LDN for PMR | Arthritis Information

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This is an excerpt of a post that may give some of the newer members another choice of treatment.

 
I will not have empirical evidence until my next blood workup in Oct. which will indicate my inflammation levels etc.
However, I have lowered my Prednisone intake to 2mg. now and have had no flareups, which indicate to me that LDN continues to help me along.

According to the LDN forum members-in-the- know and the founding MDs, anything under 1.5mg. is not going to be efficacious.
However, it IS advised that you begin at 1.5mg. if you have a thyroid condtion or if you have an untoward reaction.
Otherwise, the full 4.5 mg. is recommended.

FYI I began LDN at the full 4.5 dosage and did just fine with it; good energy and no sleepless nights or any other side effects.

As you probably know, LDN is helpful for many diseases in addition to autoimmune like PMR since LDN up-regulates/modulates the immune system which after all, is the gateway to our health and well being.
 
Hope some of you find this helpful.
 
Pat
 
 

Teed Off

I gather you must also post as Rubber on another site. (http://www.arthritis.ca/open%20forum/boards/polymyalgia/default.asp?s=1)

I would add that before anyone tries LDN, that you read Jot's experience on LDN.  Jot is the first person with PMR I know of that is trying LDN.   Jot has read and researched LDN for many months and I have been in contact with her as LDN looks quite good in other auto immune diseases.   A petition has been lodged with Parliament here in the UK asking for clinical research into LDN.

There are back discussion posts on LDN on that website and also there is a wealth of information on LDN to be had on the web.

LDN has not been trialled for PMR it has for other drugs and it is not cleared by either FDA or here in the UK.   Natrexolone is cleared by not Low Dose.

http://www.lowdosenaltrexone.org/ldn_and_ai.htm 

This website is a starter - I will try and gather the other websites together if anyone is interested.  Follow the links also at the bottom of the page.

I would advise everyone to read everything and be cautious  you can about it before getting your hopes up and/or trying it and this applies especially to people with GCA. 

Sorry  errors in previous post  corrected here.

LDN has not been trialled for PMR, it has for other illnesses.

Natrexolone should read Naltrexone is cleared but not Low Dose Naltrexone

Hi Mrs UK
 
The above excerpts are from Jot's own experience on LDN and these are her words.  I am in contact with Jot and she has given her permission to carry her message on here.  She does have PMR and is finding the relief she is getting from LDN to be most effective.  She is going to pass on the results of the 6 month blind study for fibromyalgia when they become available.
 
Sorry, I am not the above mentioned Rubber.  Good luck everyone.
 
Pat
TeedOff2009-09-03 18:40:10Teedoff

I am sorry too that you are not Rubber.

I know Jot has PMR, I said that in my post.    It is most exciting that LDN may, just may, be an alternative - that's why I and many others in the UK signed the petition to Parliament.

We need  clinical trials for LDN in relation to PMR.

 I don't think any drug company is going to undertake the trials as there does not seem to be any money to be made and drug companies are not philanthropic.

I am just so wary that people do not get their hopes up and then dashed down again.

Maybe I am too old to and too long in the tooth.

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