Hey There.......Twinkletoes gave me this great link about LDN.

However, I can't read all of these posts!

A couple of questions:

1. Your neuro doesn't have to prescribe this?
2. Any sides?
3. Cost - more or less than Tysabri?
4. Really can notice changes? That is exciting.


I've just about given up on Tysabri. When I first started it I developed a severe sinus infection. I was off for several months got back on and when through 5 wks of the runs. Started it back in August, and almost have full blown case of pneumonia. My PCP treated me for the above illnesses. I should also say (with head hanging) that I smoke. He put me on predinsone last week and I feel better than I have in a while. I should also mention that while I was off Ty I felt really good. I have to contact neuro to update him on this last episode. I should also mention that I have been in a relapse for about the last 8 wks. I have tried Avonex/Rebif/Novantrone/ Copaxone/ Tysabri. I just really want something that will help me and not push me back for every step I take.

Thanks for listening but I'm just so

Wow, I hadn't realized we were at 330 posts in this thread! Holy cow!

There are a couple other LDN threads. Just click on "Search" (see bar above), click "tag search" and type in ldn. Happily, they are much shorter.

It's so nice to swallow capsules instead of jabbing myself. So inexpensive, too. I read quite a lot about it before beginning, and never could find a reason NOT to try it.

Been on LDN 6 weeks now. So far, so good. Worth a try, I'd say.

Good luck, whatever you decide, Deb.

momma I have had no side effects matter of fact a few things have changed nails are growing again my hair seems to be slowly thickening

I have stopped 5 pills davorcet klonopin lyrica tegretol and provogil I got a script for 3 month supply at 1.5 mg a night it cost me 29.00 plus shipping like $33 all total

it has help with spasm it was touch and go for a bit but the last 5 days or so they have subsided,(started my LDN on 08-08-08) the muscle tightness and pain are at a tolerable level some days it hurts most times its cause i over do it so that i see this as my fault not the meds.

dont need the speeder anymore and being limited to pain meds, because LDN and certain group of opiate pain meds they tend to wash each other out and are not as effective and you might end up taking more pain meds then you should, so I am using alleve which to my surprise is doing me good so far

yes some have had reg general doc prescribe it, and it was kind of weird at first I was hesitant to say I noticed a diff, but around the first week i was seeing a diff in energy and walking,

cog I am not so sure with me some days yes some days I am not smarter then mud. but so far this med has covered a number of ms effects that 5 pills were, some days perhaps not as well, but I am beyond happy, I am not taking all those other pills and occasionally i am sore or have spasm, but not any more than when i was on those 5 pills and over did it during the day

hope this helps some

forgot to say doc and me are slowly debating stopping copaxone, time will tell on that, I see it happening

Questions from MommaD.....

1. Your neuro doesn't have to prescribe this? - Nope, any Doc can prescribe.

2. Any sides? - Possible insomnia, a little leg stiffness and feeling good.

3. Cost - more or less than Tysabri? - Oh, about $50,000 less per year......or 20.00 per month..

4. Really can notice changes? That is exciting. Yes, more for some than others.

Now, don't be lazy Deb, and read this thread. It will answer most of your questions, in more detail.

Welcome, mamaD.

I'll give the most abbreviated version answers I can, for someone who may prefer that.

1. Your neuro doesn't have to prescribe this?

Not necessarily. Your GP is more likely to be aware of this drug, as well as its safety profile. I would still come prepared with information from the Low Dose Naltrexone site (which means you SHOULD read and understand this information).

2. Any sides?

Start off slow at 1.5 mg, then 3.0mg, then 4.5mg. Side-effects are normally very minor to non-existent when gradually increasing dosage.

Can have slight “rush”, headache and/or nausea the first week or so. Make sure to take it down with a glass of water.

MAY 'stir up' MS symptoms initially (usually no more then 3 weeks), while your body attempts to *re-boot* (lack of a better word).

May experience "lively" dreams; most often a temporary side-effect. Not scary though, like some antibiotics are.

If side-effects become troublesome upon increasing dosage, go back down for a week or two, then try again.

NOTE: LDN IS NOT TO BE COMBINED WITH NARCOTICS, CODEINE OR CRABS.

3. Cost - more or less than Tysabri?

Tysabri is $50,000 - $100,00 a year. LDN is about $10 – $20 per month (but sometimes not covered by your insurance.)

4. Really can notice changes? That is exciting.

For me (almost 18 yrs into the disease; RRMS):

- spasticity PAIN, gone
- claw hand, gone
- fatigue, improved
- better attitude and energy levels
- bladder/bowel function, improved substantially
- able to go off antidepressants (lost 30 lbs)
- take NO other symptom mgmt drugs, except occasional Naproxen
- reduced EDSS (disability) by one point in 9 months
- remained disease progression stable
- have had one attack in 3 ½ yrs, due to an untreated infection. (Was experiencing 4 attacks per year when I went on LDN)

BTW, LDN can be combined with Copaxone (if desired), and is being used "off-label" for MS. Discuss your current meds with Skip of Skip's Pharmacy in Florida. He is GREAT at explaining things, and most experienced at compounding it.

Phew, I'm out of breath . . .

Cherie

Well thanks Frank and Cherie...I guess I'm the lazy one..

lol saving your energy for the buckeyes lost this weekend how dare me

Momma I will say another thing I was scared I had weened myself all my meds and was worried what if this happens or that, I was fine with no meds and waiting for the ldn to build, and too my surprise it was about a week i felt a change

I forgot about the potential for insomnia, Sally. That was an issue for me, but as I've mentioned before, I none the worse for wear because of it.

Well between us, we hopefully covered off the most important points for mamaD to consider, before she makes a decision on whether to bother further researching this option anyway ...

Cherie

Those of you who still buy your LDN online.... where do you guys get it? The place I got it before doesn't have it anymore. That is about half the cost of the prescription... so I'd like to go that route again if I can find a place that has it.

Thanks!

In my search I found this... looks interesting!

http://www.amazon.com/gp/product/0786437154

Do you have a rx for it? If you don't, the options are more limited . . .

Cherie