a possible long covid treatment

[redbird]

Some people are using low-dose naltrexone to treat long covid: https://www.rollingstone.com/culture/culture-features/long-covid-treatment-addiction-drug-1234701573/

I read about this in Eric Topol's "Ground Truths" newsletter, which said "An article in today’s Rolling Stone (of all places) reviewed the potential of low-dose naltrexone "

Mostly anecdotal so far, and NIH wouldn't say whether they're considering funding a placebo-controlled study. But interesting. Also interesting is that pre-2020, it was being prescribed off-label for chronic conditions including MS and fibromyalgia.

That article notes that it would be very unlikely for this, or any other one drug, to help everyone with long covid, because "long covid" is an umbrella term that covers several different problems.

Comments

[thistleingrey]

It's been offered to some folks with long covid since more than a year ago--interesting that there's enough interest variously for an article now. I think "treat" might be a bit of a reach; it helps some people to feel better while getting through a day, but it doesn't touch the underlying issues and they continue having crashy fatigue limitations.

How does it work for MS, when it helps?

[redbird]

I don't know how it works for MS. I'm considering asking my neurologist what if anything he knows about it.

The thing about living with MS is that I'm used to "treat" as being shorthand for either "treating the symptoms" or one of the "disease-modifying agents" that can prevent disease "progression." Those do touch the underlying issues, and my doctors have all sent me for regular MRIs to look for new spots of myelin loss, even if I don't report new symptoms.

[thistleingrey]

as being shorthand for either

Yes, makes sense, since MS is (generally? always? my sense is at-least-generally) progressive. For what clusters as LC, it seems hard to disentangle one (or at most a bare few) discrete event of major damage that may never heal fully, relatively minor but progressive damage, etc.

If low-dose naltrexone (LDN) would help even some folks with MS some of the time, that would be awesome.

I was offered LDN with low confidence (neither the neurologist who offered to prescribe nor the one I saw for a more general neurology check thought it'd pertain in my case), and since I also thought then and think now it wouldn't pertain, I declined. For me the significant differentiator is autoimmune-based.

[redbird]

MS is very broadly classified as either "progressive" or "relapsing-remitting." The latter means that there may be "exacerbations," but some or all of the new symptoms may go away on their own. I think those are broadly speaking the same thing, but I haven't been keeping up with information/theories there, only trying to keep an eye out for possible treatments, side effects of meds, and such that are relevant to the patient who has already been diagnosed with MS.

There may also be some selection bias in the idea of MS as always being progressive. I remember reading (a couple of decades ago) about a study that autopsied the brains of everyone who had died in a particular area of Canada, long enough to have a fairly large sample. One thing they found was what looked like evidence of MS, in people who hadn't been diagnosed, and may not have been aware of any neurological problems.

[thistleingrey]

There may also be some selection bias

Ah--that's very helpful, thank you; I'd wondered. Subclinical issues occur for some folks with LC, too, autoimmune and non-autoimmune variants alike. I guess in general, people might have milder, "unexplained" chronic health issues, with less interference day to day.

[redbird]

One possibly relevant fact here: the diagnostic criteria for MS require two separate neurological symptoms (or did when I was diagnosed, in 1999).

I think that's mostly because it used to be a diagnosis of exclusion--the patient has these problems, and doesn't have a B-12 deficiency or a brain tumor or.... and someone with a mild case would go home, have the symptoms go away on there own, and it wouldn't count as MS. Now, they have better medical testing and imaging, including MRIs.

[thistleingrey]

Indeed, the Mayo Clinic page still thinks it's dx-of-exclusion, hmph; Cleveland Clinic has something more reasonable-sounding.