check on insurance since I’m retired and they should be able to see a BIG difference in the amount prescribed for MS is usually 3mg compared to 50mg for addictions. I think my biggest pain comes from the spasticity. I’m one of those MSers (new word)? that the cold is worse than the heat. Baclofen is hard to keep consistent in my system and not ready for a pump I don’t 🤔. Anyway I’ve got a call in for an appointment with neuro but it may be a little while. I want it now!!! Lol tired of this pain and not getting better.
• in reply toBecky63
Did you try tizanidine for spacticity. I take 4mg at am, again at noon, again in evening. And 6mg at bedtime. Helps alot keep away the contractures but still spacticity on and off all day long every few minutes drives me crazy but does really help.
• in reply toBecky63
Hi Becky,
Also under Dr. Bihari's protocol, you start at 1.5mg, go to 3mg, then to 4.5mg, which is what I'm on (though my function med doc recently told me she could increase me to 5mg). I don't know where you live but I use a pharmacy in Florida. The pharmacist there is very active in the LDN community and research. It's important to get the immediate release naltrexone, not the extended release. But you've probably read that. If you use one of the pharmacies on the list, they know how to mix it.
Becky63• in reply to
Yes, I called the Colorado pharmacist and they were great
Manechka• in reply to
when I was doing my research Dr. Bihari's articles & videos helped so much to finally come to using LDN
Conventional meds just made me sicker, LDN is great!
Becky63
my neuro wrote a prescription for me to try it b/c a compounding pharmacy was working with highly recommended it. My neuro said she had some on it by their request and they thought it helped but as CalfeeChick said, there's not much research.
I didn't fill the Rx. Likely fairly safe but it's still a drug you're putting in your body. So, personal choice...
I am thinking unless my neuro can offer something better, I will try it. At 69 yrs old I want to get some of my old life back. I’ve been turned down for some trials, even at UCSF, because of age. They don’t take into consideration the athletic life I had just 16 months ago. I’m now taking 2400 mg of gabapentin a day, 3+ modafinil a day and 2 10 mg Baclofen a day. Celebrex twice daily for arthritis. Symptom wise I feel like I’m going backwards for the last 5 to 6 weeks. Which is what I will tell the neuro!
CalfeeChick have you tried adding Zanaflex to your Baclofen regiment? When I told my first Neuro that I was still having pain from spacticity in my leg, he prescribed it to me. I can only take 1/2 a pill in the morning and a full one at night because it makes me sleepy during the day.
Hope you are able to get some relief soon,
Jessie
No I haven’t, much will be discussed on my next appointment. Next week. 😊💞
CalfeeChick
That's a lot of drugs! I can't blame you for considering the LDN. If you decide to try it, please let us know how it goes. Wishing you some relief🌈
Yes, LDN was on my list of questions to ask about at my last neuro appt. My doctor didn't know anything about it, apparently, since she didn't answer me when I asked. However, I've read about it a few times in my MS readings...soinds pretty promising to me. I don't have my books with me at present, otherwise I'd give more specifics. I'm actually not feeling very positive about my neurologist (although it may be a bit premature to form any opinions), since she doesn't seem to have intelligent answers to my questions about any "alternative medicine-type" therapies, ie. LDN, or various supplements.
My hubby and I have been taking LDN (4.5 mg) for almost 10 years. We had to go to an alternative medicine doctor to get started on it. Now our Neuro writes our scripts. His words "You have been on it for a while, it seems to be working for you. I am not going to mess with that". I want to touch on the opioid-blocking subject. 50 mg is what blocks the pain medicine. My hubby MS and Chronic Pancreatitis sufferer are also on a regular pain medicine regime and since it is on 4.5 mg, the pain meds work well for him.
That is what I was talking about. Lower doses have been slowing Mylen deterioration and blocking those nerve signals that give us our symptoms. So wonderful to hear your good news!!😃
Lowdosenaltrexone.org
releasing endorphins that makes our bodies feel better
YES! I think we all want to feel better😊
Becky63 I heard about this a couple of years ago and read that some people with MS were seeing good results so I tried it myself. I took it for a few months I believe, and I did not notice any benefit. Possibly I did not stay on it long enough and I wouldn't discourage anyone else from trying it. As we all know, what works for one may not work for another. I may even try it again at some point; since I have progressed I may see a different result.
Hi Becky,
Yes, I take LDN. I've been on it since 2012. Dr. Bernard Bihari is the doctor who first started experimenting with naltrexone in low doses and you can read lots about it on the internet. I'm guessing you've already educated yourself and that's why you're asking.
When I first started taking it I got a big boost in energy and overall function. In my case it has not stopped the MS from progressing, but 2 things it has done for me is: 1) it helped with depression and anxiety which seem to come with the MS territory, and 2) it helped tremendously with pain. I still have pain some days but it isn't the everyday thing it was before the LDN. I haven't had a major relapse since taking it, but I have transitioned to secondary progressive. I'm at the age where that is more likely to happen. So as far as LDN stopping progression, unfortunately that has not been my experience. But pain and depression were huge for me and I've kept taking it to help with those. I asked my neurologist if he would prescribe it and he told me to ask my primary care provider (PCP). Unfortunately my PCP had just retired and since I didn't have a PCP who knew me, I went to a local MS support group meeting where a neurologist from a local MS Center was speaking, and I asked him if anyone in his group prescribed LDN. He said he had a few patients that were on it, so I switched doctors. Good luck with whatever you decide.
I started taking 3mg daily of LDN ninety days ago based partly on this info posted below. It is costing me $53.00 for a 90 supply, I am diagnosed as PPMS, and can say that I am feeling better overall.
This is a great down to earth article about LDN.
suzycohen.com/articles/the-...
Thank you!
Read the article and I'm going to talk to neuro tomorrow at 6 month check-up
I have read some promising info about LDN but I doubt you'll find many doctors who will prescribe this in the US. I don't think there is enough info or research on it. There is a very interesting youtube video about this drug if you can find it. It is probably not a big money maker which is one reason it may be difficult to get. It is unfortunate because it might be something that could be very positive.
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