Greetings and goodwishes to everyone out there reading this.
It's over two months since my last post, so thought it was time for an update. Late July and several weeks in August were something of a struggle as I wanted to increase my LDN dose to 3mgs, but kept being thwarted by severe reactions, headaches, nausea and vivid dreams, so back down I would go, be OK for a couple of days, start increasing my dose gradually, but there would always be a point just as I was approaching the 3mg mark when the reaction would set in again. Also I had a chest infection, so was really feeling exhausted and fed up. But I got there and shortly afterwards was able to reduce my Pred to 2mgs.
Early September I decided to gradually try increasing the LDN again, and the most amazing thing happened. The morning after taking the first evening dose of 3.2mls LDN I woke and was immediately aware that things were different; I didn't have to drag myself out of bed, I felt mentally more alert and energetic and I even felt enthusiastic about the day ahead. I hadn't felt like that for quite some time and it was a real joy to be my old self again.
Of course I felt hesitant about rejoicing too soon in case it didn't last but almost 3 weeks later the old debilitating tiredness that used to blight my days has not returned. Some days are better than others, but I definitely have more energy than before and I am enjoying my life again, such a contrast to the time when it took all my energy to do the minimum each day before falling exhausted into bed each evening. At the moment I am on 3.5mls LDN and have started to gradually reduce my Pred intake. (Now on 1.8mls, I take the soluable form) At the time of writing I have virtually no pain, only a little stiffness in the mornigs which soon wears off; no nausea or headaches either.
Was this improvement only down to the LDN - it's difficult to be really sure. I had recently added Vit.D to the Zinc & Omega 3 I take each day(all necessary for healthy immune functioning and very often depleted in people with auto-immune problems) as well as various other vitamins. All I can be sure about is that I AM feeling very much better of late, and I believe that there is room for further improvement. My aim is to increase my LDN intake and get off the Prednisolone completely. I must add that I am doing this under the guidance of Dr Bob Lawrence, an expert in LDN use in auto immune conditions.
My very best wishes to each and every one of you as you progress along the "PMR/GCA" path; may you find all the information, support, love care and understanding you need on your journey.
Polly-Anna
Could you remind us what LDN is? Thanks!
I'm happy to hear that you found a treatment that works !! So glad you are feeling better.
freesia2
I would, also, like to be reminded of what LDN is. Life has been a bit of a struggle lately with extreme fatigue.
Decreased my methyprednilisone to 14 mg. Wanting to decrease again. Sick of bruising and puffy face and being so darn tired all the time. I do take tramadol. It seems to help with the overflow pain. Maybe LDN would help?
Gentle hugs,
Jannie
I'm not the OP (original poster), but I think LDN stands for 'Low Dose Naltrexone'
http://www.articlesbase.com/medicine-articles/getting-a-prescriptiption-for-low-dose-naltrexoneldn-naltrexone-capsules-3mg-45mg-and-where-to-have-to-dispensed-in-the-uk-1002830.html
LDN stands for Low Dose Naltrexone.
Naltrexone was originally used in the treatment of heroin addicts, but it was discovered that in low doses it stimulated the body to produce more endorphins, which are needed for the efficient funtioning of the immune system ( and are usually at low levels in people with auto-immune problems).
It has been successfully used in this form for many years now to treat MS patients; a recent study has also indicated that it seems to be of benefit for fibromyalgia, but to date no data about it's usefulness for PMR patients.
Should you want more information, the following sites could be of help;
www.ldnresearchtrust.org
www.ldnaware.org
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