sue54
04-23-2008, 07:14 PM
I just heard about LDN for treatment of MS.,and want to learn anything I can about it. Apparently what I read is positive for any form of MS. Anyone out there that is taking LDN could you fill me in please.ie; side effects,results,any info.and where to do more research?TY.sue54
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MSNik
04-23-2008, 07:54 PM
Hi Sue, alittle more info....LDN or low dose Naltrexone is NOT approved for MS. Its not something that any Neuro Ive ever met will prescribe; however FEW family docs, will prescribe it IF YOU ARE NOT ON ANY MS DRUGS. You cannot take LDN with any of the interferons or Copaxone...On top of it, the drug itself has to be compounded and there are pharmacies across the country which will compound it for you- but be very careful about buying it overseas or even in Canada (thru a website) already compounded and delivered to your door...remember, if it sounds too good to be true...
Another thing to point out is that most prescription plans will not cover this for MS use, especially if you have an MS dx...
Less than 10% of people who actually have an MS diagagsis have ever tried LDN and those who have- very few have had success on it, but those who have had success- admit to the same thing that Kelly said...it helps keep relapses at bay. I know of a few people who have tried it, one who wishes she was still on it, and most who had absoutely no success on it at all.
Because this disease is so different for each of us, what works for one, will not necessarily work for another...but keep in mind, LDN is NOT approved for MS therapy in the USA. (and my comment about Canadian pharmacies wasnt a slam to our Canadian friends, but we all know that in the US, we get info on "ordering cheap" from Canada all the time...those are the ones to beware of...there are pharmacies in the US which mail order compounded drugs including LDN, and most doctors will recommend where to get it since it isnt available at your local pharmacy in most cases).
Hope this helps alittle..
Nikki
Another thing to point out is that most prescription plans will not cover this for MS use, especially if you have an MS dx...
Less than 10% of people who actually have an MS diagagsis have ever tried LDN and those who have- very few have had success on it, but those who have had success- admit to the same thing that Kelly said...it helps keep relapses at bay. I know of a few people who have tried it, one who wishes she was still on it, and most who had absoutely no success on it at all.
Because this disease is so different for each of us, what works for one, will not necessarily work for another...but keep in mind, LDN is NOT approved for MS therapy in the USA. (and my comment about Canadian pharmacies wasnt a slam to our Canadian friends, but we all know that in the US, we get info on "ordering cheap" from Canada all the time...those are the ones to beware of...there are pharmacies in the US which mail order compounded drugs including LDN, and most doctors will recommend where to get it since it isnt available at your local pharmacy in most cases).
Hope this helps alittle..
Nikki
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04-23-2008, 08:13 PM
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Nenu
04-23-2008, 09:21 PM
Now you folks have me curious about LDN. I still have yet to begin Copaxone due to the financial assistance approval.
Is LDN an injectable or pill? I've got medical coverage through my employer, is this subject to such medical coverage, since a doctor can prescribe it? Not saying I'd try it myself, just curious about it.
Is LDN an injectable or pill? I've got medical coverage through my employer, is this subject to such medical coverage, since a doctor can prescribe it? Not saying I'd try it myself, just curious about it.
Snoopy61
04-23-2008, 10:55 PM
Hi, Sue.
I haven't used LDN although I have considered it. If you research LDN there is quite a bit of information on it and MS.
LDN is no different than anything else when it comes to MS - it helps some but not others.
Copaxone is the only DMD that is recognied as being okay to take with LDN.
Here is a little information about LDN ---
http://www.ncbi.nlm.nih.gov/pubmed/15694688
I believe there are clinical trials on the use of LDN and MS. Currently LDN is used for symptom management but I am aware of some who use LDN and feel it is controlling their disease.
Caution: there is no magical cure or easy fix for this disease.
I haven't used LDN although I have considered it. If you research LDN there is quite a bit of information on it and MS.
LDN is no different than anything else when it comes to MS - it helps some but not others.
Copaxone is the only DMD that is recognied as being okay to take with LDN.
Here is a little information about LDN ---
http://www.ncbi.nlm.nih.gov/pubmed/15694688
I believe there are clinical trials on the use of LDN and MS. Currently LDN is used for symptom management but I am aware of some who use LDN and feel it is controlling their disease.
Caution: there is no magical cure or easy fix for this disease.
Bearygood
04-24-2008, 01:31 AM
Sue, ditto to what Snoopy said. I've seen many people who feel they've had success with LDN. You have to find a compounding pharmacy -- I don't think I'm allowed to post the name of it but there is a popular one in Florida. From what I understand it's not expensive.
To clarify "not approved", that means it has gone through the FDA approval process for MS. It is approved by the FDA for another use.
I'm not 100% sure but I think that there are other posts about LDN on this board if you want to do a search.
To clarify "not approved", that means it has gone through the FDA approval process for MS. It is approved by the FDA for another use.
I'm not 100% sure but I think that there are other posts about LDN on this board if you want to do a search.
k9gsd
04-24-2008, 10:17 AM
I will give my experience with LDN so it will be on record for anyone else that is searching this board.
Again, keep in mind that I do not have an MS diagnosis at this point. My doctor started me on LDN mid-January. I started on 1.5mg LDN. I initially had increased spasticity, numbness/tingling and headaches. When these subsided, I upped my dose to 3mg. Again, my symptoms initially increased and again subsided after a couple of weeks. I upped my dose to 4.5mg, which is where I have been for the last couple of months. I have increased stiffness at this point, but I have heard that this can subside after 4-6 months of use.
I am still symptomatic, which is alright by me, since I know that LDN is not supposed to be a cure. It is supposed to stop the progression of autoimmune disease. There are approximately 10% of people for whom LDN does not seem to work at all. The positive results that I have had are that I have not been sick once since starting the LDN and I used to catch every bug that went around. Also, my moods have been much better. I am not cured, but I can at least get through my days with a better attitude. I just don't feel as sick as I did.
I think the main problem most people have with taking LDN is the initial increase in symptoms. From reading about LDN and talking with my doctor, I knew to expect this, so it wasn't a big surprise to me. Also, I knew it was not a cure, so I wasn't expecting my current symptoms to go away.
People want the quick easy fix. Pop a pill and you'll be all better. There isn't a quick, easy fix. I am particular about my diet, I take additional supplements, I don't smoke or drink alcohol or caffeine, I try to stay active on my good days, I go to bed early and get enough sleep. These are changes to some lifestyles that people aren't willing to make.
Everyone needs to make their own choices as to what treatment is most beneficial for their situation. They need to be informed about the pros and cons of each option so they can make the right decision.
...Kelley
BTW... I pay out of pocket and my LDN costs $25 per month.
Again, keep in mind that I do not have an MS diagnosis at this point. My doctor started me on LDN mid-January. I started on 1.5mg LDN. I initially had increased spasticity, numbness/tingling and headaches. When these subsided, I upped my dose to 3mg. Again, my symptoms initially increased and again subsided after a couple of weeks. I upped my dose to 4.5mg, which is where I have been for the last couple of months. I have increased stiffness at this point, but I have heard that this can subside after 4-6 months of use.
I am still symptomatic, which is alright by me, since I know that LDN is not supposed to be a cure. It is supposed to stop the progression of autoimmune disease. There are approximately 10% of people for whom LDN does not seem to work at all. The positive results that I have had are that I have not been sick once since starting the LDN and I used to catch every bug that went around. Also, my moods have been much better. I am not cured, but I can at least get through my days with a better attitude. I just don't feel as sick as I did.
I think the main problem most people have with taking LDN is the initial increase in symptoms. From reading about LDN and talking with my doctor, I knew to expect this, so it wasn't a big surprise to me. Also, I knew it was not a cure, so I wasn't expecting my current symptoms to go away.
People want the quick easy fix. Pop a pill and you'll be all better. There isn't a quick, easy fix. I am particular about my diet, I take additional supplements, I don't smoke or drink alcohol or caffeine, I try to stay active on my good days, I go to bed early and get enough sleep. These are changes to some lifestyles that people aren't willing to make.
Everyone needs to make their own choices as to what treatment is most beneficial for their situation. They need to be informed about the pros and cons of each option so they can make the right decision.
...Kelley
BTW... I pay out of pocket and my LDN costs $25 per month.
pamella08
04-24-2008, 10:19 AM
Hey Nik, Thank you.You are very quick to respond.I am now Pamella08(instead of Sue54), I know it is probably me that messed up.So it is still me.But I messed up and had to changed name.I'll never get computer down. :+(May I put you on my buddy list? Remember I,m pamella08.Thanks again my friend. p.s.,I am not a Newbie.3 years ,is that still Newbie?......LOL
pamella08
04-24-2008, 10:33 AM
k9gsd,
Thank you for all the feedback, very helpful.How do you feel today? And do you know the form or stage of MS you have? Pamella08
Thank you for all the feedback, very helpful.How do you feel today? And do you know the form or stage of MS you have? Pamella08
pamella08
04-24-2008, 10:36 AM
Hi bearygood, you may remember me as sue54,I am now,pamella08 ???? anyway. Florida, that's great! That's where I live.Anymore info you want to offer let me know.TY :+)
k9gsd
04-24-2008, 10:40 AM
I do not have an MS diagnosis at this time. I just had my first brain MRI yesterday and haven't gotten the results yet.
Right now, I am fully functionable with some annoying symptoms. Dizziness, trouble with memory, concentration and pulling my thoughts together, dropping things. I do fairly well if I don't overdo things. If I work myself too hard, I get weak, blurry vision, incredible fatigue, achy and sore all over.
...Kelley
Right now, I am fully functionable with some annoying symptoms. Dizziness, trouble with memory, concentration and pulling my thoughts together, dropping things. I do fairly well if I don't overdo things. If I work myself too hard, I get weak, blurry vision, incredible fatigue, achy and sore all over.
...Kelley
mary63
04-25-2008, 07:26 AM
Hi there- do you what makes me mad? your doctors over there actually seem to want to give you some medication- even without a diagnosis- to help-
my neurologist and GP don't want to give me a single thing- (not even a low dose steroid) despite tingling, weakness since november...i feel like they don't care, don't believe me or aren't clued up-
I asked the neurologist what meds he could prescribe if i am diagnosed following an MRI in july- he said there was no meds unless i had had 2 relapses in a year. What constitutes a relapse i wonder?? doesn't ongoing tingling suggest something..??
Sorry to rave and rant- i just feel angry that there's nothing being done...arrgggh
my neurologist and GP don't want to give me a single thing- (not even a low dose steroid) despite tingling, weakness since november...i feel like they don't care, don't believe me or aren't clued up-
I asked the neurologist what meds he could prescribe if i am diagnosed following an MRI in july- he said there was no meds unless i had had 2 relapses in a year. What constitutes a relapse i wonder?? doesn't ongoing tingling suggest something..??
Sorry to rave and rant- i just feel angry that there's nothing being done...arrgggh
Nenu
04-25-2008, 08:10 AM
I often wonder what is a 'relapse' myself. I have such a threshold for pain and symptoms now, I wonder if my idea of a 'relapse' is different than another's.
I can tell you one thing, you don't want to be on steroids unless it's the absolute last choice. Since you aren't getting support from doctors hun, have you tried looking into the natural route to help with the tingling and weakness? I'd suggest that in the meantime, at least so you can get some relief.
I can tell you one thing, you don't want to be on steroids unless it's the absolute last choice. Since you aren't getting support from doctors hun, have you tried looking into the natural route to help with the tingling and weakness? I'd suggest that in the meantime, at least so you can get some relief.
MSNik
04-25-2008, 08:10 PM
I want to add to this, a relapse is when symtoms either new, or reoccuring start again...usually there are weeks, when the patient is symtom free and then they return (or new ones start) before its considered a relapse. Also a relapse usually lasts more than 48 hours, without a break...
When you have ongoing symtoms, which never truly go away (and I can sympathize- I have had tingling, numb hand/fingers for over 18 months now) its not a relapse and usually when things like this happen, its permenant nerve damage...Ive tried steroids, in the beginning, and again a few months later when I was at my wits end with pain; Ive tried PT, Accupuncture, a nutritionist, and a Homeopathic doc- nothing has ever helped the pain. Nerve drugs (lyrica, neurontin/gabepentin) dont touch it- and it hurts 24-7...however, I have identified what makes it worse. Severe humidity and cold hurt worse...hot baths, too warm water and even massage make it hurt worse..avoiding those things is hard, however trying to avoid them is necessary.
I feel for you...its horrible, but honestly, it does have its peaks and lows with the pain threshold..you learn to live with it..and celebrate the days when nothing else hurts!
Nikki
When you have ongoing symtoms, which never truly go away (and I can sympathize- I have had tingling, numb hand/fingers for over 18 months now) its not a relapse and usually when things like this happen, its permenant nerve damage...Ive tried steroids, in the beginning, and again a few months later when I was at my wits end with pain; Ive tried PT, Accupuncture, a nutritionist, and a Homeopathic doc- nothing has ever helped the pain. Nerve drugs (lyrica, neurontin/gabepentin) dont touch it- and it hurts 24-7...however, I have identified what makes it worse. Severe humidity and cold hurt worse...hot baths, too warm water and even massage make it hurt worse..avoiding those things is hard, however trying to avoid them is necessary.
I feel for you...its horrible, but honestly, it does have its peaks and lows with the pain threshold..you learn to live with it..and celebrate the days when nothing else hurts!
Nikki
Nenu
04-25-2008, 10:34 PM
I'm thinking about the nerve drugs when I go to my doctor. I still have the nagging neck pain on the right, and nerve pain in the face. Today I woke up feeling great. As the day went on, it progressively got worse. It's times like this that I wish I had some type of relief. Acupuncture's helped the nerve pain to a degree, but it doesn't fully go away.
mary63
04-26-2008, 02:28 AM
Hi Nikki- just wanted to ask you...did you find anything that helped the tingling? i don't have pain other than headaches and awful back stiffness.... i can live with that!
by the way i read one of your posts to another thread- it was so amazing and so helpful- i wish i lived near you folks- not on the other side of the world!! but this board is such a lifeline- thankyou so much.....
by the way i read one of your posts to another thread- it was so amazing and so helpful- i wish i lived near you folks- not on the other side of the world!! but this board is such a lifeline- thankyou so much.....
MSNik
04-26-2008, 06:28 PM
Hi Mary. Thanks for reading my posts! Unfortunatly, no, I havent found ANYTHING for the tingling which really helps and at times, its really painful. I know that heat and humidity make it worse, as does really cold days...the only thing which helps me even alittle is taking Tumeric, found in health food stores, its a capsule. I take 2 of them, or 900 mgs a day. It helps alittle....other than that, its been tough and 18 months of dealing with it. I hate to say it, but you get used to it, and start dealing with it as if it isnt there...tough to imagine, and certain days, you cant ignore it- but you try, when its not overwhelming you, you almost forget!
It doesnt matter where you live, Mary- we are here for you always and whenever you need us! Just make sure you are happy with the doctor you see- that seems to be key in managing this disease.
Hugs to you..
Nikki
It doesnt matter where you live, Mary- we are here for you always and whenever you need us! Just make sure you are happy with the doctor you see- that seems to be key in managing this disease.
Hugs to you..
Nikki
mary63
04-29-2008, 07:38 AM
thanks so much....!!!