Side Effects while on LDN...

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Re: Side Effects while on LDN...

Postby seeva » Mon Jan 28, 2008 12:56 am

Arron wrote:[size=18]Let's gather all the information from people who tried LDN and experienced negative side effects to see if we can discover some common issues.

Please copy and paste the following into your posts

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

I am 59___ years old

I am male___ (male/female)

I have RR/SP/PP/PR MS for _10__ years

I tried LDN for 10___(months/years) long (if multiple times, provide info on latest attempt)

I took 3.0____ mg's per night

I obtained my LDN from sydney_____

If I know it, the filler used was calsium carbonate______

My doctor was IVAN LORENTZ WESTMEADMEDICAL CENTRE_______ in SYDNEY______

I have the following known allergies: NONE_______

I was also taking the following medicines at the time: ________ (important!)SOMAC40MG,LOVAN20MG,DETRUSITOL4MG,BACLOFEN10MG

My side effects with LDN were NONE______"

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?nam ... opic&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 :)[/size
I LIKE TO THANK FOR DR.BOB LAWRENCE AND HIS STAFF FOR THIER ADVICE AND HELP ON LDN HOW TO TAKE AND THE TIME.DR. BOB HE HIMSELF A M.S SUFFER AND TREATING M.S PATIENTS IN THE UK
REGARD SEEVA]
:roll:
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Postby Kathyjo » Fri Feb 01, 2008 4:48 pm

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"
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Re: Side Effects while on LDN...

Postby carmel » Tue May 27, 2008 11:04 pm

this is am essage for seeva.
Were you able to get LDN in Sydney?
I would love to know where.. Please tell
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"I had side effects while on LDN treatment for Multiple

Postby shunoodle » Wed Dec 03, 2008 9:30 am

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.
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Postby DIM » Wed Dec 03, 2008 12:31 pm

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.
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Postby shunoodle » Thu Dec 04, 2008 6:38 am

DIM wrote: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.


Unfortunately I get my prescription by the 100 but I shall definitely ask for a different filler on my next batch. Thank you for the advice and if I can help in any way let me know.
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Postby ScutFarkus » Thu Oct 01, 2009 5:26 pm

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.
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Postby DIM » Thu Oct 01, 2009 10:38 pm

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!
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Postby popsie » Sun Oct 04, 2009 1:35 am

"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?nam ... opic&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
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Postby marian » Mon Jan 18, 2010 7:06 am

After 2 years still: insomnia and vivid nightmares

But I am not giving up!
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Postby popsie » Mon Jan 18, 2010 7:06 pm

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.
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LDN

Postby rethink » Tue Feb 09, 2010 6:18 pm

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.
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7 yrs on LDN

Postby KikiT » Tue Jul 20, 2010 5:29 pm

Need to address this LDN..Dr Bihari was my doc. He started me on 4.5 mg (Lactose filler) and after 6 months. Felt some bladder improvement but was still not sleeping. He felt I may be slightly immune so he put me on 6mg...Felt great, slept great, no stiffness. After 6 months, put me back down to 4.5mg and was feeling the same as on 6mg. He told me more is not better. I could dream a full length feature film, alot less fatigue a overall well being on 4.5mg.I am 56 yrs old,have PPms, have progressed some but not nearly as much as others not on LDN. Seems I progressed after I got the shingles.I am about 5.5EDDS.was about a 4 Seven yrs ago.
NOW for the weird part.... I can no longer tolerate 4.5mg. I get spasms,and severe leg cramps during the night and stiffness in the day. Went down to 3mgs and leg cramps stopped but still stiff during the day.Pharmacist at Irmat in NYC said your body changes andI may need to go to 2mg or1.5.
I do believe LDN has helped slow progression but worried now that I need so much less. It has happened to 2 others I know also.I am experimenting with dose and will report back.
My husband is on 4.5 as a cancer preventative. He feels no difference. The stiffness seems to be a good dosage indicator for MSers.
Dr.B used lactose filler only so I stuck with that. Calcium Carb. was a no-no when I started, Many reports not to use it. Avicel,lactose and acidipholus are OK. Always take between 9PM and 3am...Dr.B's orders.
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LDN

Postby popsie » Wed Jul 21, 2010 5:36 pm

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

I am 61___ years old

I am female___ (male/female)

I have RR/SP/PP/PR MS for SP for 15 (RR for 30Years)___ years

I tried LDN for 1 year___(days/months/years) long (if multiple times, provide info on latest attempt)

I took 3.00____ mg's per night

I obtained my LDN from _West Lindfield Sydney____

If I know it, the filler used was _rice _____

My doctor was _______ in ______

I have the following known allergies: _numerous + 3 anaphlatic shock______

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

My side effects with LDN were insomnia, hot hands, hot flushes spasticity______"
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Side effects on LDN

Postby roadaction13 » Sat Jan 15, 2011 11:03 am

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

I am ___ years old

I am ___ (male/female)

I have RR/SP/PP/PR MS for ___ years

I tried LDN for ___(days/months/years) long (if multiple times, provide info on latest attempt)

I took 4.5 mg's per night

I obtained my LDN from Bayview Pharmacy (in Rhode Island)

If I know it, the filler used was microcrystalline cellulose

My doctor was Dr. John Straus (MD/naturopath) in Providence, RI

I have the following known allergies: seasonal, dogs, sensitive to gluten and dairy

I was also taking the following medicines at the time: tysabri, low dose testosterone, amitriptylline, vit D, fish oil, DHEA, stool softener

My side effects with LDN were 3-4 nights partial insomnia (felt asleep and awake at the same time, ongoing vivid dreams.

It's only been 2 weeks so too early to see if it's working, i guess.
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