Side Effects while on LDN...

Kathyjo · Newbie Joined: Jan 17, 2008 Posts: 2

Hello,
I am new to this site and it feels good to be able to communicate with others about the crazy struggles that come with this baffling disease. I was on the UCSF study on of LDN, in the spring. I often find it is hard to really tell how treatments are working because of the daily variances of the disease. I feel like I shoot bullets at a moving target, unable to tell if I hit the mark. With LDN it was different, I felt significantly better the 2nd 8 weeks of the study, my fatigue was less, I could tolerate heat better and I just felt healthier.. When I went off the drug my improvements went away within a week.
The data was not evaluated until late fall. I was just informed, in January , that I was on LDN during the 8 weeks that I was improving. They decided that they would begin prescribing LDN if the patients wanted. Nothing has been published, but I was told that that the data did not prove any significant improvements with physical problems, but because enough people reported an improved sense of well-being they chose to prescribe. Go to the following url to look up the study. No results are posted yet. http://www.ucsf.edu/msc/research.htm
I have been back on LDN since early January, but have yet to feel any significant changes. I will keep you posted

"I had side effects while on LDN treatment for Multiple Sclerosis.

I am 60 years old

I am female)

I have RR/SP/PP/PR MS for15 years -I have had 2 or 3 different diagnosis, so I am not sure what I have now, possibly SP

I tried LDN for 8 weeks

I took4.5 mg's per night

I obtained my LDN from UCSF

If I know it, the filler used was ? I do not know, but I will check UCSF and new pharmacy to see if compounding was different

My doctor was at UCSF

I have the following known allergies: __Sulfur_____

I was also taking the following medicines at the time: Baclofen,(creepy crawly feeling in limbs) Gabapentin,(electric shocks in legs) Cymbalta (back spasm pain), Atenenol (blood pressure) My God, I sound pathetic, but believe it or not I am ok!

My side effects with LDN were vivid dreams and a bit of insomnia"

carmel · Newbie Joined: May 28, 2008 Posts: 1

this is am essage for seeva.
Were you able to get LDN in Sydney?
I would love to know where.. Please tell

shunoodle · Newbie Joined: Dec 03, 2008 Posts: 2

I am 35 years old

I am female

I have RR MS for 5 years

I have been taking LDN for 3 years 4 months

I take 3 mg's per night

I obtained my LDN from Lloyds Pharmacy - label on this batch says Martindale.

The filler used was Calcium Carbonate

My doctor was Dr Robertson in Bristol UK

I have the following known allergies:N/A

I was also taking the following medicines at the time: None (important!)

My side effects with LDN are not conclusive but I do have excessive night sweats having always been very cold in bed. Not conclusive whether these are due to LDN or MS (other forums suggest it is an MS thing). I also had very vivid dreams for the first 3 months but they have long gone - at this stage I think they were be related to the excessive heat generated at night. Regarding the night sweats - I find I don't suffer at all when in Asia - I presume this is to do with the necessary use of either air con or a fan.
I was very lucky to be diagnosed early with mild symptoms but those have now gone with the exception of occasional numbness in my finger tips. My energy has returned to what it was pre MS and I feel great. I am very thankful that I am able to get LDN and will be staying on it forever if possible especially given the other proven benefits - although anecdotal.
Dr Bihari is taking LDN himself as are all his family and he is reported to believe that everyone should be on LDN as a preventative for all manner of things, all auto-immune diseases, cancers, progression from HIV to AIDS etc .... for an incredible read, get a copy of 'Up the Creek with a Paddle' - the journey of an MS sufferer and the book that brought LDN into my world.
Good luck to all of you and I hope t works for you - from what I have heard there are a few who are unsuitable - I hope they find another solution.

DIM · Posted: Wed Dec 03, 2008 2:31 pm Post subject:

As far as I know and Dr Skip suggests calcium carbonate should not be used as filler for those with MS, you could change to Avicel, Achidophilus or other suitable for your case filler.

shunoodle · Newbie Joined: Dec 03, 2008 Posts: 2

ScutFarkus · Posted: Thu Oct 01, 2009 7:26 pm Post subject:

I had side effects while on LDN treatment for Multiple Sclerosis.

I am 42 years old

I am male

I have presumed RR MS for not many?? years

I tried LDN for 6 days long (if multiple times, provide info on latest attempt)

I took 4.5mg's per night

I obtained my LDN from compounding pharmacy in SF, CA

I have the following known allergies: dust, grass, trees, pollen, animal dander, lots more, but no drugs or foods

I was also taking the following medicines at the time: Copaxone, Nexium, Lipitor, baby aspirin, Vit-D (important!)

My side effects with LDN were extreme fatigue, difficulty sleeping, lack of energy

I stopped taking the LDN due to the side-effects. Having read more since this experiment, I should have instructed my neurologist to write the first prescription for a much smaller dose, like 1.5mg, and slowly worked up to 4.5mg. But during the week I took it, it was all pain, no gain.

DIM · Posted: Fri Oct 02, 2009 12:38 am Post subject:

Sorry for having those side effects you should know that the first days, week or even month on LDN you may suffer from multiple symptoms or previous symptoms re-appeared, it's to short one week period to make your decision for this medicine while you took it at the highest dose 4.5 gramms, my wife started from 1.5 gramm although she has had side effects!

popsie · Getting to Know You... Joined: Feb 01, 2009 Posts: 12

"I had side effects while on LDN treatment for Multiple Sclerosis.

I am _61__ years old

I am ___ /female)

I have RR/SP/PP/PR MS for _SPMS 12__ years

I tried LDN for 4 months & am still taking it_as it has definitely improved the spasticity at night until 10.00 in am__(days/months/years) long (if multiple times, provide info on latest attempt)

I took _first 1.5 for 2 weeks ( no benefit) have been taking 3 mg since___ mg's per night

I obtained my LDN from _local dr____

If I know it, the filler used was _I requested rice filler because I have so many allergies_____

My doctor was _______ in _Sydney Australia____

I have the following known allergies: _multiple - to all synthetics, preservative, drugs, foods etc______

I was also taking the following medicines at the time: _baclofen in pump_______ (important!)

My side effects with LDN were - I did have allergic reaction but desensed to it so now OK. I do wake 3 to 5 times a night & doze & wake from 3 am but have always slept badly & pre the pump was waking 15 times a night with intense spasms so by comparison what I am experiencing now is pretty good______"

Please spread the word about this survey to other sites so that we can get a good sample. The URL to refer people to would be:
http://www.thisisms.com/modules.php?name=Forums&file=viewtopic&t=297

If we gather this information, maybe a pattern will emerge.... Thank you for your participation! and Thanks to MSCareGiver and CCmom for prodding us to put this post together

marian · Newbie Joined: Jan 17, 2010 Posts: 1

After 2 years still: insomnia and vivid nightmares

But I am not giving up!

popsie · Getting to Know You... Joined: Feb 01, 2009 Posts: 12

Hi Marian,

I also have interupted sleep waking every two hours. But I have improved the insomnia a lot by always eating something when I take the LDN and always taking it as early as possible - 9.00pm. This means that although I wake a lot I do go back to sleep more easily. Also I find I can sleep better from 4am (Ithink the LDN has worn off by then) and sometimes, if I am allowed to, can sleep until 8.00am

I am also not stopping or giving up. I am more supple, can walk a bit better and have more dexterity in my left hand which means I can type better. I have not had any new symptoms since I have been taking it.

rethink · Newbie Joined: Jan 08, 2010 Posts: 8

I have taken LDN for over a year. Started with 2.5 and then after a couple od month increased to 4.5. The only side effect iI have experienced is vivid
dreams. My LDN comes from a compound pharmacy. I took this along wiyh copaxone. I have stopped copaxone and taking LDN by itself along with
vitamins and other supplements.

rethink
dx 1998

rethink.