Hi Everyone,
As I have reported on here, I am in the very slow process of lobbying to get an extension of my allocation of TCZ. This will take ages, I know … Federal Parliament is sitting at the moment, an election is looming, and our current Health Minister is retiring after the election. Not a good time but anyway … in the meantime, I read about Low Dose Naltrexone, and that some people are having success with it in tapering and remaining off Pred. Does anyone know anything about this? Thanks
Has been discussed on here before , maybe look at related posts, or type LDN into search . Here’s just one post from 3 years ago -
healthunlocked.com/pmrgcauk...
Don’t think there is a lot of support, or we would hear more about it.
Yes, I thought as much. I just had a quick read through the posts from 3 years ago, doesn’t sound promising at all. Thanks for responding.
Always worth asking……
Sarah Mackie told me they had had a look at the literature and come to the conclusion it was more promise than substance, Ages ago someone in Norway said they were starting it - it is used some in Norway - and promised to tell us how she got on. Never heard from her again. You'd think if it was that good we would hear wouldn't you?
Yes, you would. Thanks for letting me know. Just exploring options as I await a response from the Govt that I am not too hopeful of.
Just an update - found this post - might be worth contacting Megams and getting her take on it -
healthunlocked.com/pmrgcauk...
Yes, thanks DL, I will follow up with her. Thank you for passing this on.
This was her first post on subject. Might be worth looking at profile , she’s not been on much lately -
healthunlocked.com/pmrgcauk...
Thanks again, I will do so tonight. Much appreciated.
Let’s us know if you get anything interesting….
Yes, I will definitely feed back on here. It's so hot here at the moment 😫, going for a record hottest summer, I'm going to cool down, have dinner and then get to work. 🥵 🔥
Think your neighbours could do with a bit more sun…had a rubbish summer (obviously holding off until my next visit 😳)….certainly in Canterbury area….farmers getting bit angsty about getting crops in - but when don’t they!
Daughter’s in middle of new house build and fingers crossed for good weather as well…send some across ☀️
Do you have family living in Aus DL? Yes, farmers here are never happy but then they're in the grip of Mother Nature. This weather has knocked off a lot of the more delicate crops. Just watching the weather forecast for the week ... high 30s (or 90sF) ALL week!!
No, NZ, on the Canterbury Plains…..one grandson in Wellington, not in farming, but still outside a lot….architectural landscape etc. Other grandson back in UK for a few years, college and gaining farming experience, but will be going back.
Oh our neighbours in NZ, well they're used to rubbish summers, like the south east of Aus, where I'm actually from. Here in WA it's usually hot, but not like this, no respite since before Christmas. But hey, it's a beautiful place and as soon as it starts to cool off we'll all be complaining about that!
Well it must be me then, the times I’ve gone there, the summers have been glorious…but then I am comparing them to the UK’s…🤣😂… perspective….😊
Correct! Australian summers sizzle! 🔥
Last night I posted my experience with LDN on an eight-month old thread by Lilly-Gee on this forum. Since that thread is old and people may no longer be following it, I am also posting that same information here on your more recent (only ten-days old) thread. So here it is:
I was diagnosed with PMR about 3 years ago, and I did a course of prednisone at that time in which I started at 20mg/day (briefly), then 15mg, 12.5., 10, 9, 8, 7 . . . relentlessly tapering to 0. At that time I had not discovered this forum, so I did not know how to taper correctly, and my rheumy did not tell me to stop or go back to a prior level if my pain returned. Well, it did return, at around the 9 mg/day level. Having tapered to 0, I decided to try non-prednisone approaches and see how I did (the fact that Covid had arrived factored into that decision; I did not want to have a diminished immune system). I got some pain relief by doing a 4-day fast and then trying an anti-inflammatory diet, but the pain relief did not continue. I did get considerable pain relief by means of taking kratom 3x a day; this has continued to the present, except that about 4 or 5 months ago I started LDN. With LDN, I started at a very low dose (1 mg/day) and increased it by 0.5 mg each week. I did not notice a pain benefit until I hit 4 mg/day, and then got even more pain benefit at 4.5 mg/day. At 5 mg/day, I found that I felt worse, so I went back to 4.5mg/day, which is the dose that I take now. I have found that the LDN has reduced my pain levels by 2/3rds; I only take kratom once a day now, usually in the late afternoon when my rib cage pain levels are rising. The LDN has let me sleep better; I still have pain upon rising 7 or 8 hours later, but not as bad as before I started taking the LDN right before going to bed (usually around 3 or 4 am; I have a badly skewed sleep schedule).
That said, I still find that I am dealing with stiffness and fatigue, and am likely to go back to a rheumatologist (probably a different one!) and give prednisone another try, this time tapering the way I have learned from this forum. I will explain my whole case history to the new rheumy (it's rather complicated; I have 3 diagnoses, episodic psoriatic arthritis, fibromyalgia, and, in the last 3 years, PMR; and my blood markers don't match the classic ones for PMR and have some markers for RA, but I don't have any RA symptoms) and all the things I have tried. I hope that the new rheumy will think I should continue the LDN and not object to the kratom I take (my old one did not), because both of them have been beneficial. But I want to get relief from the stiffness and fatigue (and late afternoon rib cage pain) I experience daily. These problems limit what I can accomplish on any given day.
I hope my experience detailed above is helpful to someone, and I am open to comments from others about my continuing journey. This forum has been a big help to me, and I am glad to have access to it.
Thank you for taking the time to share your experience. It's helpful to hear and perhaps LDN is an another option for us on the journey. I hope your Rheumy supports your plan, and please keep posting. I'd like to hear about how you manage in the future. Good luck benhemp.
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