LDN and prednisone

[papadapadoo]

My doctor has prescribed LDN and I will be receiving it soon from a compounding pharmacy. I am tapering prednisone, now at 12.5 (from 20 over 4 months) with no pain, although I can feel that PMR is still active. From what I have read, I plan to take 1.25mg of LDN at night, and 10 mg prednisone in the morning, slowly working the LDN up to 4.5 and the prednisone down as reasonably quickly as I can without a flare. Has anyone tried a similar formula? Any advice would be welcome, and of course I will report developments.

[PMRpro Ambassador]

One person told us some years ago that they were about to start LDN, I think they were in Norway. They said they would tell us how they got on - and never posted again. I tend to assume that if something is good for someone they will come and sing its praises! I look forward to hearing your experiences.

[winfong in reply to PMRpro]

My experience (I do survey design, among other things, for a living) is that the squeaky wheel (i.e., the one for whom the drug isn't working or has major side effects) is more likely the typical respondent.

[papadapadoo in reply to winfong]

I agree. And if it does work, maybe one doesn't need the forum anymore. Selfish, sure. But also, knowing for sure what works and what doesn't not only takes time, but might not be applicable to others. Still, we'd like to know!

[DorsetLady PMRGCAuk volunteer]

This is a fairly recent post on same subject from another American ….not sure many in UK have experience of it…. And there was another recent post querying its usefulness in PMR.

There are also related posts, or type LDN in search box..and there is a LDN forum which might be useful-

healthunlocked.com/search/c...

[papadapadoo in reply to DorsetLady]

Many thanks, PMRpro and Dorset Lady. Your advice to so many has been invaluable. I am one of those. In this case, I have learned a lot about LDN, in theory, anyway. However, I have not found non-contradictory opinions on how it works to help one wean off prednisone. I will indeed post when I have had some experience. My GP is letting me lead on this--as I much appreciate. Apparently Norway (youtube.com/watch?v=rBd2gv8...(Not working as expected?) and Ireland lead on use of LDN for autoimmune issues. It is little known in the USA.

[DorsetLady PMRGCAuk volunteer in reply to papadapadoo]

Unfortunately the link doesn’t seem to work

[papadapadoo in reply to DorsetLady]

Ah, YouTube, my nemesis. The Norwegian video is available on this page: lowdosenaltrexone.org/featu...

[DorsetLady PMRGCAuk volunteer in reply to papadapadoo]

Happens to us all at times 😊..ta

[powerwalk]

Good luck with this, i hope you get something from it. I tried it but more for the fibromyalgia pain than pmr. It didn't agree with me but i am shockingly bad with meds!! Let us know how you get on. Best wishes.

[SusanEleven]

Looking forward to hearing more. I’m also in the US and have been curious about LDN.

[catdance]

Hi papadapdoo. I don't have any experience with LDN. I had to look it up to see what it was. My question is why? What is the rush? I read your profile and if you have only been on pred for 4 months, that really isn't very long. My rheumy keeps trying to get me to take another med along with pred, "to help me taper quicker", but I don't want to add another medication that has a whole other shloo of side effects to deal with. I'll just stick with the pred, I know what to expect and most of the issues have either resolved or I have headed them off by taking supplements and eating a good diet. Just sayin'! I have been on pred for about 3 years. I started at 20 mg and I am currently tapering to 8 mg. I've had a few set backs from going to fast per rheumy, health issues, stress or vaccines but I am working on it! The rheumy says I'm still on too high of a dose. I thought I was actually on a moderate dose, according to Drugs.com, a high dose is considered 40 mg and higher. 7.5mg to 40 mg is moderate and 7.5 mg is low. Hhmm? Guess you're on a moderate dose as well? For a while I tried taking the pred as recommended, in the am. It always seemed like I was playing catch up so I tried split doses. It worked for a bit but found it wasn't quite cutting the pain in the morning. Now I am taking my dose between 11pm & 12am, if I can manage to stay awake that long. Lol! It has helped tremendously with the pain level, especially in the morning & I sleep better too. If you are still having pain though, I'm not sure you're ready to taper any further. I'm not a Dr, just letting you know what works for me. That's when I get into trouble tapering too fast. Anyway, if you still decide to take this medication, I wish you all the best.

[papadapadoo]

Thanks, catdance. Since I started splitting my dose, taking 1/3 at 2 AM (or whenever I wake between 1-3) I have been nearly painfree in the morning. As for the LDN, I know that hurrying won't persuade PMR to let go! But LDN is easily tolerated, and last time I was on long-term steroids I had some troubles. I'd like to avoid the negative effects of prednisone if I can. I'll still have to taper the pred, but from what I read, I'd rather be on long-term LDN, although it works differently and not for everyone.

[papadapadoo]

My introduction to LDN has been excellent. For two nights now I have taken 1.1mg of LDN before bed. Both nights I went quickly to sleep, then woke an hour later (this is typical for me) with a strange feeling: I felt like a kid again, just for an instant. I'm sure the reason for this was that there was not a trace of PMR's effects, no pain, no stiffness. When I woke to take my 2 AM prednisone, I felt just a twinge, but this morning there is almost nothing. It is way too early to draw conclusions about the LDN, but it is exciting to sense that it has promise for at least some of us. As for the vivid LDN dreams I read about–the only dream I can recall is about updating the operating system on my laptop, so…no. More to come, I hope.

[papadapadoo]

I am now 9 days into LDN use. I have been experimenting and I still do not have a sense of how best to use LDN to speed my prednisone taper (and then use LDN for maintenance). However, this morning I arose with a zero (no pain, no stiffness at all) in my log. Last night I took half of a 4.5mg LDN tab at bedtime, then my usual 5mg of prednisone at 1:30. I followed this with 7.5 mg prednisone after breakfast. I will continue with this regimen and see if I can use it to get down to 10mg of prednisone. The LDN tabs from CareFirst (excellent compounding pharmacy in NJ USA) are quite small but my pill cutter handles them well.

[Chris_1236 in reply to papadapadoo]

How did this work out for you?

[PMRpro Ambassador in reply to Chris_1236]

You may find their profile interesting

healthunlocked.com/user/pap...

[papadapadoo in reply to Chris_1236]

As I've mentioned elsewhere, LDN did not have a significant effect on my PMR. But along the way it wiped out my peripheral neurology and sciatic pain, and I have continued to take it. I suspect but cannot prove that LDN buffers me slightly when I taper, in that I have not had any flares in tapering from 10 to 4.5mg.

[PMRpro Ambassador in reply to papadapadoo]

That's a quite a positive - but it isn't cheap is it? I do wish they would do a clinical trial. Norway uses it I think, they could do something.

[papadapadoo in reply to PMRpro]

Low dose naltrexone has to be compounded as it comes in 50mg and up sizes for addiction. Mine costs about $50 for 90 4.5 mg tablets (no insurance covers it) and I view it as a bargain.

[PMRpro Ambassador in reply to papadapadoo]

I know - in the UK there are only 2 pharmacies I think. I suppose that is 3 months-worth