low dose naltrexone
Having gone secondary progressive four or so years ago and not having a lot of choices with medication and also getting to the point where transferring from toilet to shower (about 2 metres)was starting to become nigh impossible, I was desperate.
I asked Neuro and then got script for LDN. Have been taking it for four days, slowly increasing the dose (now at 3mg). I guess I wasn't expecting miracles but had read of others who experienced lessening of symptoms almost immediately, I've had no change. In fact I'm a little worse (mobility,fatigue wise). I've had no side-effects (nightmares etc.)though mysteriously I've developed a couple of mouth-ulcers (don't often get).
Can anyone on LDN remember their early days and their experience with LDN that may be helpful, enlightening to me please? 
Steve
Disclaimer please read!
Disclaimer please read!
Please Note: Any advice given on OzMS must not be taken as medical advice, it's merely advice given by members from their own experiences of living with Multiple Sclerosis. Always check with your GP or Neurologist or other medical professionals, it's the smart thing to do and only logical! If you have something to contribute please do so, everybody has something to offer.
Comments
LDN - Early Days
Hi Steve, I have been on LDN for about 1.5 years (PPMS) I dont know if its helping, my first week was brilliant, all symptoms went away totally. I could skip down the hallway (haven't been able to run for 2 years) which was brilliant. Its not scientific, but it think it has helped 'a bit'. I am unsure where I would be without LDN, I didn't have nightmares, I started on 4.5mg from day 1 as not a lot was known when I started. Everyone seems to go 1.5, 3, 4.5mg now.
My symptoms have got steadily and slowly worse over the past 12 months, bad fatigue, bad vertigo, I walk with a cane about 20% of the time. One thing I will say is it does seem to make me feel better, haven't really been struck with depression, and still able to work 50 hours per week so its all good there. I might have to learn to write with my other hand as left (southpaw) feels very stiff. ABC's again yah!
More than happy to help where I can, sorry I cant provide more data to be of assistance. This is just my experience, since there isnt anything else for PPMS i'm sticking with LDN, its cheap and seems like no side effects, and dunno but it might just help a bit.
Cheers
Brendan
Brendan
thanks Brendan
Thanks Brendan, sounds like a mixed bag of blessings. Isn't it strange, you'd think we were all made of the same stuff and that therefore we should all respond to therapies in a stable, controlled, predictable fashion. Yeah right! This is MS and the only thing predictable is it's unpredictability.
Thanks Brendan for your honest appraisal and quandry re: LDN it seems par for the course. I did read somewhere that when LDN appears to lose effectiveness that it's good to miss a couple of doses occassionally to kick everything back into gear again, but who knows? All the best. Steve
"...(I) will run and not be weary, walk and not be faint." Isaiah 40:28
Low Dose naltrexone
Hi guys,
Not taking yet - so far lifestyle changes have kept me OK since last major attack (1997 to 2001) - but definitely on my list if I develope the family maladies which include cancer.
From what I have read, the best dose for most MSers is 1.5mg taken just before bedtime! Although up to 4.5mg is prescribed, the lower dose is usually more effective.
Also - on anecdotal evidence - if you are using refined (degraded) vegetable oils, including margarine, it may interfere with the effectiveness.
So possibly scrap those (use organic butter and the virgin oils- olive, macadamia and coconut) - and dropping the dose back to 1.5mg may prove more beneficial.
Oh- and if you do so, please post on how that worked for you.
Random Acts of Kindness and Senseless Things of beauty
feel like I'm plugged-in
I took my medication before bed and headed off for some shut-eye but having a bit of trouble slipping off to sleep I was just laying there counting sheep when something wonderful happened; I became aware that the bottom part of my body was actually "plugged-in" to the top half.
I found I could actually sense where my legs were (their position in relation to my body), could move my legs and feet more than I could before, my legs and feet were warm and I had a "sort of warm, buzzing feeling" over all my body. I felt vital and strong and wanted to get out of bed and walk around. After getting up this morning reality as well as my foot hit the floor.
I've been in a wheelchair for two years, before I start running around the block I will have to seriously work at getting back some muscle tone. In practical terms, though I feel more "connected", in control and vital, I still cannot walk but shuffle.
I'll try not to get too excited (note Brendan's post) but this experience is the first good news in four years. Thanks dizzylizzy for your comments. I steer clear of those nasty oils but I will continue my dosage at 3mg or higher after last night. Will keep you all posted. Might blog something after a month or two when I know what's really happening to me. Steve
"...(I) will run and not be weary, walk and not be faint." Isaiah 40:28
Good news Steve, hope it
Good news Steve, hope it keeps improving
Life is like a box of chocolates.... never know what your going to get
Great to hear Steve.
Hi Steve,
That's fantastic news, I can feel your happiness! Am going to look in to this LDN for myself now.
All the best to You!
Kev
Slainte!
(Good company, good conversation, good health good Friends!)
LDN
Hi
I have been on IV Naltroxone... is that similar to the oral? I have an infusion every three months and it seems to be helping. So pleased to read of the good LND results. x
Naltroxone/Naltrexone
Hi jodi, I'm not really clued up on Naltroxone but will try to find out what it is. Naltrexone is Naltrexone Hydrochloride. So no, they probably aren't the same thing.
I'm back again after doing a "Google". I can't find Naltroxone at all except where some people have spelt Naltrexone wrong..........sorry but came up with squat-diddly.
Have a good day. Steve
"...(I) will run and not be weary, walk and not be faint." Isaiah 40:28
update now on LDN 2 1/2 months
I'll take this oportunity to update, now that this post has been "bumped" again. Its now been 2 1/2 months since I've been on LDN and am now on full-dose (4.5mg). There's nothing earth-shaking to declare symptoms management wise but we should all remember with LDN it's more about stopping the disease progression than relieving symptoms. If we also get symptom relief (which many do) then that's a bonus.
I was getting desperate seeing that I was having major problems getting from toilet to shower (2 metres), it is still a challenge but now days It doesn't worry me as much (I think I'm lifting my feet more). Bowel and bladder aren't as scary, I have more control.
I'm sleeping deeper and breathing deeper, my feet are warmer- they often felt like a frozen ham (I live in Tassie remember). Am still feeling more "connected" to my bottom half and doing my feet wiggles in bed. I don't have as many clonus issues as I used to. Unfortunately when I wake up I seem to lose what little mobility I'd gained in the 4 hours directly after taking the drug at bedtime.
Above all, have found a compounding pharmacy that makes LDN for me cheaper at $1.11 a day instead of $3.05.
Overall, I guess I was hoping for greater symptom relief but it is still early days. Long term I'm hoping LDN will stop progression as mentioned earlier I can't afford to lose much more or it'll be harness and crane. Blessings Steve
PS. Was hoping for some relief from fatigue and that's not really eventuated (as yet). However I did have two times when I was sitting in the shade on a beautiful day when I thought to myself; "I could almost be cured." It only lasted about an hour a piece but felt great at the time.......there's still hope. Every day spent above the ground is a good day!
"...(I) will run and not be weary, walk and not be faint." Isaiah 40:28
fatigue