That’s wonderful! I hope you have good luck with it. I am really enjoying feeling so much better.

You know what, Kelly? . . . allergies are another thing that actually cause symptoms for me, but I only made that connection this summer. When I had the neurological pinpoint "itchies" during the heat, and when I had the burning in my legs from changing my laundry detergent, I just thought it was break-through symptoms. It wasn't at all like an "attack" because the feelings were intermittent with sometimes several hours or days between them.

HiCY Chris mentioned antihistimines (ie. Benadryl, he uses one that starts with a "Z" though) for the itchies, and I couldn't believe it worked. I did some research and found out antihistimines sometimes work for neurological symptoms too. I have since tried Benadryl for the burning in my legs (feels like a blow-torch on them), and I have now washed everything with good-old Tide, and I am barely ever getting the burning any more. When I do though, Benadryl works for me! Here's a thread about that:

http://neurotalk.psychcentral.com/thread53798.html

So, it may be that you have to find the allergy med that works for you.

If it is an underlying sinus problem (for whatever reason), it's very possible you have an infection, and sinus infections can be extremely stubborn and deep. I went through that for about 15 yrs, until they did an operation where they opened me up and discovered I was riddled with polyps in my sinus cavities of my cheeks. This was mostly the pre-MS-dx days, but I lived on antibiotics for most of that 15 yrs (on and off), before they eventually noticed one polyp dangling in the back of my throat. That's what prompted the surgery... I haven't had a sinus problem or infection in over 10 yrs now.

When I originally went up to 4.5mg, and also when the weather changes every year, the spasticity pain in my legs (and often arms) gets quite bad. That was one symptom that was very debilitating for me, on a daily and long-term basis, pre-LDN. It feels like my tendons were being pulled to the max. When that starts acting up now, usually at the end of Sept/beginning of Oct (depending on the weather), I have to go back down on the LDN to about 3.75 mg. I am always back up, with just one increase in dosage to 4.5mg, within about 3 weeks though, and the problem is gone when I do.

Cherie

Marion, is it possible you are allergic to the filler Skip is using. I have lots of allergies, even to fillers, so that's why I use the pure Naltrexone powder compounded in distilled water.

It may be something else entirely too (the season; mold, etc.), but if it doesn't clear up, I'd start testing my options.

Cherie

:ROTFLMAO: That's funny, PunkD!!

I'm happy you are getting a chance to give it a go!! :Dancing-Chilli:

So, unless you have been following this thread all along, you are going to have to go back to about page 5 to find out what side-effects MAY occur, and what NOT to be concerned about. (Well, hopefully not back to page 5, but probably when Twinkletoes, Kelly, and Frank started...).

GOOD LUCK!!! I hope it is your ticket!

BTW, I am also a person that doesn't do well with meds, and I have done very well with this one. :)

Cherie

Hey Twinkletoes . . . I hope your "absence" from this thread means you are doing well and having lots of fun away from here!!

;)

Awwww, thanks for missing me, Cherie!

I've been busy and doing some traveling. Writing this from sunny Phoenix. Had to come visit the grandkids. ;)

The vertigo is still with me, but Skip's Pharmacy said it wasn't likely the LDN. Guess it was just a coinkidink.



Haha Drew! Whatever it takes -- glad you got the prescription!

hello everyone still doing well on the LDN, some days better, but am doing still as good and better than I was when on the other PILLS,

could the hives be a new soap or laundry soap or fabric softner?, just a thought we have to be careful here one kid and wife have troubles,

glad you got your script, and glad its working marion,

howdyCherie, Twink, Kelly and our missed buddy Sally, hope you all have a great weekend

<< BIG bright smile >>
 

That is so encouraging to hear, Marion. I've experienced the same thing with my sx and I know how you feel...you don't want to say anything too soon for fear of jinxing things! But the difference I feel is just like night and day. It's so wonderful to have my energy back. Not to have to worry that if I miss my nap I might conk out during dinner!! It's just so nice to feel like myself again. I was beginning to wonder if I ever would.

I'm so happy you're have a positive experience with it. :)

Hi Kelly, Marion, and Frank. :Wave-Hello:

I too was afraid to speak up at first, because I was waiting for the other shoe to drop. I got over that after about 6 months . . . :D

And, there have been times that were slightly worse because of excess stress, infections, or having to move 13 TONS of furniture.

After a while though, any time things were a little more difficult for me, I just remembered back to what it was like before I started . . . and I took stock on where I am "now"; 1, 2, 3 yrs down the track. I am STILL at exactly the same EDSS I was at 9 months after starting on LDN (where I had improved by one point over the prior two yrs), and I struggle much less with the symptoms then I did back then too.

It's not a "cure", or a perfect drug . . . but I am very thankful (in EVERY way!) that I got on it . . . at least until something better comes along.

Cherie

ahh more good news for me! we have a compounding place in my area.. and they do use the pure powder form of naltrexone no crushed 50mg pills.. they said they do have it quality tested.. and have quite a few ppl that they fill for.. so i am quite happy..

i am not a big fan of getting my meds through the mail.. the only issue is the filler is lactose.. and that can go either way for me... i wouldn't say i am lactose intolerant.. i can eat cheese and drink milk.. but i can not by any means have ice cream or its me in the bathroom for a few hours with cramps and well ya know... they did say they could use another filler... but i said go ahead with the lactose this time since i know what it does to me..
because with my luck they would find a filler i am allergic to..:rolleyes:

anyway that is my sad little update.. so until i have the pills in my hand (they said Tuesday) i really wont have any updates that are worth mentioning..

Weighty LDN issue
 

Has anybody else on LDN lost weight? I’ve managed to drop five pounds over the month I’ve been on it. I find it much easier to pass up extra food lately. You?

I've been on it for 3 months and have lost a couple of pounds. I'm finding that it is taking me longer than most here to see the results of symptom relief, etc. from LDN. I am seeing results, slowly though. Weight loss is a good thing for me :)

Tree,

Your are right. It makes sense to me that peoples’ bodies react to this drug differently. Don’t forget, it’s not the LDN that brings change. It is your body’s very own endorphins providing for its own custom made improvement. As for the side effects, what person wouldn’t want thicker hair, stronger nails, and a more streamlined physique? And all this is for around a dollar a day?

Marion, I lost 30 lbs, but that wasn't until I was able to get off antidepressants a year after being on LDN. I think the use of them (A/D's) caused me to gain weight over a period of about 2 yrs, and the ability to ditch them caused me to lose it. The weight just "fell off" though, with no effort what-so-ever on my part. :)

Tree, I've heard it said the probability of symptom relief might be dependant on how long we've had that symptom. I don't know if I believe that because I managed to get rid of the claw hand that I had had for 5 yrs. Most of my other symptoms though, were only about 2 yrs old . . . but most had been consistent and very debilitating throughout that time.

Some changes are very insidious though. I've heard people say that one day, after several months on LDN, they suddenly realized that hadn't used their cane for short distances in a long time. I think it's kinda' like we don't always notice as things slowly progress (with the disease process), and we don't always notice as things slowly improve (from LDN) either.

Not everyone experiences substantial symptom improvement either, for whatever reasons. :confused: I looked at symptom improvement as a "bonus" because I was taking LDN to HOPEFULLY affect my disease progression and relapse rates.

Cherie

Me! I have! It's been a nice side effect. I'm down 15 pounds since starting it - but I was weaning off the AD's and Neurontin at the same time and I believe it was those two that were the culprits. Still though, I don't have too much of an appetite. :)

I know everyone is different. I also was on IVSM for 10 days in 10/2007 and then 3 days once a month from 12/2007 through 04/2008. Started LDN in 06/2008. I'm wondering if that has any effect on how LDN is working.

I appreciate your encouragement. I enjoy reading how others are doing well.

Marion and Herekitty.....way to go with weight loss side effect :cool:

hello everyone

well I have decided to back it down to 1.5mg, so far so good, i noticed about same time I went to 3mg I became very sluggish, wake up go back to sleep no energy, well I want to see what happens back on 1.5, I was doing better at that dose. so far am waking up early and not going back to sleep even got some stuff done and made sure I didnt overdo itsee how it is by mon weds? I hope all are doing well

Sally I miss you:hug:

Nope, no weight loss for me. But I am currently on an AD, so am optimistic I'll have a similar experience to Cherie's. I really need to lose weight! *insert chubby icon here*

I just increased my dose to 4.5 mg.

And Frank, I know what you mean about waking up feeling sluggish.

Yesterday I was ready to throw in the towel, even though I promised myself I'd give it a good effort. I've only been on LDN for 7 weeks, and that really isn't long enough to give it a chance.

To start with, my symptoms weren't as severe as many of you (just diagnosed 1.5 years ago), so maybe that's why I've noticed more unpleasant side effects of the LDN (b/c I had less to celebrate).

The one positive thing that I've really noticed (most days) is improved stamina. Even if I don't wake up feeling very energetic, as long as I get moving I can go all day.

For instance, today I got up and took a mega-dose of Ibuprofen b/c I was achy. I was able to get ready and get on a plane at PHX airport, land in SLC and drive 2+ hours home. I still had energy when I arrived and actually unpacked my bags (something I almost always procrastinate due to lethargy). It's past 10:30 p.m. now and I am tired, but not dragging.

The clincher will be if I am able to make it to church in the morning by 9:00. If I can just get beyond the body aches, I'll be okay. The body aches and sluggishness are what prompted me to give up on Copaxone after 9.5 months.

I really do not want to try any of the other CRABs or Tysabri. I'm hanging all my hopes on LDN.

Glad you all are experiencing positive effects. But I wanted to be honest about my experience because, for those looking into using LDN, its good to weigh the pros and cons before making a decision.

Here's my understanding of LDN....and please correct me if I'm wrong because Lord knows I've been wrong before!!

All the beneficial side effects we're having are all pluses....some may have them and some may not. I have days where I feel great, some I feel just so so and some I don't want to get out of bed. As long as LDN stops or slows the progression of my MS I'm satisfied whether or not I have the nice side effects. Only my MRI will tell me if this is happening or not. Now, having said that, I can say without a doubt that I've felt better while on LDN. I just don't expect that I'll feel terrific every day - just as I didn't feel terrific every day before I had MS.

But I can always look back and see a common denominator when I feel "off"....like right now I'm lightheaded and dizzy but....I have a sinus infection and I'm taking antibiotics.

I'm going to stick it out for at least a year. I feel like I owe it to myself to give it that much time...otherwise I don't feel like I can make a good decision as to whether it's working for me.

So far so good here.....I hope it stays this way. :)

Twink, you're a busy lady....I'd be fatigued if I kept your schedule even if I didn't have MS!! :) I hope you feel better soon! :hug:

Frank, you, too. You're busy all the time - and you don't get much sleep....which can make anyone (MS or not) feel sluggish. I know....I'm not a good sleeper either but sometimes I just have to make myself rest even if I don't want to. There's always tomorrow to do the chores left over from today. :p

Marion I dropped twenty four in last few months but was also under orders to cut fat out completely something about blood pressure could fuel a charging elephant and my cholesterol well lets just say I can no longer put butter on my butter:hissyfit:

as for sleep well, its overrated, will come a time when I will :Zzzz:, I never have worried about it, I have always been late to bed early to rise. i understand sleep would help eliminate some of my bad days, so what, i enjoy staying up late watching science stuff or read a good book, chatting or playing a fun game, like I said its overrated in my book, there's too much life, to be had, this all being said I was up bright and early again:Hum: and was up late and am not sluggish:yahoo: like I said i will wait till weds to see what gives with going down to 1.5

something I have noticed about a lot of meds since my little guys first seizure, that was his 5 yr old bday gift, all those meds and worries fears stopping one and trying to have faith the next one will it work real quick so his seizing ceased, I see a lot of familiar things with the MS meds its a crapshoot, there's no two ways around this, what works for me, might make you worse, I am sure this applies to other situations and illnesses, sure seems to be prevalent with MSers

I agree Kelly about the side effects from this are pttttfff nothing compared to the 5 pills I stopped, and it has a better chance of slowly then anything out there i like 3/5 type of odds better than 1/3:Ponder:

and from my view it may seem rash, hope not but regardless of what I take seems like something is gonna happen either the MS or meds reactions, yeah my ms SX bite, but you know what I will take those over the effects of those 5 pills, i may regret this, down the road, I don't think I will though, as long as I have friends stay positive try and never give up. and at least keep abreast of medical breakthroughs ideas and possibilities, I have as good chance as someone who takes everything out there, sometimes i think positive mental attitude is the best med out there,

ok wowsers lol I type lots hmm time for a cup of coffee, see this is two days like this , fingers are crossed, hope your Sunday if a funday


peace

I know.....I stopped taking several and think that in itself made me feel better. No doubt, the stuff that's supposed to help us feel better sometimes ends up making us feel worse. :Sigh:

I know what you mean about sleep, Frank.....sometimes even though I know I need it if I'm awake it seems pointless to just lay there hoping to go back to sleep eventually. I'm too antsy for that! Since I know I can always take a nap or at lest rest during the day if I need to I don't stress about when I get my sleep too much. If I had an 8-5 job I'd be pullin' my hair out! :eek:

Well, all I can say is, I sure am glad I had my LDN and Prozac, through this past week.:eek: I don't think I would have made it, without both..:p

Nice to see most of you doing so well. (((((((Frank)))))))..hang in there.:hug: You too..(((((((Twink))))))) :hug:

:grouphug:

nice to see your pretty smile on this post again Sal, glad you are ok:hug:

Yaaaaaay!!

We've got our Sally back!!!

I have a 1 PM phone consult appointment with the doc today....I've been on LDN since 8/25 and the 3.0 dosage since 9/01. I'm hoping he tells me it's okay to bump up to the 4.5 mg. I am nursing a sinus infection and on an antibiotic so he might tell me to wait until the medication is finished.

I like the 1.5 mg. tablets because it gives me the option of taking 3.0 or 4.5 easily.

I need to write my questions down or I'll surely forget them! :o

well its tues and every day since i went back down to 1.5 i ahve been p early no jet lag, more energy, me thinks .5 is gonna be my dose for some time

everyone I hope your week is going well so far

cherie are you ok? how you been hope you are doing well:hug:

I'm surprised that 1.5mg helps you at all, but LDN amazes me anyway, so, great, Frank, I hope this is your dose. you can always try to go up, later.

I started at 3 and didn't go up to 4.5mg for a couple of years.

:hug:

I did not realize that you could take an interferon with LDN. I did know that copaxone and LDN were ok.

It's not recommended, but, has been done, by some, with success???

Wow....I had no idea you could take the two together. I've always been told no DMD's except Copaxone which is not an interferon. :confused:

My phone consultation went well. He told me to up my dose to 4.5 mg as soon as I finish my antibiotics. So...next week I'll give it a try.

I started my 3.5 mg dose last night, up from the 3. 0 I had been doing for the previous month. I’ll be on this dosage for two months. I have been feeling very well, and I am enjoying the first major improvement of my symptoms in decades. Is it the LDN? Is it the placebo effect? Is it the Prednisone taper? Only time will tell, I guess. In the meantime, I am just going to enjoy.

Yes, Tante, I know someone who took Beta and LDN for a couple of years and then quit both!! I don't know exactly why and haven't heard, if she went back on either. She loved the LDN, for that time frame, though..:)

Hi Tante, and welcome to the thread! :)

I posted very early on in this thread that I knew of others that were taking the interferons and LDN (didn't know about you, but "others"), and have seemed to be successful with the combination:

I know that Dr B didn't recommend it and that had something to do with the way in which the interferons tend to "modulate" through suppression, vs. Copaxone "modulating" through enhancement. I don't know how he arrived at his conclusion, but since he was the guy that discovered the use of LDN for MS, I went along with his theory/recommendation.

I do know they were trialing LDN users on interferon patients . . . but I haven't caught up with those results yet.

I'm glad to hear LDN is working out well for you though, and that you get to hold onto your 'double insurance'. ;)

Cherie

"...the first major improvement of my symptoms in decades."
",..I am just going to enjoy."

Almost miraculous, isn't it?

:)

herekitty1960
 

I had wondered how long you had been on LDN...turns out not long at all. Was the discussion here helpful to you in deciding to try a higher dose, and had spasticity been much of a problem for you in the past?

I can go search for these answers if that would be easier for you. I guess it is tacky of me to not try it first, but asking you now might get more information, or a better perspective, now that you've been on it for a while.

Thanks!

Tante,

Almost miraculous is right. If this improvement lasts I will be astounded. It isn’t like I don’t have MS, or anything like that. But the implications for the quality of my life are huge.