Hi all.
I came across this research trust through trying to get a treatment for long covid for my son.
After looking into it, it seems like they think there might be a possibility that it could help PA sufferers, though mostly it seems like it's extrapolated from their success in other immune-related diseases.
ldnresearchtrust.org/can-lo...
I'm going to make an appointment and see if it will help. Has anyone else tried this?
Fiona
How interesting! I’ve only ever heard of it being used to treat addictions.
Naltrexone is used to treat addiction. But LDN is very low dose Naltrexone, and it does seem to help with some auto-immune issues.
Based on my experience with life-long ME, I would say give it a try. With such a low dose there is very little chance of doing any harm, and I think that it is one of those 'remedies' that work for some and not others.
I tried it for ME, and it didn't seem to make any improvement, although I did notice that the arthritis in my hands went away. But, at that time my hypothyroidism wasn't being treated properly, and I had not started my B12 injections.
Some might find this link of interest in regard to FND which many Drs are reluctant to prescribe....... careopinion.org.uk/174599#:....
A functioning member of society to a non functioning member of society 😞 very sad 😔
I think this must have changed because my son in Edinburgh was prescribed this by a Dublin doctor from the Glasgow pharmacy mentioned in the article.
Do you mean to tell me I have got to go to Edinburgh to get it prescribed? I am getting my kilt on as I type, only joking.
I hope your son is seeing improvement from taking it. 🤞
Very interesting... I read an article recently about the underprescrbing of naltrexone for alcohol addiction, despite its success rate. Seems as though the UK view on alcoholism is a Puritan abstinence or nothing, whereas with naltrexone you can still drink but you don't enjoy it, therefore naturally tend not to bother much, if at all. So what would be the chances of getting it off label for something like PA...? I'd love to hear anyone's experiences.
I had a medicine review yesterday ! It was a Dr I have never spoken to before who hadn't a clue what or why I were prescribed certain meds. He said my B12 was prescribed 3 monthly so I quickly corrected him on that, its prescribed every 2 months.
They are penny pinching every way they can. The conversation finished with him saying they want to take bloods for colesterol ! I retorted ' I spoke with my cardiologist last week ' I am sure if he thought I needed statins he would have prescribed them. It amazes me how they prescribe statins even when not needed but something such as LDN is not available. 🤑 telegraph.co.uk/news/2018/0...
I will ask my Gp if he will prescribe me next month when he phones me and report back but have a feeling the answer wont be in my favor........
As a fellow long covid / PA crossover sufferer, this might be interesting for you in terms of patient-reported effects of various possible treatments for LC, including B12. Usual warnings about unrefereed preprints - and it's a survey - but pharmd.substack.com/p/prepr...
This is fascinating - thanks!
I've been using LDN for ME and Fibromyalgia since about 1994 and it's helped a lot with improving energy and with pain. The LDN Research Trust and Dr Bihari helped me with dosing at the beginning. I was mostly bedridden back in 93-94.
Another big help and necessary for me was eliminating nightshades. But that was for joint pain.
I also started Armour around this time, so...
Hello Fiona, Yes I am currently on LDN (my ME specialist prescribed it for up to 12 ml/day and am currently at 9 ml) for the past 4 months? It has made a difference in overall symptoms related especially fatigue; Although fatigue remains an issue, it has helped improve my energy so that i am able to do a bit more activity during my day. Previously I was unable to do any extra outdoor activity and now am able to walk my dog thankfully for both him and I! ) 
How long is it possible to have pa before diagnosis 
Possible PA?
Psychiatric symptoms of PA
Government Petition for PA
PA and Sjogren’s Syndrome
