Who here takes only LDN and NO other MS drugs? PLEASE post and let me know....

[LillyMS]

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).

[fishead]

Lilly, I will be watching this thread too. I was on Ty and other drugs but am tired off all the BS with them. I want to go on LDN b/c it seems so "simple". I hope you get answers you are wanting. Have you spoken with anyone at NMSS about LDN???? Read up on LDN on their website? Probably could 'google' Low Dose Novantrone and get some info there. Good luck hun!

[fishead]

Naltrexone, not Novantrone. SORRY

[fishead]

Here is a link you may wish to try. It is in the NMSS site.
http://www.nationalmssociety.org/Tre...ose-Naltrexone

[LillyMS]

Thanks for that link, but what a shame and VERY disappointing that they didn't mention anything in regards to MRI lesions and whether LDN reduced lesions or had any affect on "progression".

This is very frustrating! What is the point of doing any "study' that left this crucial point out? My main concern is progression and keeping MRI lesions stable.

Guess I will find out for myself when I have an MRI in 6 months, no other choice. I am going to be a nervous wreck when I have that MRI until I see the results.

[fishead]

Yes the research was gravely flawed by NOT including a tangible end point. SHAME on them.

Did you read anything about how the low dose chemo helps with pain? I found that highly interesting!

[misslux]

I think saying "shame on them" is a bit much. Let's be realistic. A study tracking relapses and progression would take a lot of time and money. Plus the objective of the U of CA study was "To evaluate the efficacy of 4.5mg nightly naltrexone on the quality of life of multiple sclerosis (MS) patients." The Italian study was only to evaluate safety, pain, spasticity and fatigue.

I personally don't think this is pointless. There are PPMS people like me who are trying it for symptom management and others who are RRMS who take it with their DMTs to improve symptoms. Any data is good.

[LillyMS]

Ya I agree! It is rather upsetting they left out the MOST important factor!

Luckily, I have no pain thank goodness. Not yet at least.

I just had an MRI 2 weeks ago (MRI has been stable past 2 yrs but that's only because I was on tysabri for one year and then immediately tecfidera for 1 yr). Would it be too soon to get another MRI 4 months from now? I don't think I have the guts to wait 6 long months. . . because what if LDN is not working and I'm getting new lesions in the interim. That is my worst fear because I have severe burdon on the brain from the sheer volume of lesions (even the radiologist wrote this on MRI report) cannot handle anymore.

[LillyMS]

In that case. . . SHAME on the big pharmas who are too $$$ greedy they won't give a hoot about a dirt cheap generic drugs that cannot be patented and earn them a profit. Really sick world we live in.

[fishead]

Misslux,

I was highly INVOLVED in clinical research (even to the point of writing a protocol of my own. It is not hard to include end points such as an MRI result, when writing a protocol for a clinical study. YES shame on them, because they took the "cheap" way out. a Phase 3 study is smaller, yes, but each subsequent Phase (even further Phase 3 research) gets larger - the 'n must be as large as possible to prove a protocol. This is something that they knew in advance, and THAT is why I said "shame on them"

I am not "barking" at you hun (promise ), I just know what goes on and it was poor diligence that they ran a clinical study the way this one was carried out.

[fishead]

In that case. . . SHAME on the big pharmas who are too $$$ greedy they won't give a hoot about a dirt cheap generic drugs that cannot be patented and earn them a profit. Really sick world we live in.

EXACTLY. This is not a money making drug, and a full clinical trial takes 100's of 1,000's if not millions of dollars to finance. Their return is not profitable enough to sink that amount in, so they do poorly structured clinical trials. such as these. Sad!

[laurakim]

LDN use

I take LDN only for spasms. Must say it has done nothing to slow the progression but then I was quite debilitated when I began taking it. I've tried Avonex, Tysabri, and methotrexate all to no effect. When I began LDN, I had daily excruciating leg cramps. They stopped overnight with the LDN so it's worth it to me for just that reason. I'm lucky in that my neuro is a big believer in LDN I hope you get it and it helps you in the many ways I've heard it can. Laurakim

[misslux]

Who funded the trial in California and the one in Italy?

[ewizabeth]

LDN (low dose naltrexone) is not for treating MS per se, but for symptom management. If you are looking for something that is a disease modifying drug, LDN is not it, you need one of the injectables, or the pills or infusions.

I have had very good luck with Copaxone, and now there is a 3x per week version of the medicine which is a self administered injection. I find it very easy to tolerate but you will get variable opinions here and elsewhere online.

[1936siols]

treatments

I have had MS since 1966. Back then there were no drugs for MS. They did have ACTH treatments which meant a week in the hospital hooked up to IV. It didn'y seem to help that much so I stopped them. Ever so often they would come out with a miracle drug that didn,t work so I quit all drugs. I am under the impression that most of the drugs they have now don't improve what you alread have which is long standing.

I have lost the use of my legs, voice, body functions. I guess I feel there is not a whole lot more to lose. I cannot have MRI,s because of a pacemaker. I take no drugs. I do get the things normal people get like cancer but I guess I should feel lucky. MS no longer upsets me. I am happy.