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I have been on Aubagio for 6 months - had MRI with new lesions!! Doctor wants to put me on more powerful medication - so going to try Gilenya - any
Dear @A MyMSTeam Member – Well, first of all, what dose are you on at present? I started at 3.0 mg/day at bedtime in January, but I’ve been on 4.5 mg/day at bedtime since the end of February. I think you should give it a couple of months at least. The changes and improvements can “slip up on you” unnoticed, until one day you realize all the things that have changed and improved! I think it took me a couple of months to really get the effect and we were stepping my dose up from 3.0 mg/day to 4.5 mg/day. I did see more benefit as the dose increased! Some of the most noteworthy benefits are:
1.0 Greatly improved walking and balance!
2.0 My dropped foot has resolved and we have decided that I don’t need to get the knee-ankle-foot
-orthotic. My Dr. has been monitoring and measuring the REAL changes in my ankle and foot.
3.0 My bladder function has returned to NORMAL after YEARS of problems! (I would continue LDN for that reason if for no other)
4.0 My sleep and energy levels are hugely improved! And because of the improvement in my bladder function I no longer have to get up often in the night, which improves my rest.
5.0 At the time I started LDN, I was having major painful abdominal spasms (MS hug?). These completely cleared up after I had been on LDN for just 3-4 weeks!
6.0 My “useless” right hand has recovered, and I can now write longhand again, and button my shirts and operate my can opener! My doctor has been measuring the changes in my hand.
So, @A MyMSTeam Member –Give the LDN some time to work and increase your dose to 4.5mg as your Dr. permits. Good luck and best wishes! LDN has been a God-send and has done WONDERS for me!
Dear @A MyMSTeam Member! Welcome aboard! You’re doing just fine! I think you will find this site helpful – I surely have! Thanks for adding me to your team! I’ve added you to mine as well! I look forward to sharing, and I’m happy to share anything that I’ve learned – I have no secrets! To answer your question – I did have lots of problems with a dropped foot, that was so bad that I had to stop driving, and Dr. Gwinn prescribed a KAFO (Knee-Ankle-Foot-Orthotic) that I never obtained. However, based on his tests of the strength of my right foot, he is of the opinion (as am I) that I no longer have a “dropped foot”! It is MUCH better!! Last summer and early fall, it got to be so bad that it became almost impossible, at times, for me to even walk with a cane! That’s all gone now!! And I’m preparing to go take a road test to renew my driver’s license! I had many other benefits from LDN. My walking is MUCH better now. And I have recovered most all of the use of my right hand – I can now button my shirts and write long hand again. My bladder has returned to NORMAL – after years of problems! Thank God. ! My balance is also much better, as is my sleep, and my energy levels are hugely improved, and I’m sleeping very well! Basically, my MS symptoms are GONE, and my MRIs are unchanged over a year ago –indicating that my MS is, at least, not progressing! I should add that I also made a good bit of progress on Dr. George Jelinek’s “Overcoming Multiple Sclerosis” recovery, program, but the LDN was a HUGE help! I would highly recommend both to anyone with MS! I am not, and have not, taken any of the mainstream , obscenely expensive mainstream MS drugs, that, as far as I can tell, are only marginally effective, and have lots of really bad side-effects! I gladly py $38/month out of my own pocket for LDN! I’m so thankful that my research led me to LDN, and that my Dr. Gwinn was familiar with the drug and was happy to prescribe it. I’m almost embarrassed that I seem to be doing so much better than so man y on this site who are struggling so, while using all those “high-powered” MS drugs and paying obscene prices for them, and suffering all their side-effects! Thanks for writing, Dawn! Please stay in touch! Have a good evening!
Dear @A MyMSTeam Member!! Thank God that you have an enlightened, open-minded neurologist! In my case LDN is not the total answer! Please get a copy of Dr. George Jelinek's wonderful book, "Overcoming Multiple Sclerosis"!! You can get in on Amazon. It's not expensive! EVERY person with MS should have a copy, as should their neurologists! I have followed his recovery program and diet and Vitamin D regimen religiously since early September 2013! After a couple of months on his program I began to see significant and noteworthy improvements in my symptoms MUCH earlier than I had dared to hope! Then when my Dr. and I added LDN in January, things got hugely better! again! Basically my MS seems to be in Remission - or at least is NOT PROGRESSING! See also Dr. Jelinek's OMS website: www.overcomingmultiplesclerosis.org. See also his comments on his website regarding LDN! In the meantime, STOP consuming any cow's milk or cow dairy products (cheese, yogurt, ice cream etc.) You should probably be taking 10,000 IU/day of Vitamin D3 and some sub-lingual B12. You can get Nature's Bounty 10,000 IU gelcaps from Walgreens. That's what I take daily. For several months I took 20,000 IU/day of D3 to get my 25-hydroxy Vitamin D blood level up to a target range of 80-100 ng/mL. I overshot a little and reached 121 ng/mL, so I backed the D3 dose down to 10,000 IU/day. We can pretty much take that amount indefinitely. Your PCP can monitor y our Vitamn D levels, but since you have MS. I expect yours is really low! This time last year mine was 38 n/mL - j ust borderline inside th;e "normal" range - b ut way too low to be helpful with MS! See Dr. Jelinek's book for his comments on Vitamin D, cow's milk etc. - it will all make senseto you! Dr. Jelinek is a physician in Australia, who is also an MS sufferer, and he has put his MS into REMISSION and has kept it there for 15 years with his program!! And it, and LDN, have worked for me! Good luck! P.S, Please tell me your name so I don't have to address you as "3labs"! Thanks! g'nite!
Dear @A MyMSTeam Member Well, LDN has been a God-send for me - and I will NEVER be without it! NO side-effects. Some people report that they dream more at first. I perhaps dreamed a little more - but nothing noteworthy. I sleep like a baby with LDN! My sleep is MUCH better and my energy level is HUGELY improved! Importantly, my bladder function has returned to NORMAL since starting LDN after YEARS of problems! So I don't have to get up nearly as much in the night! There are essentially NO side effects from LDN. I should point out that Naltrexone, in a much higher dose of 50-100 mg/day has been FDA approved for MANY YEARS as an opioid antagonist in the treatment of opioid addiction. LDN is a MUCH lower dose of 3.0-5.0 mg at bedtime - and therefore essentially NO side-effects! The problem for us MS sufferers is that LDN is off-patent and CHEAP!! Therefore, Big Pharma has no interest in conducting or sponsoring the randomized clinical trials to get LDN FDA approved in the low-dose formulation for treatment of MS, Crohn's disease and fibromyalgia. Sadly, LDN is one of the very few things that seems to be helpful for people with SPMS and PPMS! I gladly pay $38/month out of my own pocket for the LDN. Since it's an off-label use of the drug, my insurance won't cover it, but I gladly pay such a small price and it has been a HUGE help. My MS symptoms are pretty much GONE!! And my MRIs are stable and unchanged over a year ago!! BTW - the Copaxone (glatiramer acetate) is the ONLY one of the mainstream MS drugs that I would even CONSIDER USING! It has the best safety record and the most benign side-effects! And I carefully and extensively researched ALL of the MS meds with the expert help of a WONDERFUL PhD pharmacist, Alexa Drnjevich! I elected to FIGHT this damned disease with Dr. George Jelinek's "Overcoming Multiple Sclerosis" recovery program, LDN and Vitamin D3! It seems that I made the right choice! My symptoms are pretty much GONE! I don't know if my MS is in REMISSION, time will tell. But it's at least NOT PROGRESSING!! So I'm thankful that Dr. Bihari did all that work years ago with LDN in treatment of MS! So LDN, sadly, is the best-kept secret in the MS community, and Big Pharma wants to keep it that way!! But there are some efforts under way to get the clinical trials done and get FDA approval in the low-dose formulation, and at least one company is committed and actively pursuing it! So Maine-iac, there are no side-effects to be concerned about! Biggest problem is finding prescribers who are familiar with the drug! Let me know if you need so;/me help in finding a prescriber! Have a good day! Stay in touch!
@A MyMSTeam Member - Well, I've been on Low-Dose Naltrexone (LDN) since January 2014, and Dr. George Jelinek's "Overcoming Multiple Sclerosis" recovery program since Sept. 2013, and in my recent MRIs a couple of weeks ago - my MRIs are UNCHANGED compared to a year ago - NO NEW LESIONS - and NO EXPANDED LESIONS! And my MS symptoms are pretty much all gone. I'm thrilled to death with LDN! It's CHEAP AND ORAL!! Your neuro may not be willing to prescribe it, You might need to try your PCP, or a physical medicine Dr. or a pain specialist. The neuros are pretty much all in the pockets of Big Pharma and Big Pharma wants us on the obscenely expensive $5500/month mainstream MS drugs!
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