Exacerbations while on LDN treatment

Arron

We would like to record people's experiences who have had exacerbations while on LDN.

Please copy and paste the following into your replies to this thread.

"I had an exacerbation(s) while on LDN treatment for Multiple Sclerosis. My details are as follows:"

I am ___ years old

I am ___ (male/female)

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

My exacerbation(s) while on LDN affected my _____ (body part/function e.g., eyes, legs, cognitive, etc.)

It lasted for ____ (days/weeks/months)

I (had/had not) had this symptom before

When I had this exacerbation(s), I was taking LDN for ___ (days/weeks/months) long

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a ____

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

I took ____ mg's per night

I obtained my LDN from _____

If I know it, the filler used was ______

I have the following known allergies: _______

I was also taking the following medicines at the time: ________ (important!)

I (still do/no longer) take LDN."

Please spread the word about this survey to your other favorite MS 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=336

If we gather enough information, we might be able to demonstrate a pattern to help determine if and when LDN is most useful.... Thank you for your participation! and Thanks to CCmom for prodding us to put this important post together.

elana · Posted: Tue Aug 10, 2004 12:11 pm Post subject:

I am 42 years old

I am female(male/female)

I have SP MS for 9 years

My exacerbation(s) while on LDN affected my LEGS(body part/function e.g., eyes, legs, cognitive, etc.)

It lasted for EVERYDAY (days/weeks/months)

I (had/) had this symptom before

When I had this exacerbation(s), I was taking LDN for 2 WEEKS(days/weeks/months) long

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a 9

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

I took 3.0 mg's per night

I obtained my LDN from SKIP'S

If I know it, the filler used was ______

I have the following known allergies: PENCILLIN

I was also taking the following medicines at the time: 50 mg ZOLOFT (important!)

I (still do/) take LDN."

suzq · Newbie Joined: Jul 02, 2004 Posts: 3

--------------------------------------------------------------------------------

We would like to record people's experiences who have had exacerbations while on LDN.

Please copy and paste the following into your replies to this thread.

"I had an exacerbation(s) while on LDN treatment for Multiple Sclerosis. My details are as follows:"

I am _27__ years old

I am female

I have RR_3__ years

My exacerbation(s) while on LDN affected my __waist down to toes___ (body part/function e.g., eyes, legs, cognitive, etc.)

It lasted for _two weeks so far___ (days/weeks/months)

I had this symptom before

When I had this exacerbation(s), I was taking LDN for _3__ months

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a _7___

I tried LDN for __3 mos_(days/months/years) long (if multiple times, only provide info on latest attempt)

I took 4.5 mg's per night (still take)

I obtained my LDN from __Skip's___

If I know it, the filler used was ___unknown___

I have the following known allergies: __none_____

I was also taking the following medicines at the time: _Copaxone, Atenolol (important!)

I still take LDN."

RevLeonidas · Family Member Joined: Nov 03, 2004 Posts: 34

I have had two exacerbations while on LDN treatment for Multiple Sclerosis. My details are as follows:"

I am 38 years old

I am a guy

I have had RR MS for 8 years

My exacerbations while on LDN affected my eyesight, gave me numbness in one leg, constipation, and fatigue; however, the severity was/is mild.

I've had two, one currently that has lasted about 6 weeks, one earlier this year that lasted about 10 days.

I had these symptoms before

When I had the first exacerbation, I had been taking LDN for three(3) months; this flare-up, 8 1/2 months.

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a 3.

I've tried LDN for 10 months

I take 4.5mg's per night

I obtained LDN from my general practitioner in my former city of residence; and here, I got an LDN prescription from my apprehensive neurologist.

I was also taking the following medicines at the time: none, but I had been on Avonex since my DX two months prior to initiating LDN therapy.

I still take LDN; however, because of side-effects, I'm contemplating quitting LDN and trying Copaxone therapy.

renaudjba · Posted: Sun Mar 20, 2005 12:26 pm Post subject:

Chers amis francophones

je me permets de vous signaler que ce forum distingue (selon moi, à bon escient)

- les effets secondaires constatés lors de la prise de LDN

rassemblés sous le titre : Side effects while on LDN, à la page :

http://www.thisisms.com/modules.php?name=Forums&file=viewtopic&t=297

et

- les aggravations des symptomes de SEP constatées lors de la prise de LDN

rassemblées sous le titre : Exacerbations while on LDN, à la page :

http://www.thisisms.com/modules.php?name=Forums&file=viewtopic&t=336

Portez-vous bien

JBaptiste

renaudjba · Last edited by renaudjba on Thu Feb 18, 2010 2:16 pm; edited 1 time in total

Chers amis francophones,

pour que vous puissiez répondre à l'étude que poursuit le site sur les aggravations survenues sous faible dose de naltrexone (LDN), j'ai traduit le questionnaire en français à votre attention:

We would like to record people's experiences who have had exacerbations while on LDN.
Nous aimerions recueillir l'expérience de ceux qui ont connu une aggravation de leurs symptomes de SEP pendant qu'il prenaient de faibles doses de naltrexone.
_____________________________________________
Please copy and paste the following into your replies to this thread.
Merci de recopier les items suivants pour votre réponse
_____________________________________________
"I had an exacerbation(s) while on LDN treatment for Multiple Sclerosis. My details are as follows:"
J'ai eu une(des) aggravation de mes symptômes alors que j'étais sous faible dose de naltrexone pour ma sclérose en plaques. Les détails sont les suivants :"
_____________________________________________
I am ___ years old
J'ai ___ ans
_____________________________________________
I am ___ (male/female)
He suis de sexe _____ (masculin/féminin)
_____________________________________________
I have RR/SP/PP/PR MS for ___ years
Cela fait ____ ans que j'ai une SEP de type RR/SP/PP/PR
_____________________________________________
My exacerbation(s) while on LDN affected my _____ (body part/function e.g., eyes, legs, cognitive, etc.)
Mon(mes) aggravation(s) sous naltrexone à faible dose ont concerné mon/ma (dire la partie du corps et/ou la fonction concernée exemple: les yeux, les membres inférieurs, la fonction cognitive etc...)
_____________________________________________
It lasted for ____ (days/weeks/months)
Cela a duré ______ (jours/semaines/mois)
_____________________________________________
I (had/had not) had this symptom before
(J'avais déjà / Je n'avais jamais) eu ce symptôme auparavant.
_____________________________________________
When I had this exacerbation(s), I was taking LDN for ___ (days/weeks/months) long
Quand j'ai ressenti cette aggravation, je prenais le naltrexone à faible dose depuis ______ (jours/semaines/mois).
_____________________________________________
On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a ____
Sur une échelle graduée de 1 (presque imperceptible) à 10 (difficulté/douleur extrème), je mettrais la note _____ à cette aggravation.
_____________________________________________
I tried LDN for ___(days/months/years) long (if multiple times, only provide info on latest attempt)
Cela fait _______ (jours/mois/années) que je suis sous naltrexone à faible dose (en cas de discontinuité, donner l'information concernant le dernier essai).
_____________________________________________
I took ____ mg's per night
Je prenais _____ mg tous les soirs.
_____________________________________________
I obtained my LDN from _____
Le produit provient de _______
_____________________________________________
If I know it, the filler used was ______
(Si vous le connaissez) l'excipient est ________
_____________________________________________
I have the following known allergies: _______
Je suis allergique connu à _________
_____________________________________________
I was also taking the following medicines at the time: ________ (important!)
En même temps que le naltrexone à faible dose, je prenais les médicaments suivants (!important).
_____________________________________________
I (still do/no longer) take LDN.
(Je continue/je ne continue pas) à prendre naltrexone à faible dose.
_____________________________________________
Please spread the word about this survey to your other favorite MS 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=336

Merci de diffuser cette étude à vos site favoris sur la sclérose en plaques, afin que nous rassemblions un échantillon de taille suffisante.
L'adresse à laquelle les personnes concernées pourront envoyer leurs réponses est :
http://www.thisisms.com/modules.php?name=Forums&file=viewtopic&t=336
_____________________________________________
If we gather enough information, we might be able to demonstrate a pattern to help determine if and when LDN is most useful.... Thank you for your participation! and Thanks to CCmom for prodding us to put this important post together

Si nous rassemblons assez d'informations, nous pourrons être en mesure d'élaborer un schéma aidant à préciser si et quand l'usage de la naltrexone à faible dose s'avère le plus profitable. Nous vous remercions de votre participation! et merci aussi à CCmom pour nous avoir incités à mettre ensemble ce questionnaire en ligne.

______________________________________________

Portez vous bien
Jean Baptiste

dizzee · Posted: Tue Aug 09, 2005 10:13 am Post subject: prescription increased

"I had an exacerbation(s) while on LDN treatment for Multiple Sclerosis. My details are as follows:"

I am 31 years old

I am ___ (female)

I have RR/MS for __11_ years

My exacerbation(s) while on LDN affected myleft side of my face and tongue

It 's lasted for ___4 weeks so far

I had not) had this symptom before

When I had this exacerbation(s), I was taking LDN for _5 months

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a 3

I tried LDN for (see above) (if multiple times, only provide info on latest attempt)

I took ___3_ mg's per night

I obtained my LDN from skip's

If I know it, the filler used was ______

I have the following known allergies: wasps, intolerances: dairy, yeast, gluten (apparently)

I was also taking the following medicines at the time: none________ (important!)

I (still do take LDN." @ 4.5mg now

my balance seems better the way it first improved in February when I started taking LDN but left side of tongue still feels like I burnt it and left side of face still numb

mrhodes40 · Posted: Wed Aug 10, 2005 6:28 pm Post subject:

I am 44 years old

I've been on LDN for 1 year

I am SPMS

I continue to slowly lose function in my right leg. I use a cane and did not when I started LDN

I take 4.5 mg per night

I get it from SKips

I still take it - it improves my sleep and my sense of wellbeing. It is worth it just for this for me

Mary · Family Member Joined: Feb 09, 2005 Posts: 63

"I had an exacerbation(s) while on LDN treatment for Multiple Sclerosis. My details are as follows:"

I am 40 years old

I am female

I have RR MS for 5 years

My exacerbation(s) while on LDN affected my _eyes (double vision)

It lasted for 1 week (very bad), 2 weeks lessening after that

I had this symptom before

When I had this exacerbation(s), I was taking LDN for 4 years

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a 10 in the first week and then down the scale over the next two weeks

I tried LDN for 4 years

I took 4.5 mg's per night

I obtained my LDN from Smith's

If I know it, the filler used was ______

I have the following known allergies: none

I was also taking the following medicines at the time: none

I still do take LDN."

jenf · Posted: Tue Feb 16, 2010 10:03 am Post subject:

Please copy and paste the following into your replies to this thread.

I had an exacerbation(s) while on LDN treatment for Multiple Sclerosis. My details are as follows:

I am 41 years old.

I am female.

I have RRMS for 1 year.

My exacerbation(s) while on LDN affected my feet (primarily), face and torso (occasionally). Numbness in both feet for 2 months, progressing to more severe Transverse Myelitis (constant pulsing sensation) over the last 3 days. The sensations are so disruptive, they're affecting sleep.

It's lasted for 2 months.

I had not had this symptom before.

When I had this exacerbation(s), I was taking LDN for 6 months.

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a 9.

I tried LDN for: continual.

I took 4.5 mg's per night.

I obtained my LDN from Fallon Wellness Pharmacy, Latham, NY

If I know it, the filler used was ______.

I have the following known allergies: N/A.

I was also taking the following medicines at the time: N/A.
(important!)

I still do take LDN.

[/u]
_________________
Jen

RRMS - dx 06/09
LDN- 4.5mg 06/09

Remember, today is the tomorrow you worried about yesterday..

goonasi · Newbie Joined: Jan 19, 2010 Posts: 7 Location: London, UK

"I had an exacerbation(s) while on LDN treatment for Multiple Sclerosis. My details are as follows:"

I am 39 years old

I am male

I have RR MS for 8 years (diagnosed for 4)

My exacerbation(s) while on LDN affected My right leg being completly rigid/stiff unable to walk, (when I say walk I mean not able to walk the furniture). Numbness in both feet, legs and finger tips, Half my face numb from top of my lip to just above my forehead on one side (left).

It lasted for 3 months, eventually gave up and resorted to oral steroids

I have had this symptom before but much milder

When I had this exacerbation(s), I was taking LDN for 3months long untill giving up and took steroids - fixed the problem within 4 weeks. I was advised to stick with LDN and battle through

On a scale of 1 (almost unnoticeable) to 10 (extreme pain/difficulty) , I would rate this exacerbation a 10 (could not work being self employed)

I have been on LDN for 2 years

I took 3 mg's per night

I obtained my LDN from Dickson's, Glasgow, UK. via Doctors script

If I know it, the filler used was unknown

I have the following known allergies: Childrens TV programmes

I was also taking the following medicines at the time: Baclofen (important!) and now trying various natural suppliments to assist LDN

I still do take LDN.