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

SL, are you talking about making your own LDN from the Revia Tablets?

I get actual Naltrexone, I haven't gotten Revia. Though I've seen it for sale that's not what I got.

I answered my own question though. lol I could only find it for outrageous prices, like $12 a pill. (And many places were like $250 for 30 pills + 4 free viagra pills....wth? lol)

Then I remembered River Pharmacy had it before... and they did this time too. $196 for 600 days worth. Getting LDN compounded at the pharmacy, for 600 days worth, would be well over $600 (about $30 a month, not all at once even at my pharmacy where they would discount it). That's why I order it online, much much cheaper.

If there was a $100 difference I would likely go with convenience and get it here. But, $400 difference? I need that $400 to feed my kids.

Thanks so much for that link to Amazon. I looked it up and have ordered the book. It should be shipped out around October 6th. It looks very interesting.

I have a friend - actually a former co-worker - who was dx with ALS about the same time as I was with MS. I've already talked to him about LDN and I'm going to have lunch with him and his wife next week. They're very excited about trying it. I pray that it helps him....he's just been through so much.

Boy, I have to say that my nails are growing really fast since I started the LDN. It’ll take a few months, I guess, but it’ll be interesting to see if the new growth is strong as well as fast growing. Perhaps my hair will “plump up” too. Such possibilities!