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    #91
    I have been at that inbetween stage for a while, so hoping along with the walking and leg strength that things may be viewed a bit differently come my next appt with Nuero.

    Here's hoping!
    Gubbins

    Comment


      #92
      what dose LDN do you take?

      Gubbins,

      So happy for your success with LDN.

      What dose do you take?

      Are you RRMS or SPMS?

      Thanks!
      DX RRMS 1990-NO DMD'S FOR A FEW YEARS. EVENTUALLY STARTED AVONEX FOR 15 YEARS. DX SPMS 2013-STOPPED AVONEX. STARTED LDN 3MG NOVEMBER 2013.

      Comment


        #93
        Currently 4.5mg, seems good.

        RR, but last visit neuro felt that things are changing. I feel though with the LDN all has settled down, so we will see what his thoughts are at next appointment.

        Take care
        Gubbins

        Comment


          #94
          That's so exciting!

          So glad to read that it's helping you, gubbins! It must be wonderful to actually see improvement instead of losing ground. And you too, Lianne! I hope you both continue to see benefits.

          Well, I have finally managed to obtain the elusive LDN, but can't start taking it right now because I've been in so much pain after nerve damage from surgery, and need to take pain meds. I'm trying to get by with less and hopefully get to none, but the pain keeps yanking me back, like it did today. But, at least I've cleared one hurdle, so I'm going to keep trying for the next.
          PPMS
          Dx 07/13

          Comment


            #95
            A couple years ago I wrote this one-page letter, "To My Doctor" for the LDNaware.org website. LDNaware.org was basically a website that provided brief descriptions and links to all the scattered LDN information on the Internet. The objective of LDNaware.org was to consolidate everything in one place for people interested in LDN. LDNaware.org has since been absorbed by the LDN Research Trust website and no longer exists. I'm not so sure this was a good idea but Linda Elsegood who runs the LDN Research Trust from England, manages and funds the websites, organizes the conferences, and in general has devoted her life to LDN awareness, thinks this is the way to go, so be it.

            I had lost the letter on my hard drive but recently discovered it and thought it worth posting here on "Useful LDN Information".

            The "To My Doctor" letter was written to help people obtain a LDN prescripton from a doctor unfamiliar with the drug, it's application, safety, how to prescribe it, and where to get it made for the patient, all on one page. Doctors tend to be busy and when a patient presents them with a disorganized pile of information they found on the Internet many doctors don't have the time to learn about LDN and dismiss the request. This is especially true of some neurologists who will only prescribe FDA-approved MS drugs and think prescribing LDN could put them at risk.

            So here is the content of the letter and maybe it will help someone reading this MS World thread who wants to give LDN a try.

            To My Doctor,

            I would like you to write me a prescription for Low Dose Naltrexone (LDN).

            What is LDN?

            LDN is a compounded version of the FDA-approved drug Naltrexone. Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping
            heroin or opium addicts. By blocking opioid receptors, Naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: betaendorphin
            and metenkephalin. Used off-label at the lower dose of 4.5mg, many doctors now use LDN to treat autoimmune disease, cancer and HIV/AIDS.

            How does LDN work?

            The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of
            vital elements of the immune system by causing an increase in endorphin and enkephalin production. People who take LDN in this fashion have been found to have
            much higher levels of beta-endorphins circulating in their blood in the following days. In general, in people with diseases that are partially or largely triggered by a
            deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN.

            Is LDN safe?

            Yes. LDN is taken at less than one-tenth the dose (50mg) approved by the FDA for addicted pregnant mothers in an effort to save the baby. Over 100,000 people take
            LDN today under a doctor’s supervision. LDN has been shown to be a very effective therapy for autoimmune diseases (multiple sclerosis, rheumatoid arthritis, Crohn’s
            disease, lupus, and fibromyalgia), many cancers and HIV/AIDS. More detailed information on LDN can be found at www.lowdosenaltrexone.org

            How is LDN prescribed?

            LDN should be prescribed as following to minimize common side effects of sleep disturbance (vivid dreams) and leg stiffness. These side effects dissipate quickly
            with many users experiencing better sleep over the long term.

            1.5mg for two weeks (at bedtime)
            3.0mg for two weeks (at bedtime)
            4.5mg ongoing (at bedtime)

            Depending on body type, some individuals may encounter difficulties at the 4.5mg dosage and should remain at 3.0mg longer. Other side-effects may include mild
            appetite suppression and lack of taste for alcoholic beverages. Most users report “feeling good” the day after taking LDN due to the increase in endorphin production.
            It is recommended that LDN be stopped for a night every three weeks or so as to prevent Naltrexone build-up in the body and thus limiting its effectiveness. LDN
            should be compounded by a reliable pharmacy from pure Naltrexone powder and Avicel, lactose, or sucrose fast-release fillers. LDN should not be taken in
            combination with any narcotic or immune suppressant medication.

            Comment


              #96
              Originally posted by J-Bo View Post
              So glad to read that it's helping you, gubbins! It must be wonderful to actually see improvement instead of losing ground. And you too, Lianne! I hope you both continue to see benefits.

              Well, I have finally managed to obtain the elusive LDN, but can't start taking it right now because I've been in so much pain after nerve damage from surgery, and need to take pain meds. I'm trying to get by with less and hopefully get to none, but the pain keeps yanking me back, like it did today. But, at least I've cleared one hurdle, so I'm going to keep trying for the next.
              Hope you can get to a better point where pain meds are not needed and then give the LDN a try.

              So glad I took that leap and that the effects have been so positive ~ long may it continue!
              Gubbins

              Comment


                #97
                That's a great letter, knuckle. Thanks for posting it. I tried to do a similar thing with the doctor that most recently turned me down because he said he would consider it if I could give him some good info. He never even acknowledged that he received it, and that was over a month ago. Jerk.

                Well, I've been on 1.5 mg for a week now. So far not much to report, except that I've noticed an improvement in bladder control. I can't imagine that could happen at such a low dose, so it must just be a coincidence. I'll keep everyone posted as I increase the dose.
                PPMS
                Dx 07/13

                Comment


                  #98
                  Originally posted by knuckle View Post
                  You would think over the past decade that the NMSS could have managed to fund LDN research, but they won't, because if LDN was found to be just as effective, or more effective, than the big pharma first-line MS drug therapies all hell would break lose.
                  .
                  Knuckle, keep banging that drum!!! If we make enough noise, someone will have to stand up and take notice. For my part, I want to say THANK YOU!!!! I read your post about LDN about 2 years ago. I have stayed persistent through 3 neurologists and 2 different GPs. I have FINALLY found one that listened. My newest and current GP has prescribed LDN for me, YAY!!! It should be here this week. I can't wait.

                  Comment


                    #99
                    LDN?

                    Originally posted by J-Bo View Post
                    That's a great letter, knuckle. Thanks for posting it. I tried to do a similar thing with the doctor that most recently turned me down because he said he would consider it if I could give him some good info. He never even acknowledged that he received it, and that was over a month ago. Jerk.

                    Well, I've been on 1.5 mg for a week now. So far not much to report, except that I've noticed an improvement in bladder control. I can't imagine that could happen at such a low dose, so it must just be a coincidence. I'll keep everyone posted as I increase the dose.
                    How is it going with the LDN for you?
                    Gubbins

                    Comment


                      How is it going with the LDN for you?
                      Not really seeing any dramatic results, but hey, it's so safe that I can't see a downside to taking it. Besides, with PPMS, it isn't like there are any other great treatments out there, so why not keep at this?

                      I just posted in the MN-155 thread that I'm probably going to apply for the Ibudilast trial. I asked my new MS doctor if taking LDN would disqualify me for it and he said that he didn't think so. Then I said that's probably because they don't believe it does anything, and the doc just kind of smiled.

                      I guess I'm pretty agnostic on LDN at this point, at least for myself, but there does seem to be something to it for some people, and maybe it's helping me not progress as fast--kind of too soon to know that I guess.
                      PPMS
                      Dx 07/13

                      Comment


                        naltrexone

                        Originally posted by J-Bo View Post
                        Not really seeing any dramatic results, but hey, it's so safe that I can't see a downside to taking it. Besides, with PPMS, it isn't like there are any other great treatments out there, so why not keep at this?

                        I just posted in the MN-155 thread that I'm probably going to apply for the Ibudilast trial. I asked my new MS doctor if taking LDN would disqualify me for it and he said that he didn't think so. Then I said that's probably because they don't believe it does anything, and the doc just kind of smiled.

                        I guess I'm pretty agnostic on LDN at this point, at least for myself, but there does seem to be something to it for some people, and maybe it's helping me not progress as fast--kind of too soon to know that I guess.

                        Hi. My name is Rand. I posted most of this under “new guy”.

                        I was officially diagnosed with PPMS in 2008. I would like to hear from anyone about their experiences with Low Dose Naltrexone. In August I was so weak and fatigued I was sure I would be in a wheelchair in a matter of weeks. While surfing the net, without hope, I found Naltrexone, researched it, and have been taking it since Aug 31.

                        After three weeks, and a beer, I walked a block, bought an ice cream and sat for 15 min, then walked four blocks home, with a one min rest after three blocks. And the next day I wasn’t sore or stiff from the exercise.

                        Since then, I have the occasional mild forehead fever, still get stiff muscles, but they’re stronger. I have been having trouble sleeping, but that may be because of my environment (two teenage sons). I can now work physically for a couple of hours a day, now and again, which I haven’t done for a couple of months.

                        The regime I’m following now includes;
                        Modafinel – Two in the morning (down from three, started six months ago)
                        Famphyra – Two a day, 12 hours apart, for walking and balance
                        MM and ibuprofen for pain
                        Naltrexone – 2 ml morning and night
                        I also use an electrical muscle stimulator (EMS), about the size of a transistor radio, most days, to exercise different muscles. I began physiotherapy three years ago, once every two weeks; last year, once a week and now twice a week.

                        Anecdotal evidence suggests progression could stop for some people, and if that happens and this is as good as it gets, I’d be fine with that. But if not, I’m better now than I was and I’ll enjoy what I can, when I can. Naltrexone doesn't help everyone, but with a 50/50 chance, and for most people, no serious side effects, I think everyone should try it.

                        In the meantime, please respond with your thoughts about LDN.

                        Comment


                          Thanks for info

                          Thanks for medication information. I also have PPMS - taking Provigil for help with fatigue, but may bring this option to my PCP or neurologist at next visit. Fatigue is getting worse. Thanks again.
                          Mary

                          Comment


                            Made the decision

                            A MS friend has been talking and talking to me about LDN. Life has been so difficult lately. If LDN can even slightly help me with energy and over all mood, well that would be huge.

                            I made the decision to move ahead with it. I asked Dr Neuro for a script.

                            Thank you, thank you!! for all the info and personal experiences. That really helped with decisions. I will come back later and post my experience with LDN.
                            Karen

                            Comment


                              I made the decision to move ahead with it. I asked Dr Neuro for a script.

                              Thank you, thank you!! for all the info and personal experiences. That really helped with decisions. I will come back later and post my experience with LDN.[/QUOTE]


                              We look forward to hearing about your experience with LDN, Karen.

                              A good article about LDN can be Googled, "The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain" or hopefully, this link will work:

                              http://link.springer.com/article/10....067-014-2517-2

                              Comment


                                Chart review of 215 MSers taking LDN between 2005 - 2012

                                Low Dose Naltrexone for Treatment of Multiple Sclerosis
                                A Retrospective Chart Review of Safety and Tolerability

                                Journal of Clinical Psychopharmacology • Volume 35, Number 5, October 2015 www.psychopharmacology.com 609

                                Quote "Multiple sclerosis (MS) is an autoimmune disease of the central nervous system that afflicts 400,000 people in the United States and more than 4 million individuals worldwide. The most common form of MS is relapsing remitting multiple sclerosis (RRMS), characterized by alternating relapses and remissions for a period of 10 to 15 years followed by steadily progressive deterioration transitioning into secondary progressive MS. Multiple sclerosis is characterized by neurodegeneration of the spinal cord and brain, resulting in a reduction in mobility, reduced quality of life, and increased medical expenditures... Nearly all of the therapies are costly and have side effects that reduce compliance. There remains an unmet medical need for safe, inexpensive therapies that delay MS progression and improve its clinical course.

                                A potential alternative or adjunctive therapy for MS is related to knowledge about the endogenous opioid system and its ability to modulate autoimmune diseases using animal models of MS. This novel biological pathway involves an endogenous opioid growth factor, chemically termed methionine enkephalin, and its nuclear-associated receptor, Opioid growth factor receptor. Modulation of this pathway by exogenous administration of opioid antagonists such as naltrexone (NTX) has been shown to mediate cell replication including T lymphocytes, astrocytes, and other glia that are associated with MS inflammation and degeneration...

                                Three clinical trials of LDN in MS have been conducted and report that LDN increases the quality of life of MS patients.
                                Cree et al concluded from a trial of 8 weeks that 4.5 mg LDN daily was a safe therapy that improved quality of life, whereas
                                Sharafaddinzadeh et al reported safety after 17 weeks of treatment and recommended that longer trials be conducted to evaluate efficacy.
                                Gironi et al studied primary progressive MS patients treated with LDN for 6 months and reported increased endogenous opioid levels in the patients and improved MS...

                                A major symptom of MS is fatigue, which is one of the many characteristics that patients seek to alleviate. Improvement in fatigue was cited in these clinical studies after LDN therapy, which suggests that there is a potential link between upregulated endogenous opioid systems and fatigue. Gironi et al reported elevated β-endorphin levels at 1, 3, and 6 months after the onset of treatment, with β-endorphin levels remaining elevated for an additional month after LDN was discontinued...

                                To determine the safety, tolerability, and effectiveness of LDN on fatigue, a retrospective analysis of MS patients prescribed LDN (3.5 mg orally, once daily) by physicians in the Department of Neurology at The Penn State Hershey Medical Center was undertaken... All patients were given the option of receiving LDN with the understanding that medication could be stopped if they experienced side effects. Some patients already receiving disease-modifying therapy (DMT) when started on LDN continued the standard DMT along with adjunctive LDN. Evidence of major drug interactions was monitored but no interactions were reported.

                                The medical records of 215 MS patients, aged 18 to 65 years, seen in the MS clinic for a 7-year period (January 01, 2005 to May 31, 2012) and prescribed 3.5 mg LDN, orally, once daily, served as the study group.

                                The LDN was provided by a licensed compounding pharmacy and cost the patients between US $30 to $50 monthly.

                                Information on LDN safety, tolerance, side effects, reasons for discontinuation, and hospitalizations while taking LDN were evaluated... The number of documented flares after LDN treatment was initiated was recorded, with a clinical flare defined as the appearance of new symptoms/signs or worsening of old symptoms/signs. Finally, in a retrospective manner, information regarding possible LDN effects on fatigue, quality of life, and the effect on MS was obtained from the patient's visit history and a review of symptoms.

                                Prescriptions for LDN were provided to 152 female (71%) and 63 male (29%) patients... Clinically, 87% of the patients had RRMS and 10% had secondary progressive MS, with a mean disease duration of 10 years... Seventy seven percent (n = 166) of patients taking LDN for any period of time did not report any side effects. Six percent of the patients had insomnia, whereas 5% of the patients had excessive dreams. There was no evidence of increased side effects related to other immunomodulators when combined with LDN. No abnormal laboratory results were noted... No patient was admitted to the hospital because of side effects of LDN.

                                Most of the MS patients began LDN therapy because of fatigue. Nearly 60% (n = 128) of patients receiving LDN for any period of time reported a reduction in fatigue with LDN therapy.

                                Fifty of the 215 patients commented that LDN produced no relief from fatigue and 4 patients stated that LDN increased their fatigue levels.

                                Regarding their quality of life and the perception of LDN's effects on MS, 130 patients (60%) stated that LDN stabilized or improved their disease and 75% of the patients reported improved or stabilized quality of life.

                                Nine patients reported that LDN reduced the quality of life, and 8% of the patients had the perception that their disease increased while on LDN but provided no details.

                                In conclusion, this chart review focused on 215 MS patients who were provided a prescription for oral LDN. The study reports that a significant number of patients found combination therapy of an immunomodulating agent and LDN to be tolerable and possibly beneficial.

                                Some patients preferred to take LDN as a monotherapy. The LDN did not cause any unexpected side effects, and those reported were previously noted in the literature. The LDN did not potentiate the side effects of the immunomodulating therapies that the patients were receiving. Any hospitalizations in this study were related to reasons other than MS, and there were no hospitalizations due to LDN...

                                … data from this retrospective study support future prospective double-blind investigations comparing a combination of LDN plus DMT and DMT alone." End Quote

                                ACKNOWLEDGMENT
                                The authors thank Marcus Magister, MD, Class of 2015, Penn State University College of Medicine, for the assistance in chart review, data acquisition, and data entry into REDCap.

                                AUTHOR DISCLOSURE

                                None of the authors have disclosures.

                                Anthony P. Turel, MD Department of Neurology The Penn State University College of Medicine Hershey, PA

                                Keun Hee Oh, BS Ian S. Zagon, PhD Department of Neural and Behavioral Sciences The Penn State University College of Medicine Hershey, PA

                                Patricia J. McLaughlin, MS, DEd Department of Neural and Behavioral Sciences The Penn State University College of Medicine Hershey, PA
                                Last edited by Seasha; 05-27-2018, 08:37 PM. Reason: email address at bottom removed

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