Multiple Sclerosis (MS) Support Group

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Beemergirl 03/25/2010

So, I never thought it would happen, but my neurolgoist prescribed LDN for me. I have been on Rebif for the last 3 months ....but it was making me really sick and worsening my symptoms.... (I had been on avonex for a year and copaxone for 4 years prior to this )...So, he said I could stop taking it...which I guess is good news and bad news. The good news being - NO MORE CRABS! The bad news being that I don't have to take CRABS anymore because I am secondary progressive. OK - I have high hopes for LDN..... He prescribed 3.0 mg, but I thought I read somewhere that you should start with 1.5 mg....anybody know?

deleted_user 03/25/2010

I'm sorry about the bad news and happy to see you using LDN in a way it can be most helpful.....there is Ampyra to for SP..I don't know if that would help you also?

deleted_user 03/25/2010

I just started LDN 2 weeks ago. I was told to start at 1.5mg for the first 2-3 weeks and then up to 3mgs.
My doctor wrote my script for 4.5mg...but when I talked to the pharmacy, I asked them to compound them in 1.5mg capsules. It was not a problem at all.
Also, it is recommended for people with MS that have leg spasms/cramps to stay on the 3mg dose.

Best of luck to you

deleted_user 03/25/2010

What I would do about beginning LDN, is start as low as possible
& increase very slowly each week. Sleep disturbance may be the issue & is why I stopped taking it twice.

Try melatonin as a sleep aid.

good luck

deleted_user 03/25/2010

I WANT TO TAKE LDN I WAS ON AVONEX SINCE I WAS DX'D BUT WAS NOT INTO HOW TERRIBLE IT MADE ME FEEL, ALSO NOT BEING HELPED ENOUGH BY IT? THEN TYSABRI BUT DR. TOOK ME OFF IT CUZ I WAS SHOWING SIGNS OF AN ALLERGIC REACTION? M.S IS TRUELY A DRAG ON EVERY1 WHO HAS IT OR KNOWS SOME1 WITH IT! I AM MOST INTERESTED IN LDN 4 MYSELF BUT I SUPPOSE I MIGHT NEED A DR. 1ST.???

deleted_user 03/25/2010

You absolutely cannot use/take LDN if you are taking narcotic painkillers. Be careful with LDN.

Warning: I got violently ill from it.

deleted_user 03/26/2010

i dont really get the CRABS reference

LarryLDN 03/26/2010

3.0, perfect, go for it; hope to hear wonderful news reports ;)

LarryLDN 03/26/2010

CRABs:

Copaxone, Rebif, Avonex, Betaseron

LarryLDN 03/26/2010

I started on 3.0, never took less than 3.0

I have 1.5 caps so I can do 3.0 or 4.5, but rarely check out 4.5 any more

3.0 works best for me

deleted_user 03/26/2010

Of the (DMD) Disease Modifing Drugs:

Copaxone, Rebif, Avonex, Betaseron

some people refer to them as CRAB's others call them the ABC-R's

(both refer to the first letter of the name of the medication)

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