I just stopped taking MS drugs this Monday to give LDN a shot for 6 months. I am really concerned I might have made the wrong decision and being foolish? If anyone here takes only LDN for their MS and NO other MS drugs, PLEASE post here and let me know and how you are doing on it in regards to progression and MRI scans?
I would be incredibly grateful for feedback on this. Thanks.
I know my neuro would tell me I am CRAZY and give me a huge lecture, but I am not willing to go back onto toxic MS drugs at this time. I have tried avonex (did not work at all), tysabri (did work but I am JC+) and then tecfidera (gave me horrible side effects and leukopenia!!! … and very concerned about increase of cancer risk).
We have a lady who has tried DMDs with no or bad results so she is enquiring about trying LDN. The DMD Brigade says she should keep on trying DMDs and because I disagree I am called ‘ignorant’ by some ignoramus called Hobs.
[Edited] I will always give my opinion whether that person takes the advice or not is entirely their choice.
Hi Lilly, Sorry but yes you are crazy to stop DMDs and go solo with LDN. DMDs have valid research to show they slow disease progression and reduce relapses. LDN does not. I am sorry that you have been suffering bad side effects with DMDs. Have you tried every option? What about rebif or another you haven’t tried. Please don’t abandon DMDs in favour of LDN who knows what damage could be done without you knowing. Why don’t you persevere and find a more suitable DMD and try LDN as well? Stay strong and please keep trying Min xx
i took ldn only for over 6 years BUT that was not through choice.
i am on scottish/english border on scottish side.
i was diagnosed in 2005. neuro at that time (he has since moved further north) was a complete ar*e! in 2007 he changed his mind (i know how difficult ms is to diagnose!) and so i requested 2nd opinion via gp. saw english neuro once who looked at mri/history etc and confirmed ms.
so i had 2 brilliant english ms nurses but no neuro (the english one left shortly after!)
so i decided in 2007 to start ldn (with gp knowledge). all was ok-i did have 2/3 relapses which were severe enough to get emergency carers in but i recovered quickly (within a month) each time.
until july 2012 when regular users of this board know that i had a life changing relapse! whole of right side affected, speech, eyesight, bowel/bladder incontinence, emotional lability blah blah. english ms nurse and my own gp contacted the new english neuro for urgent help. he was brill-i really liked his attitude. he started me me on tysabri 9 months ago (aug 2013).
however the scottish/english issue became very apparent in june 2013 when i had another attack-that day was first time i have been truly scared in my ‘ms life’. i felt as if whole body was closing down so neighbour took me to english hosp-where my neuro was based. saw an out of hrs gp (was a saturday) who tried to tell me i must have uti-have never had one in my ms time! she gave me antibiotics-i was terrified cos i felt something else mega was happening! sent home-next day the local hosp cos i still felt awful and was losing power rapidly. scottish duty dr came-stopped antibiotics-confirmed i didnt haver uti.
gp and i had good talk and decided for my own safety and future care that i came back to new scottish neuro.
and thats where i am now! have met new scottish neuro twice only in oct 13 ad last week! however i should point out that the english one that started me on tysabri and the new scottish one are (i think!) very good listening men.
what has happened to me is very rare and i know of no-one who has been affected in this way. so much so i found comfort from the official local stroke charity because no-one in my ms circle knew how to deal with the issues i was/am experiencing!
so to sum up-i took ldn on its on because i wasnt offered/told about any other options. i did read about them myself and didnt push for them anyway. the ldn did what i expected of it for 5+ years.i have no regrets. today i am in powerchair and have carers in to assist me with daily living. am i frustrated at being ‘lost’ in the system? damn right i am! am i angry at neuro? the first one yes, the 2nd/current scottish one and recent english one? def not. they have both done what they can in the aftermath!
i dunno if this will help you any re ur decision. there are no rights/wrongs that fit everyone. we all have our own version of ms and how we cope with that is down to us.
for me i think the worse thing to be would become bitter and twisted/angry with what has happened. sometimes i do feel that but very quickly i realise the only person its upsetting is me! so one day at a time (tho if u have read any of my other posts thats 15 mins at a time!) today i have been on local bus with 2of my kids for icecream-a huge effort and drainer for me but i wouldnt have it any other way!
this has turned into a much bigger reply than i intended BUT thank you for letting me ‘let it out’
I’m newly diagnosed but I would def stay with ur dmd. Tysabri a powerful drug and if ur neuro thought u warranted it I definitely would be staying on it At the end of the day it’s ur choice. I said to a friend the other day I’d rather live for a shorter time but be reasonably well. Then risk taking no drugs and ending up really ill Good luck Em x
Anonymous you are not being nice. These neurologists do get things wrong sometimes, from experience I know that (neurology registrars anyway). I watched a symposium conference video once about an up and coming neurologist consultant. He said one in three diagnosis he was making was wrong. It’s only when they get a lot of experince and have all the information available to hand they get it right.
We are here to support each other and not be judgemental. Be kind.
I have (without much option) taken LDN alone. I moved to Galicia and thought that I wouldn’t be able to stay on Rebif.
I had a huge and disabling relapse a year later and my neuro got me back onto Rebif again. At that time, it was Rebif +LDN but the LDN does nothing now, so I’ve stopped that.
If you can, stay on a DMD. If my neuro was to offer me Lemtrada, I’d hug him. I applied for the trial in 2001, but was unsuccessful.
My relapse rate is 1 every 3 years (or so) but before Rebif I was relapsing constantly.
I have PPMS have had it for 10 years, have tried alll the usual MS drugs and every time they have floored me , have been taking LDN now for 8 years with no side effects , feel it keeps my brain ticking over and it keeps my fatique in check as long as I play by the rules.
There is a distinction between drugs which are designed to modify the course of MS, DMDs, and drugs that may help with symptoms.
LDN is not a substitute for DMDs, it will not alter the course of the disease. Some people think that it has helped them with symptom relief.
MS is a serious disease, it is not to be taken lightly. DMDs do have side effects but not everyone experiences them. It may be a case of trying different DMDs until you find one that is better suited to you. Unfortunately there are no easy answers.
Actually LDN advocates are very good at marketing. They’ll tell you not to take LDN with a beta-interferon, not with the newer drugs and they have no evidence to back up these claims. But there they are, out in the internet giving out ill-informed advice and people take this advice, without asking pertinent questions such as ‘what type of MS do you have?’
‘Do you have RRMS or PPMS or SPMS, or PRMS?’ The DMDs aren’t offered to those with PPMS and if I had PPMS/SPMS I’d take LDN. However I don’t and lost months of mobility in 09. Am I angry at the advocates? No, only with those people who push LDN whatever the type of MS.
The OP asked a question about DMDs and giving them up for LDN. Those of us who have done this and have suffered the consequences have answered the post.
I am not part of a brigade. Just a person with MS.
You may encounter them on this page from time to time. (yes, irony is in play here).
I bet this discussion hasn’t brought you any closer to making an informed decision. Don’t know why any mention of the LDN provokes such strong views. It is best to stay open minded and try not become part of either brigade. There are few points which you may wish to keep in mind;
DMDs record for preventing progression is somewhat shady, researchers are now in agreement that lesions themelves do not drive disability, so while DMDs reduce number of relapses taking them doesn’t necessairly prevent progression. Many people with MS who adhered religiously to DMDs had progressed. In my view the reduction of relapses allows body to recover and repair the damage and in that sense DMDs slow progression but there is nothing in these drugs that prevent neurodegeneration.
People respond very differently to different DMDs, for some people a particular DMD may be very successful for others it would be a failure.
A large Canadian study from the Summer 2012 concluded that people who had been on interferons were not better off regarding disability than those who were on the placebo.
I read dozens if not hundreds of people’s testimonials regarding the use of LDN. There have been few trials of the LDN and those were mainly paid for by the patients. It seems to me that about one third have had great improvements (including halting of progression), one third had moderate improvements and about one third with little effect.
If your doctor at some point recommended the use of Tysabri then that suggests that your MS is very active in which case you probably should revisit looking into a different DMD.
If you decide on the LDN you can take it with a DMD, but you won’t know which of them is working.
Just found the info on LDN on this website so maybe that’s worth a read? Ultimately your body your decision, if a total stranger offered you a packet of none descript drug on a street corner for free would you accept them?
