I began taking LDN about 2 and a half weeks ago, on 5th October. I started as advised on 1ml each evening for the first week, then increased to 2ml for the second week. I am now half way through the third week and on 3ml.
Trouble is, I haven’t noticed any change as yet and was just wondering how long is normal before feeling any benefits.
I suppose after reading so many people’s stories about how wonderful it has been for them, I was probably expecting miracles.
Can anyone give me any advice on how long and at what dose should I be feeling any benefits.
As it now costs £17.50 per month, I don’t want to carry on paying for something that isn’t going to help, but I wouldn’t want to give up too soon.
when i started ldn over 5 years ago i was advised 3mg for a month then 4.5mg.(tho i believe increasing 1 ml as u describe is now recommended) i saw benefits after 2 days. i was one of the lucky ones tho i admit that a fair bit of damage had been done before i started it. i have had niggly things for 5 years-this year having first huge relapse-since june and still have speech problems and right side goosed! i understood that ldn or anything else would not cure ms. we all have to do what feels right for us. i have no regrets at all re my chosen choice. good luck with ur decision.
i was never offered anything despite being told i had aggressive ms. long story! i complained re neuro,health board gave me written apology blah blah but by then the damage had been done which nothing( as far as i’m aware) can undo.
hey ho-thats in the past-i just get on as best as i can with support of gp.
i had a similar problem. i noticed odd symptoms,but my gp wouldnt help me. didnt even record most of my consultations with him,and called me an attention seeker,and told me to get a grip,theres nothing wrong with me. i was however told i had ME,but tha was it. this was 95,and for 4yrs+ i was given no meds of any sort,and was having many relapses(lost eyesight,cant use below my waist,hold anything amongst a few)) and like many,alot of damage occured. my MS was diagnosed by MRI. was normal to have a lumbar puncture,but i was told there was no need,they saw from the MRI.
i then had to fight for beta-interferon for years(writing to NICE,MPs),and finally made it. have been on it since 99,and has reduced my aggrssive RRMS.
Fantastic that you got beta interferon - well done you. Such a shame that we have to fight for treatment. I am currently fighting my GP for arolax. I am determined to win. Hideous bowel problems and the treatment that they have prescribed doesn’t work effectively. Please no posts about what has worked for you pleased that they have worked for you but I have tried them all. So now my crazy dangerous strategy is to stop eating. Haven’t eaten for 6 days. No more worry about my bowels I have nothing to poo - euykk sorry. Feel fantastic not having to wear hideous incontinence pants. I feel normal again in normal knickers. Committed last time I tried to eat realising how stupid I am being Going to deliver a letter to my GP tomorrow about my stupid strategy. If she still won’t prescribe. Iam going to ask for a prescription of supplement drinks. What a waste of money. £1.80 a bottle and to meet my nutritional requirements i will need 5 and 30mls procal shot 3 times a day. I am only asking for a new better suppository which many patients have not ms have had fantastic results risk. Is it going to kill me??? Bl…dy doctors. I believe the hipocratic oath says doctors should do no harm. Well she has is certainly harming me. Please don’t reply how stupid I am being I already know Hugs Min xx
5 weeks on ldn on a dose of 2.0 no improvement on balance and walking still dreadful but must say feel less fatiqued and happier in myself so for me that is a brucie bonus and worth staying on ldn
can i please ask what is the dose of ldn most people take?
Glad to hear you are less fatigued since taking LDN - that was the one symptom I was hoping for great things on, but after nearly 3 weeks (now on 3ml) I still seem to be spending more time sleeping than awake. My balance and walking is awful too, but I can live with that, its this awful fatigue and fuzzy head I really can’t stand.
I think the most common dose is 4.5 ml which is what I am working up to (increasing 1ml per week).
I’ve decided to stick with it for a while longer and hope things may improve.
I have read that you can well get worse before getting better, as your body adjusts. I would say a couple of weeks is too short to make a judgement. I am onto my third month with LDN and as yet I cannot say I have seen much difference.
Personally I am inclined to give it 6 to 12 months. If it is doing me no harm then I shall probably carry on. It is a long term commitment and to be honest, as someone with PPMS there is not a lot else on offer.
At £17.50 I am guessing you are getting it in liquid form. Is it cheeper to get capsules?
LDN is subtle stuff, I don’t pretend to understand it. It does seem to affect different people in different ways. Me - it keeps fatigue at bay for longer, gives me a bit more energy and it definitely makes it easier for me to hold on before going to the loo, accidents are almosdt a thing of the past. Sort of makes good days better and bad days less frequent.
It sems to take a while to kick in and there is no ‘Eureka’ moment.
I would suggest that you persevere for at least two months and compare now with two months ago
It sounds like you have increased the dose too quickly and would benefit from a slower introduction. Try reducing to 1ml and stick with that for a month before looking to increase. Assuming you tolerate this amount ok, increase by .5ml every couple of weeks or as you get used to the drug.
Sadly, rushing often leads to a worsening of symptoms and you will probably be better off taking the slow approach. Apparently, there are a few people who take ldn for a year before reporting benefits, so plenty of time to go yet.
Paul - the capsules are dearer. And do give it a good trial - could take several months before you notice anything. We are all so different. l have had SPMS for 30yrs. And have taken LDN for 3yrs. l certainly feel more positive more alive. l only sleep for about 3-4 hrs a night - never sleep in the day. Have been like this for 30yrs. My MS has not progressed since l have been taking it. l did run out of it over xmas - my fault - and was surprised how better l felt once back on it. lts not a cure - but it certainly helps you cope better your symptoms. A lot of folk take it to give them back control of their bladder - which is a good reason to take it.
lf your GP will not prescribe it on the nhs - you could ask if they would give you a private prescription to buy it - saving you the fee that emed charge. l have just changed GP’s - my previous one would not prescribe it but was all for me taking it and did monitor any change in how l felt. My new GP - l have yet to ask - but as l know she does prescribe it for someone l know with ms-
l am hoping she might do the same for me. She does prescribe Sativex - had no problem with that.
l have far less fatigue and no brain fog - since starting on LDN. And l am on 4.5ml. lts not just MS that it is recommended for - also Parkinsons/ Fybromyaligia/and Cancer. Like you said - there is nothing else on offer!!!
im glad to hear you all say that it can take up to one year before any major benefits apply it will help me adjust in my mind to not expect fantastic results too soon plus i will stay on 2.0 for a lot longer than i was going to and be patient
I was advised to start on 1.5ml and increase by 0.5ml every week until I get to 4.5ml.
I have done this and have suffered on side effects that I can tell. I am having to take a break for a week as i have an operation coming up that requires a general anaesthetic.
I think the key is not to rush and not be afraid to back the dosage down if you feel that might be best.
Thanks Paul. I was told to start on 1ml and increase by 1ml each week until 4.5ml.
How do you go on about taking a break. Are you cutting down gradually prior to your operation or just stopping? I didn’t know if it was ok to just stop altogether?
Well as far as I have read, it is OK to take a break of a week or so and then pick up where you left off.
I have just stopped. It will be interesting to see if I notice not being on it. The big problem with LDN is you can’t always tell if it is doing any good.
You can get away without stopping if you let the hospital know as they can adjust, but I decided not to risk it.
Thanks for the best wishes, it is a small op so should not be a problem.