Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Hi everyone, I am considering LDN for my relapsing/remitting MS. I was diagnosed 3 years ago. Would I use LDN in place of my Rebif injections? Are there any risks? Are there any side effects? How will I know if it is helping me? I would like to hear any experiences regarding MS and LDN. Thanks for you time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Dear , I will send you a copy of the "welcome e-mail", "what not to take with LDN" and "beginning side effects with LDN" Welcome aboard, you are in a good place and LDN is an excellent drug to try for MS. Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 > > Hi everyone, > > I am considering LDN for my relapsing/remitting MS. I was diagnosed 3 > years ago. > > Would I use LDN in place of my Rebif injections? Are there any risks? Yes and no. > Are there any side effects? How will I know if it is helping me? You may have some short term minor sleep disturbance. The purpose of LDN is to slow/halt disease progression. > > I would like to hear any experiences regarding MS and LDN. My MS/LDN story - http://tinyurl.com/5tcp6r > > Thanks for you time! > > > Art -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Hi You can not take LDN and Rebif together, its either/or. I have RPMS and have been on Copaxone, Avonex and lastly, Rebif. None of them worked (for me). The side effects from Avonex and Rebif made me sicker than the MS did until I just told my Doc, enough...I'm quitting, I'm going for quality of life no matter how short. Then I found LDN. If I knew then what I know now, I would have never taken any of the CRAB drugs, I would have went straight to LDN. I was legally blind, neck and shoulder paralized and could not be up for more than 10 minutes at a time. Within one day of LDN, the paralysis was gone, within a month, my vision went from 20/1000 to 20/30 and I have energy again. I still get an occasional MS day, but nothing like before. LDN gave me my life back. I am now nearly as active as I was before MS. I am very sensitive to medication and also worried about LDN side effects. I'm happy to report that I have had none. I did have a reaction to the avicell filler used in LDN, but as soon as I switched fillers, that subsided. I started LDN 3 weeks after stopping Rebif. I gave myself a few weeks to recouperate from the Rebif side effects, then started LDN. The switch was immediately positive with no repercussions. To take LDN is a decision that only you can make. I did a great deal of homework before I made the decision but I'm happy that I did. Good luck > > Hi everyone, > > I am considering LDN for my relapsing/remitting MS. I was diagnosed 3 > years ago. > > Would I use LDN in place of my Rebif injections? Are there any risks? > Are there any side effects? How will I know if it is helping me? > > I would like to hear any experiences regarding MS and LDN. > > Thanks for you time! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Hi all, I have recently become a member of this group and this is my first post. After looking through many of the various topics being discussed about naltrexone, dosages, side effects etc., I would like to ask about taking Rebif and naltrexone at the same time. (again) I saw my neurologist on Monday of this week and asked about discontinuing the rebif and trying naltrexone. I was told that I could try the naltrexone if I wanted to, was warned about having very bad dreams, was told that another patient had done this and had serious set backs, and...was told to keep taking the rebif and start the naltrexone at 2.5mg. I feel very conflicted at this point. My dr. does stay very current on ms issues, but I am not sure about this latest suggestion. I am also supposed to go next Friday for an IV infusion of decadron. Solumedrol did not help the numbness in my hands (which is getting worse) and I had a bad reaction after the second IVIG treatment I tried. Also, I asked if my records showed if I had been tested for Lyme's (no) so I have had the blood work done and will wait for the results. Thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Hi a, I don't have MS myself but from having been on the list for over 5 years I can tell you that your neuro is a) incorrect and trying to scare you out of trying LDN. Rebif and LDN should NOT be used together as they work against each other and I have only ever heard of one other person having very bad dreams on LDN and suspect something else could have come into play in that case too. Some people find LDN has no impact whatsoever on sleep (insomnia or dreams), most of the rest have a few nights of slight insomnia or vivid dreams (I had dreams and want them back as they were great!!) and only a small percentage of people have longer lasting insomnia. My wife has been suffering insomnia for months now - and has never used LDN!! I suspect that if what your neuro said about another patient having serious set backs wasn't just another scare tactic then the blame can probably be laid squarely at his feet for saying that Rebif and LDN can be used together!! I can't really comment on the steroids having never had to use them but it would seem from all I've read that unless it's an emergency they are to be avoided when on LDN. Cheers, paulaleu04 wrote: > Hi all, > I have recently become a member of this group and this is my first > post. After looking through many of the various topics being discussed > about naltrexone, dosages, side effects etc., I would like to ask about > taking Rebif and naltrexone at the same time. (again) I saw my > neurologist on Monday of this week and asked about discontinuing the > rebif and trying naltrexone. I was told that I could try the naltrexone > if I wanted to, was warned about having very bad dreams, was told that > another patient had done this and had serious set backs, and...was told > to keep taking the rebif and start the naltrexone at 2.5mg. > I feel very conflicted at this point. My dr. does stay very current on > ms issues, but I am not sure about this latest suggestion. I am also > supposed to go next Friday for an IV infusion of decadron. Solumedrol > did not help the numbness in my hands (which is getting worse) and I > had a bad reaction after the second IVIG treatment I tried. Also, I > asked if my records showed if I had been tested for Lyme's (no) so I > have had the blood work done and will wait for the results. > Thanks, > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 I have PPMS and went from Rebif to LDN but you can not take the two together. It seems as though your Doc knows that the Rebif isn't working but afraid to commit totally to LDN. The script for 2.5 also seems out of whack as you should start at 1.5 for a few weeks, then begin 3.0. Most people with MS do not use a higher dose than 3.0. I also did IV Solumedrol (aka, draino) & Decadron monthly. I was fortunate that after I began LDN, I had no need for the IV steroids. One of the reasons I began LDN was so that I could finally get off the steroids. You can't do IV steroids and LDN so you must make a choice. For me...LDN was the right choice. > > Hi all, > I have recently become a member of this group and this is my first > post. After looking through many of the various topics being discussed > about naltrexone, dosages, side effects etc., I would like to ask about > taking Rebif and naltrexone at the same time. (again) I saw my > neurologist on Monday of this week and asked about discontinuing the > rebif and trying naltrexone. I was told that I could try the naltrexone > if I wanted to, was warned about having very bad dreams, was told that > another patient had done this and had serious set backs, and...was told > to keep taking the rebif and start the naltrexone at 2.5mg. > I feel very conflicted at this point. My dr. does stay very current on > ms issues, but I am not sure about this latest suggestion. I am also > supposed to go next Friday for an IV infusion of decadron. Solumedrol > did not help the numbness in my hands (which is getting worse) and I > had a bad reaction after the second IVIG treatment I tried. Also, I > asked if my records showed if I had been tested for Lyme's (no) so I > have had the blood work done and will wait for the results. > Thanks, > a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 Hi nancy I think you need to be careful about what you say here regarding the dosage. I`m not at all sure that " most people with MS only take 3mg " . I have no numbers but I think that most people that take LDN are on or at least try to take the optimal dose of 4.5mg. My husband has MS and has taken 4.5mg for nearly four years - he only took a lower dose for less than one month. I just wouldnt want any new members to think they should stop at 3mg without seeing how 4.5 works for them. If you dont suffer from stiffness or spacticity then there is no reason at all not to take 4.5 Bev > > I have PPMS and went from Rebif to LDN but you can not take the two > together. It seems as though your Doc knows that the Rebif isn't > working but afraid to commit totally to LDN. The script for 2.5 also > seems out of whack as you should start at 1.5 for a few weeks, then > begin 3.0. Most people with MS do not use a higher dose than 3.0. > > I also did IV Solumedrol (aka, draino) & Decadron monthly. I was > fortunate that after I began LDN, I had no need for the IV steroids. > One of the reasons I began LDN was so that I could finally get off > the steroids. You can't do IV steroids and LDN so you must make a > choice. For me...LDN was the right choice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 " Most people with MS do not use a higher dose than 3.0. " This is 100% untrue. The Low Dose Naltrexone Height/Weight/Gender/Dosage Poll In Spring 2006, the LDN board had an ongoing discussion about dosage. Does body size and gender affected the dosage of LDN? Should men take more than women, or less? Should large people take more than small people? In the notorious absence of actual clinical data for LDN, I opened a poll. I asked the members of the board to submit their height, weight, gender, and the dosage they were most comfortable with. I asked people who had not yet settled on a dosage to refrain from participating in the poll. Forty-seven people responded to the poll. Keeping in mind that I am not a statistician, here are the results: 1 person (2% of all respondents) takes 2.5mg 1 person (2% of all respondents) takes 4.0mg 3 people (13% of all respondents) take 6.0mg 17 people (36% of all respondents) take 3.0mg 25 people (53% of all respondents) take 4.5mg Gender Differences -- Total Men Responding: 18 8 men (39% of the men) take 3.0mg 10 men (61% of the men) take 4.5mg -- Conclusion – more men take 4.5 than take 3.0. Total Women Responding – 29 1 woman (3% of the women) takes 2.5mg 8 women (30% of the women) take 3.0mg 1 woman (3% of the women) takes 4.0mg 15 women (56% of the women) take 4.5mg 3 women (7% of the women) take 6.0mg -- Conclusion: more women take 4.5 than 3.0. -- We can also conclude that women are more likely to take " odd " dosages of LDN (like 2.5 or 4.0) than men are. Art --- > > I have PPMS and went from Rebif to LDN but you can not take the two > together. It seems as though your Doc knows that the Rebif isn't > working but afraid to commit totally to LDN. The script for 2.5 also > seems out of whack as you should start at 1.5 for a few weeks, then > begin 3.0. Most people with MS do not use a higher dose than 3.0. > > I also did IV Solumedrol (aka, draino) & Decadron monthly. I was > fortunate that after I began LDN, I had no need for the IV steroids. > One of the reasons I began LDN was so that I could finally get off > the steroids. You can't do IV steroids and LDN so you must make a > choice. For me...LDN was the right choice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 As more and more play the game of internet telephone, the messages get screwed up. Worth repeating [low dose naltrexone] Re: new to group - have MS Hi nancyI think you need to be careful about what you say here regarding the dosage. I`m not at all sure that "most people with MS only take 3mg".I have no numbers but I think that most people that take LDN are on or at least try to take the optimal dose of 4.5mg.My husband has MS and has taken 4.5mg for nearly four years - he only took a lower dose for less than one month.I just wouldnt want any new members to think they should stop at 3mg without seeing how 4.5 works for them. If you dont suffer from stiffness or spacticity then there is no reason at all not to take 4.5Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 I have Secondary Progressive MS and Transverse Myelitis and have taken 4.5mg of LDN for 3 years. I took 3mg of LDN for the first 5 months then went up to 4.5mg with no problems. May there be a miracle in YOUR life today and may you have the EYES to see it.From My Heart to Yours Love, Hugs & Blessings, CrystalLDN_Users Group OwnerDiagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years on LDN with Skip's Pharmacy.....No Relapses.....Crystal's MS,TM & LDN Websitehttp://www.freewebs.com/crystalangel6267/index.htm LDN Website http://ww.ldninfo.org/Crystal's LDN Support GroupLDN_Users/ LDN MySpace http://www.myspace.com/low dose naltrexone Cris - Case Health - Health Success Storieshttp://casehealth.com/case/about.html Crystal's LDN Gift Shophttp://www.cafepress.com/crystalldngifts Skip's Compounding Pharmacyhttp://www.skipspharmacy.com/ From: cat707k <bevhk@...>low dose naltrexone Sent: Thursday, January 15, 2009 12:36:22 PMSubject: [low dose naltrexone] Re: new to group - have MS Hi nancyI think you need to be careful about what you say here regarding the dosage. I`m not at all sure that "most people with MS only take 3mg".I have no numbers but I think that most people that take LDN are on or at least try to take the optimal dose of 4.5mg.My husband has MS and has taken 4.5mg for nearly four years - he only took a lower dose for less than one month.I just wouldnt want any new members to think they should stop at 3mg without seeing how 4.5 works for them. If you dont suffer from stiffness or spacticity then there is no reason at all not to take 4.5Bev>> I have PPMS and went from Rebif to LDN but you can not take the two > together. It seems as though your Doc knows that the Rebif isn't > working but afraid to commit totally to LDN. The script for 2.5 also > seems out of whack as you should start at 1.5 for a few weeks, then > begin 3.0. Most people with MS do not use a higher dose than 3.0.> > I also did IV Solumedrol (aka, draino) & Decadron monthly. I was > fortunate that after I began LDN, I had no need for the IV steroids. > One of the reasons I began LDN was so that I could finally get off > the steroids. You can't do IV steroids and LDN so you must make a > choice. For me...LDN was the right choice.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Yep, I agree Bev and unfortunately it's not the first time has given that misleading statement. :-( It is true that people with MS who suffer prolonged stiffness on higher doses may need to drop back to 3.0mg, but the optimum dose people should try to get to if possible is 4.5mg to prevent disease progression. cat707k wrote: > Hi nancy > I think you need to be careful about what you say here regarding the > dosage. I`m not at all sure that " most people with MS only take 3mg " . > I have no numbers but I think that most people that take LDN are on > or at least try to take the optimal dose of 4.5mg. > My husband has MS and has taken 4.5mg for nearly four years - he only > took a lower dose for less than one month. > I just wouldnt want any new members to think they should stop at 3mg > without seeing how 4.5 works for them. If you dont suffer from > stiffness or spacticity then there is no reason at all not to take 4.5 > Bev > > > > >> I have PPMS and went from Rebif to LDN but you can not take the two >> together. It seems as though your Doc knows that the Rebif isn't >> working but afraid to commit totally to LDN. The script for 2.5 >> > also > >> seems out of whack as you should start at 1.5 for a few weeks, then >> begin 3.0. Most people with MS do not use a higher dose than 3.0. >> >> I also did IV Solumedrol (aka, draino) & Decadron monthly. I was >> fortunate that after I began LDN, I had no need for the IV >> > steroids. > >> One of the reasons I began LDN was so that I could finally get off >> the steroids. You can't do IV steroids and LDN so you must make a >> choice. For me...LDN was the right choice. >> >> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.