Side Effects while on LDN...

Arron · Last edited by Arron on Mon Aug 09, 2004 3:21 pm; edited 3 times in total

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 ___ 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 ____ mg's per night

I obtained my LDN from _____

If I know it, the filler used was ______

My doctor was _______ in ______

I have the following known allergies: _______

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

My side effects with LDN were ______"

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 Smile

crispy · Posted: Sun Jul 18, 2004 2:15 pm Post subject:

"LDN did not work for me, this is my information:

I am 52 years old

I am male

I have had PPMS for 10 years

I tried LDN for 10 days on this occasion

I took 3mg's per night at 2130

I obtained my LDN from Martingdales

The filler used was calcium carbonate

My doctor was anon in Crediton, Devon UK

I have the following known allergies NONE

My experience with LDN was:
Benefits - Night visits to loo reduced from 5 to 1
Side-effects - Nausea; weakness; multiple headaches; generally unwell

CCmom · Family Elder Joined: Apr 26, 2004 Posts: 118

Hi, Aaron. I think this is a great idea, but there has to be some way to get the answers you are wanting. I believe what you are asking here is if anyone has had any true exacerbations while using LDN, right? I would be more than happy to post the link on other message boards, but I know the answers would be much like the above answer, and only mention side effects from the LDN.

Crispy, you might be interested to know that there are a couple of people on another message board that I use that have listed pretty much the same side effects. One of these people found out that her stomach upset was due to the filler used and not the naltrexone. Did you try other fillers /pharmacies???

I am hard pressed to find anyone who has had a true exacerbation while taking LDN, and I have searched far and wide. Some with PPMS and SPMS have had what they are referring to as "pseudo exacerbations", which is explained as a revisit of old symptoms, however, they do not claim these to be true exacerbations. I must admit I am a bit confused by that.

My son continues to do really well on LDN, and we are very pleased with the results. I wish you could all see pics of before (on Rebif) and after (on LDN). He isn't even recognizable as the same child. It's amazing.

Anyway, my mind wanders. Back to what I was trying to say...Maybe we could post a thread for side effects AND a thread for exacerbations while on LDN??? Hopefully, there won't be many posts to either, but I think it would be interesting, and I would certainly spread the links to other boards for LDN users. Let me know what you think!

Take care, and have a great weekend!

Kim
_________________
Kim R.

Janice · Getting to Know You... Joined: Aug 13, 2004 Posts: 10

Hi, hope this helps
I had side effects while on LDN treatment for Multiple Sclerosis.

I am 54 years old

I am female

I have RR/ MS for dx 3 years , but probably had it since 1979

I tried LDN for 3 months long

I took 3 mg's per night

I obtained my LDN from Park Irmet in NYC, started 9/04
the filler used was calcium carbonate
My doctor was Dr. Bihari
I have the following known allergies: penicillin
I was also taking the following medicines at the time:
paxil, fosamax,

My side effects with LDN were headaches, insomnia, vivid nightmares
I've had intermittent weakness in my right leg (which I had before), no new symptoms

iluvbunnies · Newbie Joined: Jan 05, 2005 Posts: 4

I read on another group not to use the calcium carbonate as a filler with naltrexone b/c it causes the LDN to slow release which is not a good thing. I believe it said it becomes compacted in the capsule which causes this. Avicel, lactose and acidolphilus are known to be good fast release fillers.

Rhonda

Janice · Getting to Know You... Joined: Aug 13, 2004 Posts: 10

Hi Rhonda, I have heard the same things about calcium carbonate, so I made sure to address that point with Dr. B. He said that there is absolutely no problem with the filler. Perhaps other pharmacies (other than Park Irmet that he uses) prepares the capsules differently, which would account for the discrepancy. Anyway, I am now feeling well well, sleeping better, no more headaches, etc. So for me, I apparently needed 3 months to get used to LDN. Regards, Janice

iluvbunnies · Newbie Joined: Jan 05, 2005 Posts: 4

Hey Janice,

I have just started the Revia from medsmex.com and been 19 nights so far. Yes, vivid dreams are part of taking it in the beginning. Some keep them and some will stop. I have vivid dreams anyhow lots of times. I have woke up with the headache which I hope will stop in the future. It goes away as the day goes by. So far I haven't had any help with the fatigue. I'm hoping I get some energy as others say they get. I posted under introductions some info on my story if you want to read it there. I'm still reading everything I can and the Lyme really makes me wonder how many are misdiganosed. I only had the test my neuro did which I've read isn't accurate. I want to try a compounded LDN one day if I can get a script which I haven't tried yet. Yes, it most likely depends on the compounder when it comes to using calcium carbonate as a filler but I read enough to not want that filler. Irmat in NY is a good compounder from what I have read.

Rhonda

renaudjba · Getting to Know You... Joined: Mar 17, 2005 Posts: 20

Chers amis francophones

je me permets de vous signaler que ce forum distingue (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 · Getting to Know You... Joined: Mar 17, 2005 Posts: 20

Chers amis francophones,

a l'attention de ceux qui ne parlent pas l'anglais, j'ai traduit le questionnaire du site qui permet de recueillir sous une forme exploitable statistiquement les effets secondaires négatifs ressentis par les patients qui prennent le naltrexone à faibles posologies (LDN). Voici ce questionnaire :
_________________________________________

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.

Rassemblons les informations provenant des gens qui ont essayé les faibles posologies de naltrexone, et qui ont éprouvé des effets secondaires négatifs pour savoir si on peut y retrouver des communautés.
_________________________________________

Please copy and paste the following into your posts
Vous voudrez bien recopier les items qui suivent dans vos courriers :
_________________________________________
"I had side effects while on LDN treatment for Multiple Sclerosis.
"J'ai ressenti des effets secondaires pendant que je prenais de faibles posologies de naltrexone pour ma sclérose en plaques"
_________________________________________
I am ___ years old
J'ai ___ ans
_________________________________________
I am ___ (male/female)
je suis de sexe ____ (masculin/féminin)
_________________________________________
I have RR/SP/PP/PR MS for ___ years
J'ai une SEP RR/SP/PP/PR depuis ___ans
_________________________________________
I tried LDN for ___(days/months/years) long (if multiple times, provide info on latest attempt)
Cela fait _____ (jours, mois, années) que je prends de faibles posologies de naltrexone (en cas de prise discontinue, donnez les information sur votre dernière tentative)
_________________________________________
I took ____ mg's per night
Je prenais _____ mg par nuit
_________________________________________
I obtained my LDN from _____
C'est ____ qui m'a fourni le produit
_________________________________________
If I know it, the filler used was ______
(Si je le connais,) l'excipient était _____
_________________________________________
My doctor was _______ in ______
Le médecin prescripteur était le Dr. _____ à ________
_________________________________________
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 natrexone à faible posologie, je prenais les médicaments suivants : ________ (!chapitre important)
_________________________________________
My side effects with LDN were ______"
Les effets secondaires que j'ai éprouvés sous naltrexone à faible posologie ont été:
_________________________________________
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

Merci de diffuser cette étude aux autres sites de telle façon que nous disposions du meilleur échantillon possible. L'URL à laquelle les gens devront adresser leur contribution est : 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

Si nous arrivons à rassembler assez d'informations, peut-être pourrons-nous dégager des grandes lignes. Merci de votre participation et merci à MSCareGiver et CCmom de nous avoir incités à mettre ce questionnaire en ligne de concert avec eux.
_________________________________________
Je vous remercie du soin que vous apporterez à répondre aux question, et à diffuser ce questionnaire.

Portez vous bien

Jean Baptiste

ramairdad · Posted: Wed Apr 27, 2005 12:07 pm Post subject: going to start LDN

I just came back from my family physician yesterday and he prescribed LDN for me. I'm starting with a 2.5 mg dose. I'll let you know how I do on it. It will take a while to get it due to mail order.

watergypsy · Posted: Wed Apr 27, 2005 3:17 pm Post subject:

I am a female in my 50’s

I have had PP MS for nearly 2 years

I have been taking LDN for 6 weeks

I took 3 mg's per night for 3 weeks, then 2 mg for 1 week, and am now taking 2mg & 3mg on alternate nights

I obtained my LDN from the UK

The filler used is calcium carbonate

I have no known allergies

I use no medication but am taking mineral and vitamin supplements including Gamma Amino Butyric Acid

My only side effect with LDN is a slight headache on first waking. This lasts less than five minutes otherwise I can report only benefits.

ramairdad · Posted: Sun Jun 12, 2005 10:37 am Post subject: LDN and side effects

I've beem on LDN for about 2 and a half weeks. 2.5 mg I don't notice any improvements in disabilities, but do notice I'm not as tired and worn out at night, sleep better( have had some vivid dreams, but does'nt bother me that much) bladder seems to have better control (less urgent), seems like I have better outlook on life in general. I think I'll stay on it for a while. My new doctor (that I haven't seen yet) said to keep taking my beta seron injections with the LDN as the LDN isn't proven yet. I'm going to ask him about stopping the injections when I see him in July. I think the LDN is working. I also think it will work better when I'm off the injections. Just my my thoughts, not a proven fact.

mez · Newbie Joined: Apr 23, 2005 Posts: 7 Location: Melbourne

I thought it was important to be completely OFF inteferons when taking LDN as they counteract each other. Copaxone it OK, though...anyone with better info?

CureOrBust · Posted: Mon Aug 29, 2005 6:19 am Post subject:

It appears to be working for me.

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

I am _35__ years old

I am __male_ (male/female)

I have RR MS for _9__ years

I tried LDN for _10__(days) long

I took __4.5__ mg's per night

I obtained my LDN from __a reputable pharmacy already dispensing LDN___

If I know it, the filler used was __avicecl____

My doctor was _______ in ______

I have the following known allergies: __none, except pain..._____

I was also taking the following medicines at the time: ___statin, just started on antibiotics (3 days)_____ (important!)

My side effects with LDN were __stiffness, causing difficulty when walking____

rick_w · Newbie Joined: Dec 25, 2005 Posts: 2

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

I am 38 years old

I am male (male/female)

I have RR MS for 1 1/2 years

I tried LDN for 4days_(days/months/years) long (if multiple times, provide info on latest attempt)

I took 3 mg's per night

I obtained my LDN from pharmacist

If I know it, the filler used was ___Don't know___

My doctor was _______ in ______

I have the following known allergies: ___dust, mold____

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

My side effects with LDN were __numbness and stiffness in both feet and in both legs. From the bottom of both feet up to my groin. My feet are so sore I have troubling walking. I took this drug for 4 nights and after the first night I noticed these symtons, it got worse each and every night. I became very scared and stopped the drug after the 4th night. Symtons still increased. I have been off it now for two weeks and symtons have not gone away. These are symptons that I did not have before I started this drug. I did have a mild heavyness in my right leg before I took the drug. My advice to anyone is not to take this drug, it was a horror story for me.

____"