LDN | Arthritis Information

In July 2009 I was diagnosed with PMR, and in those early days this site was a source of information and encouragement. Now, maybe I can offer some information which may be of interest to some people.
Back then, I took the Prednisolone as prescribed and the pain and stiffness disappeared, but as I have been reducing the dosage the pain has returned to some degree; the fatigue levels remained pretty much the same. Increasing the Pred. is something I want to avoid as I haave had so many side effects over the months that I have been on it. I heard about low dose Naltrexone via the internet and decided to give it a try.
Basically, Naltrexone in low doses stimulates the body to produce endorphins which play an important role in efficient immune sytem functioning. At the time I developed PMR I had gone through a traumatic and exhausting 2 years which left me feeling incredibly drained and exhausted; I believe my immune system was depleted and struggling to cope, so the idea of taking something which will actually strengthen my immune system appeals.
Naltrexone in high doses is licensed for use and is most commonly used in drug rehab programmes. However, as it is not licensed for use in low doses (it is out of patent so the drug companies have no interest in funding the necessary clinical trials) it is not always easy to get a supply.
My aim is to increase the LDN (I am starting with 1ml.) while gradually reducing the Pred (I am on 3mg at the moment) and hopefully I might be able to give up the Pred before too long. I am also trying to stick to a diet of no red meat, no dairy products, no wheat, no caffeine and no citrus fruits (all cause inflammation apparently) and taking a variety of vitamens and minerals.
I am just 2 days into this regime, and I intend to place reports from time to time in case they might be helpful to anyone thinking of maybe giving this a go!
Best wishes to all,

Polly-Anna Polly-anna, I would be very interested on how the LDN works out. I have been looking into this for quite some time but haven't found alot of info for how it helps with PMR. I'm just starting with PMR and already don't like the side effects of the steroids but am also weaning myself off extended release narcotics at the same time so not sure which symptoms are which until I get the narcotics out of my system. It was my choice to stop the er med because I wasn't seeing enough relief to substantiate the dependency. My doctor has increased my dosages 3 different times with no real decrease in pain levels either.

Good Luck with the LDN and hope it works well for you.!!

http://www.lowdosenaltrexone.org/ldn_and_ai.htm wealth of information.

Use the search facility on both this forum and www.arthritis.ca/open%20forum/boards/polymyalgia

Discussions have taken place and may well be worth reading.
Hi Everyone,

I have been busy getting all the information on LDN that I can find and it is looking very promising. The results for the latest blind study for LDN and fibromyalgia has not come out yet but they hope in the next month or so. I will post the reply I got and try and get a few other lincs for you.

Here are a couple to start you off.

www.drmirkin.com/forum/printer_friendly_posts.asp?TID=1347

http://www.medpagetoday.com/Rheumatology/Fibromyalgia/13785

Good afternoon,

Thank you for your interest in our research. We're currently in the process of analyzing the results from our larger trial on LDN and hope to have it published in the next few months. When that happens, we'll make an announcement on our website - http://snapl.stanford.edu

Please let me know if you have any questions.

Take care,
Rebecca McCue
Lab Manager
Stanford Systems Neuroscience and Pain Lab

I have a friend with polymyalgia and she has been on LDN. She noticed a difference right away.

Hope this is of some help.

Pat Thank you Mrs UK. I am keeping in touch with JOT and have asked her more questions on how she is doing. She says all her blood work is normal right now but she is still having problems with her hands. I do not know if she is still on LDN. I told her when she gets some time to get back to me with more info.

I have a great new Dr. who explained to me that they, Drs., have a habit of putting all people with the same disease in a little black box and treating them in the same way with the same meds but we are all different. What works for one does not work for another. When I told her of LDN she was very excited and asked if I could get some lincs and more info for her. I just have to drop it off at her office.

You are right about the differences between poly and fibro and how LDN seems to work better for fibro. I have a tendency to get overly excited about these things and must learn to curb my enthusiasm. One can only hope that somewhere in their studies there may be an answer for both diseases. It seems that the UK is so much further ahead with the poly studies and I say a little prayer each day that the answer will come soon for all AI diseases. I still say all of your hard work in the UK has played a big part in the progress already made there.

You take good care of yourself.

Pat

TeedOff2010-05-18 13:37:46Hi Everyone,

Thank you for the interest, information and good wishes.
After 3 days of 1ml LDN and no reaction, I increased my dose to 2ml yesterday and to my great excitement I had a bad night - interrupted sleep, weird dreams, aching arms and legs, a headache and nausea; all these symptoms are signs that the LDN is "kicking in" and that I am starting to produce more endorphins. Hopefully they will only last for a few days until my body adjusts to the new situation.
I hasten to add that I am doing this in consultation with a doctor who has many years experience of working successfully with LDN (mostly with MS patients). For a few people the initial period of adjustment to LDN can result in a severe increase in symptoms which could be very painful and frightening, and it needs to be managed correctly; it is my personal opinion that there is a need for professional advice and giudance when using this drug in order to be able to cope with such situations.

Take good care everyone,

Hi Everyone,

Just an up-date as I have been taking the LDN for a month now. In this period I have decreased my Pred to 2.5mgs without any adverse reaction. The vague pains and stiffness is about the same - no change there. The extreme tiredness I used to feel has improved quite a bit and I am only needing to sleep in the afternoons from time to time. I also suffer from bronchiectasis and there has been a definite improvement with that.
I am still only taking 2mgs LDN daily (the normal dose is between 3 & 4.5mgs). So far, everytime I try to increase the dose I have a severe reaction, much worse than when I went from 1mg to 2mgs - nausea, headaches, exhaustion and weakness, as well as difficulty with sleeping and weird dreams(all of which disappears as soon as I return to the lower dose). So I will stay at 2mgs for at least another week, on the advice of my doctor.
I definitely feel there has been some improvement with my PMR - but the steps forward are tiny ones!

Good luck and best wishes to all of you reading this, take good care.
Thanks for the update LDN. I will ask my doc about his next time I see her.

My PMR has morphed into zero negative RA .Hands and wrists very stiff. Am on 400mg plaquenil and 2.5 pred. it is helping somewhat.

Pls keep us posted on the LDN!

Hello to everyone out there reading this, just a quick up-date on my situation. I am now taking 2.5mgs LDN and no side effects so will be increasing the daily dose to 3mgs shortly. I did have an increase in the PMR symptoms when I reduced my Pred intake from 2.5 to 2mgs. - pain in arms and legs and totally washed out - but back on 2.5mgs and the pain is just about gone and my energy levels are better. Amazing that only half a mg. can have such a big effect!
I find it difficult to be sure about the effect of the LDN; some days are quite good and I feel really hopeful, but others are a struggle and I am just glad to have got to the end of the day. We have had very hot weather here, well into the 3os centigrade and I don't feel that helped.
My rheumatologist is of the opinion that if LDN is to work it will be a long-term thing, "re-adjusting" the immune system is unlikely to happen overnight! The theory behind the use of LDN makes sense to me and I want to give it my best shot, so if necessary I'm in it for the long haul!
Marianne, (and anyone else interested) you can find loads of information about low dose naltrexone therapy at the following sites:
www.lowdosenaltrexone.org
www.ldnresearchtrust.org
Maybe it might be an idea to take some of this information along at your next appointment, as mostly the medical profession are only familiar with the use of naltrexone in high doses (i.e. 50mgs plus) and therefore tend to dismiss it as inappropriate.
Sending good wishes to you all, may you find comfort and relief in your search for a way back to good health and happiness.

Thanks for the update Polly-Anna. It is great to see anyone having a positive outcome with treatment for this disease. Continued success.

Pat