Side Effects while on LDN...

[Tracker]

I am 54 years old

Female

Have had MS for 30 years

Have been taking LDN for 1 year

Started with 1mg, & noticed a positive difference immediately

Within a week I was taking 3mg, then onto 4mg but spasticity got worse, so went back to 3mg, & am happy on this dose.

My local pharmacy compounds this (and my 4-AP).

I was pretty much near death 1 year ago. Was taking methotrexate, clomazepam, baclofen. Asleep all the time, spaced out, felt terrible, didn't shower for up to a week due to heat fatigue ( I had to go to
bed for 2 hours to recover from the shower). Was virtually incontinent bowel & bladder

Had nothing to lose. Got on the web, discovered LDN & 4-AP - threw all toxic DMD's away, departed company from the neuro.

Incontinence, gross fatigue, face falling in the frypan when cooking on the stove (you would identify with that!), all disappeared with the LDN
Leg weakness disappeared with taking 4-AP

My life turned around with 4-AP & LDN !!!!!!!! Also take some Baclofen, but No DMD's

I am awake all the time, have great energy, people say I look well too.

I am a Huge LDN advocate

[patticake66]

I have been experiencing a very annoying skin rash since I started LDN (which is leaving scars). I just saw my neuro and I am stopping the LDN to see if that is the culprit. I also take copaxone but I am stopping the LDN first. If it is the LDN then I think that a side effect such as skin rash should be included with the LDN info. Many of the information I read online about LDN says "no side effects". I understand that there is little research done on the drug but sometimes you read about LDN and someone makes it sound as if it is the perfect wonder drug. My rash may also be from the copaxone but that is listed in the side effects. I am trying this for six weeks. I will let you know my results.

[patticake66]

I stopped LDN for 3 weeks. I started taking it again and the red bumps are back. I guess it is a side effect of LDN. I have been taking LDN for almost 2 years. I have a brain MRI in a couple of days. I am curious to see the progression of my disease. Did the LDN have any effect on the progression, slow it down or hopefully stop it? Soon to find out.

[popsie]

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

I am 63 years old

I am female

I have been diagnosed with both SP/PP & PP MS for 20 years

I tried LDN for 3 years

I took 3.00/4.5/ now 3.00 transdermal mg's per night

I obtained my LDN from GP

the filler used was transdermal in emu oil (Check oil is fresh as I had severe reaction one time when the oil was rancid. Now I buy my own emu oil and keep it in the fridge and give it to the compounding chemist to make up the new batch.

My doctor (Then) was Dr Tao (GP) in Sydney

I have the following known allergies: I have had 3 anaphlytic shock reactions (mercury being chelated, herbal detox tea, minomycin). I have been allergic to everything drugs, supplements, chemicals, mould, food etc. Have only managed to take what I do (LDN every second night & baclofen in pump & a few supplements) by constant & frequent visits to the kinesiologist with whose help I am much less allergic

I was also taking the following medicines at the time: baclofen in pump (important!)

My side effects with LDN were
1 insomnia (6 months),
2 Hot hands at night (come and go but not so intense now)
3 Severe spasticity apparently this is due to the fact that LDN boosts the cytokines & this can have a side effect of spasticity for those who are prone to it. Kinesiologist sorted this out for me but we found that my body can only take LDN every second night.

I constantly have to be aware of what I might be reacting to and it took me more than a year to find what LDN dose worked best.

I am a HUGE fan of LDN.
I have had no progression and improvement in up to 15 symptoms.
PEOPLE HAVE TO GIVE LDN A CHANCE TO WORK. DO NOT GIVE UP AFTER A MONTH OR TWO.

[greenandchic]

I am 33 years old

I am female.

I have RR MS for 4 years

I tried LDN for 1 years long.

I took 4.5 mg's per night

I obtained my LDN from OHSU (Oregon Health Science University) and Lloyd Center Pharmacy, Portland.

If I know it, the filler used was don't know.

I have the following known allergies: Gladlium, latex.

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

My side effects with LDN were none.

[chicadee]

I am a 42 year old female.
I have RR MS, was diagnosed in 2007.
I started LDN 6 days ago.
I take 4.5 mgs every day (in the morning due to severe insomnia issues).
I obtained my LDN from Medicap Pharmacy in Virginia.
I don't know which filer was used.
I have the following known allergies: dust mites, mold, oak, and sulpha antibiotics.
I was also taking the following medicines at the same time: Copaxone, Gabapentin, and Nexium.
My side effects with LDN are: heavy fatigue, some stiffness/ weakness in right side limbs.

[misslux]

I am female

I have PPMS for 5 years

I tried LDN for 3 months (stopped 3 weeks ago for a week, restarted, stopped a week ago)

I took 1.5 for a week/3.0 for a week/4.5 the rest of the time

I obtained my LDN from physiatrist

I have the following known allergies: sulfa meds

I was also taking the following medicines at the time: 4-AP, Tizanadine and Myrbetriq

My side effects with LDN were

- increase in spasticity and spasticity-related pain
- increase in urinary retention and hestitancy
- increase in heat/cold intolerance
- dizziness and unbalanced (more than usual)
- generally unwell (more than usual)

I have only been off of it for a week now but feel a lot better. I am not interested in trying it again.

[Azaeleaprawn]

I am 63

I am female

I have SPMS for ? years (diagnosed 2010)

I have tried LDN for 1 month

I took 1.5mg per 1st and then 3mg per night

I obtained my LDN from PS in BC

The filler is Avicel

I have no known allergies

I take Vasotec and Hydrochlorothiazide

I've noticed an increase in spasticity when I get up in the morning, difficulty sleeping at times (unusual) and experience increased constipation.

[annbbe]

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

I am _33__ years old

I am female.

I have MS for 14 years

I tried LDN for 20 days long

I took 1,5 mg's per night

I obtained my LDN from Switzerland

If I know it, the filler used was sacharine

My doctor was -in ______

I have the following known allergies: -

I was also taking the following medicines at the time: Milvane (anticonception)

My side effects with LDN were awful, enormous weakness

I am still on it, but don't know why, I don't feel anything positive. I am still waiting...

[aliki]

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

I am _31__ years old

I am _female__

I have RR MS for _12__ years

I tried LDN for _3__years) long (if multiple times, provide info on latest attempt)

I took _3_ mg's per night

I obtained my LDN from _America____

I don't know the filler used

My doctor was Dr Lawrence

I do not have allergies: _______

I do not take any other medicines at the time

My side effects with LDN were __problems to get sleep and at least one time at month I have very vivid nightmares and I scream in my sleep so everyone that is in house gets awake