New lesions after 10 months on LDN

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New lesions after 10 months on LDN

Postby MSnik » Tue Jul 17, 2012 5:12 pm

Can anyone share with me hearing about or experiencing new lesions while on LDN? I spent 7 years on Rebif, with absolutely no new lesions and then developed neutralizing antibodies and was taken off it. After being told I needed to be "med free" I convinced my doc to allow me to try LDN. Getting it from a reputable pharmacy and taking 4.5 mgs nightly- I just had my first MRI in a year. 2 new lesions, both in my brain stem, both glowing with contrast, both signifantly large (2 cms). My doctor is screaming he wants me on Tysabri or another DMD.

I have zero symptoms. I am clinically stable and feel terrific! There is no reason for me to want to stop LDN; but the idea of 2 large lesions is frightening.

Can anyone suggest anything? Should I try remaining on this 6 more months and have a repeated MRI? Should I give up? Is it possible that its just not working? Can anyone shed any light on this for me? Neuro appt THursday night, where we are going to battle this out...

Help!
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Re: New lesions after 10 months on LDN

Postby patticake66 » Wed Jul 18, 2012 2:08 pm

I have been taking LDN for 2 years. I don't know if it has made any difference. I also take copaxone...again I don't know if it is working. After reading through hundreds of LDN testimonials, not many say anything negative about LDN. It depends on who you talk to, and what their MS disease is like for them. I feel LDN is overrated and the effects are exaggerated. People who go into remission claim it is the LDN that is halting the disease process but who really knows? Desperate people will try anything...I don't blame them and I feel maybe LDN just doesn't work for you like other DMD's don't work for certain people. Listen to your doctor...not the people on the internet. Good Luck.
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Re: New lesions after 10 months on LDN

Postby MSnik » Wed Jul 18, 2012 2:18 pm

Patticake,
Thank you for your honesty. I actually called Skip today, the pharmacist where I get my LDN. He says that he has NEVER heard of anyone developing a lesion while on LDN- and to be honest, I cant find a single case documented.

Although I do not argue that it may be overrated and overexaggerated- I also have to say, ive been on Copaxone and Rebif, and had horrible side effects on both. Im allergic to Copaxone -I stop breathing on it- I built up antibodies to Interferon and am afraid to try again. I was horribly sick after building up those antibodies...

I see my neuro tomororw, he is going to argue that he wants me back on Interferon. I am going to argue that I feel terrific....whats more important? The clinical presentation (The fact that I fee/look and act fine) or the radiographical presentation, the fact that there are new lesions? I really dont know......realizing that lesions USUSALLY correspond with symtoms, I seem to be the exception- I have no symtoms at this time..but yet I have a lesion glowing under contrast...is it the LDN keeping me feeling good and masking any problems?
Who the heck knows.

Im a cynic - and dont buy into any miracles...but after 7 years of having MS, to be doing as well as I am, makes me wonder...if it aint broke, why fix it?

Thanks.
N
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Re: New lesions after 10 months on LDN

Postby questor » Wed Jul 18, 2012 5:13 pm

patticake66 wrote:Listen to your doctor...not the people on the internet. Good Luck.

Wow, that's the best advice I've ever read, here or anywhere.

--Tracy
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Re: New lesions after 10 months on LDN

Postby MSnik » Wed Jul 18, 2012 5:35 pm

Its good advice, until you know the entire story. 1 year ago, and after 6 years on Rebif, I was falling apart. I was developing neutralizing antibodies to Interferon. I developed melanomas on my body, was depressed and was overall feeling lousy. CLinically, I had relapses of symtoms, but no new lesions. When the antibodies became evident, I was taken off Interferon. I had previously tried Copaxone but am allergic to it. I was tested for Tysabri, and am JC positive- and my insurance would not allow me to try Gilenya. My doctor told me to go med free for a year.

During that time, I discovered LDN. I had no other options, I talked my doctor into allowing me to try it. Amazingly enough, I felt better within a few weeks. After 6 months on it, I felt amazing. Fast forward a few more months.

I just had an annual MRI and the lesions are there. According to my doctor, I MUST go back on the Interferon because its the only thing that is FDA aproved and kept me stable...stable? I had 6 surgeries of melanoma removed from my body, I suffered for 6 months with liver problems and turned yellow with jaundice- I was a raving lunatic...and his response? He doesnt have to live with me, he has to take care of my brain health....
Well brain health or not, there is no way that a 30% decrease in progression or new lesions is enough of a risk to substantiate the side effects I experienced...and right now, Im working 50 hours a week, teaching part time on top of that and just graduated Graduate school with a 4.0. I also am married with two children. Based on the fact that I have Never felt better...should I really listen to my doctor or listen to my better judgement which says not to go back on the poison when its pretty evident that LDN has helped me to feel better and regain my life?

Which, by the way was the original question.....
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Re: New lesions after 10 months on LDN

Postby DougL » Thu Jul 19, 2012 4:04 am

nothing to say here anymore
Last edited by DougL on Tue Jul 24, 2012 9:21 am, edited 1 time in total.
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Re: New lesions after 10 months on LDN

Postby MSnik » Thu Jul 19, 2012 4:17 am

Wow. Happy pills? Mood and energy? Im not sure if you are taking LDN - or why you would be taking LDN if you are so unfamiliar with the drug...but as my original question stated, is there anyone who has any information about anyone developing a lesion while on LDN? There is no documented case ANYWHERE in the world of LDN not helping to stop progression and relapses....

I thank you for your comments; however as a vetern of all things MS, and a vetern of trying every single DMD on the market with the exception of Gilenya, I have to say, LDN is not a happy pill, nor is it a mood enhancer. Its a endorphin booster which in turns, tricks the autoimmune system into releasing short term endophins, by way of the pituatary gland, in order to prevent the body from attacking itself. There is scientific evidence that this works for thousands of people worldwide and for me, Id have to say from a clinical standpoint its worked as well. What it hasnt done is stop attacks on my brain radiographically, and thus im looking for anyone who has been on this drug for any amount of time who has had a MRI and seen new lesions develop.

the new release by the JAMA was not a true trial, it was randomized and not very well monitored. There is still evidence that Interferons and Copaxone reduce relapses and progression, and this "new" journal announcement has been out at least ten times in the past eight years...depending on who you ask, or who did the trial, or where the pateints were choosen from, youl interpret different answers. Dont believe everything you read...which is why Im asking for real people with real experiences to please comment on whether they have had any developements while on LDN.

Seems im not getting much of a response here which answers my question, but Ill keep waiting and hoping.
Doug- Thank you for the good wishes, I do appreciate them. And, positive wishes are always accepted...but if you are on LDN, and if you have MS, please educate yourself further on what LDN is supposd to do and why you are taking it....its pointless to advocate for a drug which we are trying to push thru FDA approvall if you dont understand why you are taking it...
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Re: New lesions after 10 months on LDN

Postby DougL » Thu Jul 19, 2012 4:34 am

...
Last edited by DougL on Tue Jul 24, 2012 9:21 am, edited 1 time in total.
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Re: New lesions after 10 months on LDN

Postby patticake66 » Thu Jul 19, 2012 4:47 am

Just to be clear, let me clarify what I was trying to say...some drugs work for some people and some drugs don't work for some people...my point...LDN does not have significant scientific studies in regards to lesion development. I've searched and discussed this with my neuro. The proof is just not there and I know skip is a respected pharmacist but exactly what is he basing his statement on in regards to saying that he never heard of anyone developing a lesion on LDN. I want to believe in this as much as the next person but statements like that is what confuses people when they turn to the internet. Common sense would tell you that out of the thousands of people who take LDN, someone must still be getting lesions. It is just not documented which leads you to having to take prescribed DMD's. I want proof something slows down MS....
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Re: New lesions after 10 months on LDN

Postby MSnik » Thu Jul 19, 2012 4:57 am

Patticake,
I get it. I truly do. Did you see the JAMA (journal of American Medicine) report which came out yeterday on DMDs? Its interesting, but depending on how you interpret it, its still not evidence that DMDs work, or dont work, to slow down progression.

Just to be clear, I am in the medical profession. I do not get swayed by anything I read on the internet, but I am reaching out to this community in hopes that someone can shed their experiences with radiographical results while on LDN. I have to argue one point with you though, there are now 7 trials going on in the US and there are hundreds of trials (patient sponsored) in the UK and Australia, so there is evidence of disease reduction out there. Skip, who I have heard speak in several lectures, including the LDN conference in Ireland last year, is a wealth of information. He may not be right about all things, but he doesnt say anything he cant back up with where he got the info from. Sometimes, the info is subjective and worth looking into further, but its there if you look for it.

Like you, I would love to know that something slows down MS, but not knowing your level of progression, I can only speak for myself. Since stopping Rebif, I now sleep through the night, I have significant less discomfort from neuropathy, I no longer have bladder issues with frequency, I have been able to walk further, exercise more and even return to doing things which I had lost the ability to do due to balance issues- horseback riding, specifically jumping- was a passion of mine. I hadnt done it in 5 years due to balance issues...I now am jumping 3 foot fences again and trusting myself. I can walk miles, where before, I could walk only a 1/2 mile without being completely exhausted. I now run on my treadmill instead of walking on it. I now can complete a full P90X Cd without having to quit. I couldnt do this prior to LDN. Im not saying its a miracle, but going into that last MRI when the tech asked me "how have you been feeling?" My answer was fantastic!!!! I had zero reason to think that I was going to see changes....

So I ask you this, whats more important? Feeing good and being productive and happy, or worrying about what shows up on the films? Whats your take on that?
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Re: New lesions after 10 months on LDN

Postby patticake66 » Thu Jul 19, 2012 5:26 am

Funny you should ask that...I was diagnosed in 09 with numbness in my legs. CIS was the diagnosis with an MRI that showed one spine lesion and two brain. I have not had any new symptoms since. My left arm bothers me occasionally but that is due to the spine lesion. Was immediately put on copaxone. One year later, I started LDN...copaxone every other day. I went for any MRI this past January. I told my neuro that I feel fine...like I don't even have MS. I told her I didn't want to know the results of my MRI for two reasons. One being that if there is progression, knowing this will only send me into a depression. And second, I will not take any other drug other than copaxone. I would rather ride out the disease that put the other drugs into me. That is how I feel. So to say that LDN is working for me, I have no idea. I feel great and that is all I need to know. I am however willing to go on BG-12. I will cross that bridge when I get there.
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Re: New lesions after 10 months on LDN

Postby MSnik » Thu Jul 19, 2012 6:22 am

Wow Patticakes. That's an interesting story and I admire you for it. Its a good argument for NOT listening to your doctow and doing what you feel is right. I too am interested in BG12 and am looking forward to hearing more.
Please email me and keep in touch.....
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Re: New lesions after 10 months on LDN

Postby questor » Thu Jul 19, 2012 7:20 am

MSnik,
I got my first LDN prescription from a doctor at the UCSF MS Center. I used it along with Copaxone for a year before stopping because of spasticity issues. I posted a comment earlier about the value of listening to your doctor, but I'm well aware that the answer you get to a question depends in large part on who you ask and how you phrase your question. Any chance you could get evaluated by a doctor at a center like UCSF that has direct experience with LDN and MS?

The website I have found most useful for info about LDN is ldnscience.org, there is a contact page that may be of use to you: http://ldnscience.org/contact-us

I have never gotten a clear answer from a doctor about the typical lifetime of active MRI lesions. In your case, it may be possible that the active lesions developed while you were using DMD's, not while using LDN.

I've had several doctors tell me (including a doctor at UCSF MS Center) that probably the best thing I can do to slow progression is to get as much physical exercise as possible. If LDN is helping you do this, I'd recommend staying with it. I'd still be using it if spasticity hadn't become such a problem for me with it.

If possible, consider using LDN while simultaneously using a DMD. Copaxone was the only drug I remember that could be used at the same time as LDN, but there may be others.

Good luck with your decision, and your health,

--Tracy
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Re: New lesions after 10 months on LDN

Postby MSnik » Thu Jul 19, 2012 6:15 pm

Tracey,
Wow. First of all, thank you. Your answer was really helpful. Let me first say that my MS specialist is actually the best known doc on the east coast, and is in charge of the MS Center at Robert Wood Univeristy Hopsital, a very large hospital in the NJ/ NY area. I have full confidence in him and to the best of my knowledge, he is one of the only MS specailists who actually believes in LDN.

Secondly, I saw him tonight. ...tonight was the night when I knew I was going to fight for answers...and a LDN script. I had a feeling he was going to push me for taking an Interferon again, in which case I knew I couldnt take LDN. Imagine my surprise when he informed me he wanted me to try Copaxone for 6 months...and keep using LDN?

I have MRIs every six months; therefore there is no reason to believe that I developed this while on Rebif...I have had 2 MRIs while on LDN and the first was clean, the second showed the new lesions..Im pretty sure that LDN alone, didnt protect me enough...but it certainly made me feel good. SO, now the real question, how will I do on Copaxone? I have the paperwork in, Ill await my shared solutions call- and I will repeat the MRI in 6 months...AND I walked away with another years script of LDN. Happy days. I guess.

Having done sub-cu shots before, I do not look forward to doing 7 a week...im very tiny, and I can only imagine what my skin will look like in 30 days...any suggestions on how to avoid, or deal with site injection reactions?

Thank you. Your comments were very timely.
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Re: New lesions after 10 months on LDN

Postby questor » Thu Jul 19, 2012 8:20 pm

MSnik wrote:Having done sub-cu shots before, I do not look forward to doing 7 a week...im very tiny, and I can only imagine what my skin will look like in 30 days...any suggestions on how to avoid, or deal with site injection reactions?

MSnik,
It sounds like you have a great doctor who is giving you good advice.

I began using Copaxone in '98 and consider myself lucky to have never had a problem with the injections.

I do not inject in my arms (I'm too lean) and have learned to be somewhat adventurous in finding spots with enough subcutaneous tissue to support injections (where I can pinch at least an inch). I use upper thigh locations, both left and right sides of my thighs, areas of my side buttocks, my belly, and the sides of my mid-section.

My advice would be to be a little adventurous, and to not stick strictly to the printed guidelines for injections.

Also, I have never been able to use the auto-injector, I'm much more comfortable doing the injections manually.

In reference to my previous post, a web search turned up info about the typical lifetime of an MS active lesion.
Typically 6-8 weeks according to http://www.prohealth.com/blog/boardDeta ... esclerosis

Good luck to you...

--Tracy
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