Originally Posted by herekitty1960 (Post 393149)

The reason I'd like to go to the higher dose (eventually) is that the doctor seems to think there is more protection with the 4.5 dosage than with the 3.0 dosage. I've read that anything under 3.0 isn't going to help much. But I suppose it's much like MS....different for everyone. I'm still at 3.0 for now. I'll bump it up again in a few weeks and see how it goes. :)

Originally Posted by weegot5kiz (Post 393005)

curious what is the reason we are trying to force ourselves to take the highest dose, i talked with them<skips> and they agreed at my deductions of what happened at 3.0 for me and agreed 1.5 is fine and can be helpful and when i explained the residual effects of 5- 6 pills before ldn, are the same and better in a few areas and one its not as good but this is already more than i hoped for, dont force this kel i am sure this med and our wonderful illness are gonna do what they want to do when they want to do it. It just seems like you are trying to force your body to deal with a dose for some reason you think will make a a diff, yet from reading your post, i kind of see since upping it that high things have not been as good as before, just some food for thought


hope it works out well, be careful please kelly:hug:

Originally Posted by lady_express_44 (Post 384597)

Dr Bihari was of the impression (in 1994) that anywhere between 1.0mg and 10.mg was sufficient, with the therapeutic effects below 1.0mg being quite small. He suggested that 1.5mg to 3.0mg was the dosage “at which Mu receptor sites are substantially blocked while the Delta sites are substantially unblocked”. Dosages above that would cause “the effect of the preferential blocking action against Mu over Delta receptor sites (to) disappear, since the amount of the drug is large enough to cause at least substantial blocking of Delta sites while the Mu sites remain fully blocked.”

Ultimately (for whatever reason), he started recommending 4.5mg as the optimal dosage, and nothing over that as a rule.

Another of Dr Bihari’s recommendations was that we take LDN between 9pm – 3am, because our “POMC mRNA levels were elevated during the dark period, reaching a maximum level at 0200 h that was 2-fold higher than that occurring during the light period”. What difference that makes, I'm not sure :Scratch-Head:. . . but this was apparently how he came to the recommendation that we should take it during those hours.

He further recommended suggested that LDN was not compatible with the interferons.

I know there are people who aren’t (or can’t) follow those guidelines, and LDN is working in spite of that. However, those are the “exceptions” vs. the rule, and it would stand to reason that we would TRY to follow the rule, where possible.

For years now, the plan was for people to start at 3 mg LDN (or 1.5mg for those who were particularly sensitive to meds), but once they were managing that dose they would attempt to increase the dose to 4.5 mg. For some, there is a transient increase in MS symptoms when we are upping the dosage, such as weakness, stiffness, changes in sensation, muscle spasm, pain, sleep disturbances, fatigue or tiredness. These symptoms usually disappeared within the first week of treatment, but apparently in less than five percent of people, these side-effects may be more severe or last as long as several weeks. This is considered “normal”, or at least nothing to be concerned about . . . but many people give up too early when they don’t see immediate improvement with NO side-effects.

Rarely, symptoms may persist for two or even three months and in this situation, the ultra-low 1.5 or 2 mg dose is recommended, but still not as a permanent solution . . . as a gentler “introduction” to the med. However, normally, once the body adjusts to LDN the dosage can be increased.

Over years of trial and error of trying to follow these recommendations, some men (and petite women) found they experienced ongoing side effects at 4.5 mg, and were better off at 3 mg . . . and some like me (and Sally) had to try a few times before we were able to tolerate “optimum”. In my case, I also have to drop LDN down at the start of the cold season . . . so obviously not everyone can stay consistently at 4.5mg, even if they are normally perfectly fine at this level.

Ideally, everyone DOES want to TRY to persevere to 4.5mg (or min 3.0mg), but I suppose if they try for several times, for several weeks and still CAN’T adjust . . . then so be it. I have run into several people who have not seen any great improvement for several months, or even suffered with some side-effects for that long, but EVENTUALLY their bodies adjusted and LDN worked for them.

Those people (who are very sensitive) are very FEW and far between though, and most do try to get up to between 3.0mg and – 4.5mg. I would imagine that 2.0mg could be helpful anyway, especially for some symptoms, and perhaps maybe even for the disease process. I haven’t met anyone who is on that level of LDN (alone, without using Copaxone too), and where it has proven successful for reducing relapses/progression in the long run. Most I've run into at that level are on combo therapy (use LDN for symptoms only), or they quit after a few years because they don’t feel it is helping the disease process.

I certainly would stick with a low dosage if that was all I could handle, but I wouldn’t give up trying to get to optimal just because of a few transient side-effects. I just hate to see people give up so easily, and not get the benefit of a dosage which may ultimately be therapeutic for them.

Cherie

Originally Posted by SallyC (Post 393218)

Nothing is written in stone and we are, after all, still experimenting. Until it is proven and written in stone, I say, yes, try the different doses and then, stay with the doseage that is working for you.

Originally Posted by SallyC (Post 393218)

Cool it down a little, Cherie..:hug:

Originally Posted by lady_express_44 (Post 399712)

It seems to work differently for everyone, Brenda . . . just like all the meds.

Everything about this disease is basically "theory" at this point. They don't know what causes it, or why some of us respond to some meds, and others don't. They don't know if we all have the same disease, and they don't know why a person with one "apparent" lesion is totally disabled, and another person with 100 lesions is doing fine. :confused: All of the current meds we used are based one of many "theories", but so far none of those drugs have proven to make a lot of difference for the majority of people in the long run.

Cherie

Originally Posted by mom2five (Post 399719)

Originally Posted by mom2five (Post 399719)

Can you answer another question for me?

What side effects, if any, do you experience with the LDN?

This is the least talked about on the websites, perhaps because there aren't any side effects to worry about? I am more hesitant these days and don't want to be a guinea pig. :rolleyes:

Originally Posted by herekitty (Post 400185)

:rolleyes: I'm not holding my breath!! :p

Originally Posted by marion06095 (Post 399635)

It has been a while since I checked in with an update, so here goes:

I have now been on LDN for a couple of months, give or take. I am on a 3.5mg dosage. I remember when I first started LDN, I felt an amazing ease of physical movement, and an almost complete lack of the tremors that I had been having non-stop for years. I still have very little to no tremors. The ease of movement is still there, but along with this has come the realization that I now have a 61-year-old body that hasn’t been at all active in quite a few years. I guess that I have years of muscle wasting to undo. I often have the sort of body stiffness/pain that is understandable under the circumstances. It isn’t the same as MS stiffness and pain, though. It feels like I am an athlete who is training hard, and I guess that’s exactly what I am. I am building muscle mass that has been gone for years. To be honest, it feels wonderful – in a sort of awful way if you know what I mean.

On the practical side, before LDN I was a rollator/powerchair person when away from home, and a wall walker around the house. I have not used my power chair since I started LDN, and I have only used my rollator a few times; when I knew I’d probably want a place to sit down. I attribute my newly found mobility to an improvement in my balance, as well as a reduction in clumsiness.

In summation, I am still amazed at the improvement. I have had a few days where I haven’t felt all that much better, but those days are outnumbered by the days that I thank my lucky stars that I am one of the people with MS that is helped quite a bit by LDN.
:yahoo::yahoo::yahoo:

Originally Posted by mom2five (Post 399713)

How does it "interrupt" the progression of the MS?

Originally Posted by herekitty (Post 400497)

Thank you, Sally, for starting this thread. I would never have known about LDN if it had not been for this thread and all the folks who've contributed to it! :grouphug: