November 15, 2010 at 10:38 pm
has anybody been on or heard of success for cidp with low dose naltrexone? When i asked my Dr about it i was told it was only used for pain–and i dont have pain. i’ve read some interesting articles and it seems like they’re using it more to boost the immune system versus knocking it down and not just pain?? I’ll have to bring her some of these articles………any imput from anyone on it would be greatly appreciated. Lori
November 15, 2010 at 11:04 pm
I had a friend submitt that very question at the symposium but it did not get picked. At a higher dose it isused as an opiate inhibitor, i wonder if it also blocks certain other pain killers. It is used regulary on ms patients, one of whom is a doctor himself. He was the doc that was instrumantal in figuring the 2.5 mg dosage, aka low dose for results w/ ms. Mayo tried it at the higher 5 mg dose that had side affects not worth the benefits. I cannot get an answer from our neuro either. It is a benign medicine, I don’t understand the reason neuros refuse to consider it for cidp?!
November 16, 2010 at 8:20 pm
yeah i was wondering why it isnt being tried as well. I’m not a Dr……but it seems if there is a drug available to alter the immune system by boosting it verses knocking it down that it would be safer. I read that it is being used for ms, certain cancers , hiv/aids all which are immune related—guess i’ll have to check into it some more, gather all my resources before my next appt with neuro in February. If i find anything interesting i’ll keep you posted : )
AnonymousNovember 23, 2010 at 12:34 am
[QUOTE=Lori222]has anybody been on or heard of success for cidp with low dose naltrexone? When i asked my Dr about it i was told it was only used for pain–and i dont have pain. i’ve read some interesting articles and it seems like they’re using it more to boost the immune system versus knocking it down and not just pain?? I’ll have to bring her some of these articles………any imput from anyone on it would be greatly appreciated. Lori[/QUOTE]
I started taking low dose naltrexone for CIDP for about 18 months ago. I started IVIG about 12 months ago. There was some small improvement from the naltrexone by itself and somewhat more after starting IVIG. I have more endurance for walking (my legs, left in particular, are affected). I doubled the distance I can walk at a stretch from 3/4 mile max to 1.5 mi plus There was no improvement in recovering more sensation however. Sx progress has not stopped entirely but has slowed dramatically – a little more numbness but no further muscle weakness. I have no side effects from the naltrexone at 4.5 mg and for the IVIG just a mild headache on the day after Tx completion each month which responds to a dose of Excederin.
November 23, 2010 at 9:25 pm
Jeff was the naltrexone prescribed for you for pain or to actually help with strength and numbness from the cidp? Lori
AnonymousNovember 26, 2010 at 10:35 am
Naltrexone was prescribed for strength and numbness, which is to say for immune system regulation. I have never had any pain. My family doc made me aware of it as a possibility and prescribed it when I said OK. My neurologist did not object and actually purchased the book
The Promise Of Low Dose Naltrexone Therapy: Potential Benefits in Cancer, Autoimmune, Neurological and Infectious Disorders [Paperback]
Elaine A. Moore (Author)
There is also a website
I have not come across anyone else with CIDP who is using Naltrexone and as I said my experience was that I got some modest benefit from it. Naltrexone is an opiate blocker and is used at 100-200mgs for substance abuse treatment to diminished the “high”. In much lower doses in the 1.5 to 4.5 mg range it stimulates production of beta endorphins which seem to play a significant role in immune regulation for moderating t-cell response. MS and Crohn’s in particular seems to respond very well. Low dose naltrexone has to be prepared at a reliable compounding pharmacy since it is manufactured in 100mg doses.
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